Spanish version: The Patient's Guide to

Chronic Fatigue Syndrome &

Fibromyalgia
Spanish translation of the revised and expanded edition of our self-help course textbook.
Practical strategies you can use to take charge of your illness. Includes information on
treatment options and techniques for managing stress, managing emotions, exercising
safely, building a support network, and more. Written by Bruce Campbell, Ph.D.,
creator of the self-help program. Spanish translation by Cathy van Riel. Translation
revised by Dr. Ferran J. García Fructuoso.

 Foreword
 Prologue to the Spanish edition
 Introduction
 1: The Very Different World of Chronic Illness
 2: Chronic Fatigue Syndrome
 3: Fibromyalgia
 4: Handle Yourself
 5: Create Your Healthcare Team and Work with It
 6: Objectives and Goals
 7: Recordings and Worksheets
 8: Treatment options
 9: Energy limits
 10: Pacing
 11: Minimize breakouts
 12: Exercise, Nutrition and Chemical Sensitivity
 13: Control stress
 14: Manage feelings
 15: Improve relationships and build support
 16: Beyond loss to a new life

Foreword
You may remember the story of the Holy Grail that supposedly had the miraculous
power to restore health to anyone who found it and drank from it. Legend says that King
Arthur searched for this divine relic and that he sent his trusted knights to find out.

Sometimes I talk in my lectures about the Holy Grail because that myth runs parallel to
what I hear daily in my medical office: patients with the goal of finding the miraculous
panacea. This is particularly the case with people with CFS or FM. Humiliated by
doctors who do not understand and rejected by a medical system that relegates CFS and
FM to 'disorders', many begin a pilgrimage to find anyone and anything that might help.
As the Knights of the Round Table, they take risky journeys, fight battles along the
way, and overcome numerous challenges. Most end up exhausted and frustrated.

There are a few who do find a kind of panacea. Like Galahad, they discover that
reaching the goal is less important than the journey itself. These souls discover that
when they have visited all the doctors, tried all the medications and explored all the
alternatives, the most effective treatment for CFS and FM comes from within: they
learn to manage the illness. Although medications can alleviate the terrible symptoms,
these brave heroes have learned that the best way to manage CFS and FM is with
adaptation and lifestyle changes that lead to a new meaning and self-worth.

When I had just discovered Bruce Campbell's book, I knew I was close to the Holy
Grail. For years I struggled to find a cure for CFS/FM, but I had become convinced that
medically I could only treat the symptoms and optimize the health of my patients. Time
and nature healed the patient, provided he/she could adapt to a new lifestyle. It was
Campbell's book that spoke in general terms about these adaptations. Since then I have
encouraged virtually all of my patients to read this book and follow Campbell's advice.
He himself has traversed the dark wastelands of this disease, and teaches first-hand how
to slay the invisible dragon of this disease.

There are no known prognostic factors regarding recovery from CFS or FM, but with
years of experience I can tell you two things. First, those who do not usually do well are
usually overwhelmed by depression and lack of support. Second, those who do
extremely well share a positive attitude and a willingness to adapt. They take control of
their own life and develop a new meaning and a new self-worth of this disease process.
As Victor Frankl wrote in his 1959 book Man's Search for Meaning, we can't always
choose what life gives us, but we can choose how we respond to it.

Most authorities on CFS and FM agree that there are four steps that predictably lead to
improvement in CFS and FM:

1. Management of symptoms. Treat symptoms such as pain and sleep disruption

that exacerbate and perpetuate the disease.
2. Accompany. Ensure rest periods and set reasonable limits in daily activities.
3. Advise. Address depressed mood, anxiety and emotional stress; and learn more
effective driving skills.
4. Activity. Regularly practice low-intensity aerobic exercise.

The book you are holding in your hands is a practical self-help guide organized into
individual lessons that one can read, assimilate and put into practice on a regular basis,
say one chapter a week. It will take you step by step through the process of adapting to
this disease.

This revised edition has been substantially improved. Includes new chapters on CFS and
FM, an expanded discussion of treatment options, and new materials on creating a new
life with a long illness. Dr. Campbell has expanded these chapters on Pacing and what
works best to manage CFS and FM.

Your doctors can help with symptomatic management and recommendations; The
Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia can guide you through
the rest. This book offers hope to people with CFS and FM. There may be no known
cure for these clinical situations, but the book in your hands makes it clear that there are
many ways to improve quality of life.

Charles W. Lapp, MD
Hunter-Hopkins Center Director
Assistant Consulting Professor, Duke University Medical Center
April 1, 2006 - Charlotte, North Carolina

Prologue to the Spanish edition

The proposal of my friend Cathy van Riel, a patient and activist, whom I have known
for a long time, to review her translation of the magnificent guide for the patient with
fibromyalgia and/or Chronic Fatigue Syndrome by Dr. Bruce Campbell (PhD ), I was
very excited, and although I was overwhelmed with work, I accepted immediately.

I accepted because I knew of the great usefulness of this text, first of all for the sick and
their loved ones but also for all the people interested in serving them better, among
whom I am one.

Campbell's guide is the essence of common sense applied through the prism of a deep
knowledge of the reality of these very difficult diseases, which substantially modify the
lives of people who suffer from them.

Without a doubt, with the passage of time, we are getting to know much better the
physiopathogenic mechanisms behind the symptoms that accompany generalized pain
and abnormal fatigue syndromes. We are also getting to know the genetic susceptibility
profiles and risk factors. However, we are still facing a great pharmacological
therapeutic desert, which, although it will be overcome over time, at least for subgroups
of patients (today we know that people who suffer from these conditions are part of a
very heterogeneous group), the value of wise recommendations of this guide, acquires a
special significance.

There is not a single statement in the book that I myself have not recommended to my
patients in my regular medical practice, or that they have not explained to me, because
ultimately, much of my knowledge comes from their experiences. I try to shorten the
period in which patients will be able to stabilize through adaptations to their life, but I
always think that, even due to the great neurocognitive impact of these pathologies, the
patient, when leaving the consultation, remembers practically nothing, and does not I
will be able to remind you again until the next appointment, sometimes after six months
or a year. Without a doubt it is a wasted time that this guide will be able to shorten.

From a careful reading of it, the reality of the time in which it was written emerges.
Respect for a faithful translation has maintained some concepts that have been modified
with the advancement of scientific knowledge, such as the possible usefulness of
guaifenesin, now discarded. I also miss significant advances in recent years, especially
in terms of objectifying the differentiation between emotional and somatic pain.
However, this does not modify the interest of the text in any way.

The context in Spain is different from the North American one. The dispersion of
associations in Spain makes them lose strength, as well as the lack of scientific
committees that support them. We also do not have accessible support groups for the
vast majority of patients, nor help at school for affected children; it is very difficult to
access recognition of disability or state aid. In short, here we probably have it even a
little worse but what is really important is the work of the patient himself and his firm
decision to adapt to a new reality. You will continue to be the same person but the
disease delimits a "before" and an "after" that, the sooner it is accepted, the better.
Recognizing that, furthermore, this will be forever, constitutes a good prognostic factor
that professionals interested especially in these pathologies, quantify as very important.

We are facing a very important moment for the knowledge of generalized pain
pathologies of no apparent cause and abnormal fatigue. There are many groups that
work, from the most scrupulous science, to be able to transfer to the pharmaceutical
industry, as a result of our work, the objectives or therapeutic targets towards which
they must direct their work. I am of the opinion that we are close to being able to
demand that this powerful industry fulfill its social role, with the development of safe
and effective drugs for our patients.

I want to think that my small contribution, scientifically reviewing the text translated by
Cathy van Riel, makes this series of recommendations more understandable, and I invite
you to follow them, persevering with them, even if at first they seem uncomfortable or
difficult to accept.

Dr. Ferran J. García-Fructuoso

Doctor of Medicine and Rheumatologist
Scientific Director of the Rheumatology Service at Clínica CIMA (Barcelona, Spain).

July 2009

Introduction
This book offers a message of hope for people with CFS and FM. Even though there is
still no cure for either disease, there are many things patients can do to improve their
quality of life. By reading this book and using the strategies you find here you can take
an active part in improving your well-being. The book contains practical ideas and
techniques to regain control over your life. These strategies can help reduce pain and
discomfort, provide greater stability, and reduce psychological suffering. The approach
you will find here is based on the belief that you can change the effects of chronic
illness, and even its course, thanks to your efforts.

Like you, I am a patient. I became ill with Chronic Fatigue Syndrome in 1997. I began
the self-help program that this book uses shortly after receiving the diagnosis, at a time
when I was functioning at about 25% of normal. I created the program for the same
reason you chose this book: I wanted to feel better. I discovered one by one the
management strategies that you will find here, learning from my experience and from
the experience of other patients I met in our groups.

The idea for the program came from previous experience. Before he became ill, he
worked at Stanford University Medical School as a consultant for medical self-help
programs. I watched people gain some control over illnesses like arthritis and heart
disease by using self-help strategies like the ones you'll find in this book. These
programs taught self-help not as a cure, but rather as a way to live better with a chronic
illness. I was inspired by many people who improved their quality of life, and especially
those patients who were able to change the course of their illness by taking
responsibility for those things they could control. These self-help programs have offered
help to more than 300,000 patients for almost three decades and their benefits are
documented in many scientific studies.

When I got sick one of my first questions was: Where is the self-help program for
Chronic Fatigue Syndrome? I thought that if a self-help approach could be useful for
diseases with well-established and reasonably effective medications, it could be much
more useful for a condition without standard or widely effective treatment. I reasoned
that CFS patients seemed much more left to their own devices than people with arthritis
or heart disease, etc., and that they had an even greater need for self-management skills.
Seeing that I couldn't find self-help classes for CFS, I started one. Since many
fibromyalgia patients have joined our groups and since we adopted the name CFIDS
(Chronic Fatigue and Immune Dysfunction Syndrome), we renamed ourselves the
CFIDS and Fibromyalgia self-help program.

Our program was based on a few simple ideas, mainly having a positive approach and
learning from each other. I assumed that by meeting with other patients to talk about
what each of us has found has helped him and to support each other, we could gain
some control over our illness. As the program has developed, we incorporated many of
the proven strategies from the medical self-help programs I had worked with before.

My health improved as the program developed. The pace was slow, but regular: 1% or
2% per month for a period of about four years. In the end I returned to the level of
health I had before I became ill. (You can read the story of my recovery at
http://www.recoveryfromcfs.org/ .) Ironically, much of the improvement occurred after
I had concluded that recovery was out of my hands. Based on my improvement, I began
to believe that I could gain some control over my illness, but I also concluded that there
was no way to predict the extent to which I could recover. Once I recognized that I
couldn't control whether or not I would recover, I focused on making changes that were
going to help me feel better, give me more control, and improve my quality of life.

A serious illness brings pain, suffering and loss, but it also provides an opportunity to
reevaluate your life and change it. For this reason it is possible that you see the period
with your illness as a spiritual journey. Many students in our program have said that,
although they did not choose their illness, they had learned valuable lessons from it, and
in some cases even considered themselves better people than before they became ill.
Students often tell us that they believe it is possible to live a rewarding life with a
chronic illness, even if it is a different life. I agree.
The program you will find in this book is based on several beliefs:

 Your plan for managing CFIDS or fibromyalgia needs to be individualized

based on your unique circumstances. Every person with CFIDS or fibromyalgia
is different. Your case may be more or less serious than someone else's. Your
ability to manage your illness is also affected by other factors, such as your
finances and family situation.
 You can find things that help you feel better. These strategies are not intended to
cure your illness, but they can help you reduce suffering and improve quality of
life. Although some involve medications, many are changes to your daily habits
and routines.
 Chronic illness affects many parts of your life, so managing it means much more
than treating the symptoms. You also have to address stress and emotional
management, get support and accept losses.
 Finding what works often requires us to experiment. Some techniques work
better at some times than others or for some people than others. If a strategy
doesn't work for you at one time, it can at another.
 Chronic illness requires you to rethink your life. It may not be able to restore
your old life or live the life you had planned, but it can create a different kind of
life than before you became ill.

Our program does not offer a cure for Chronic Fatigue Syndrome or fibromyalgia, but I
hope that you will find in this book ideas that you can use to better manage your illness.
And I hope that, even if you don't get back to your old life, you will find a way to create
a new and satisfying life for yourself.

Bruce Campbell, Ph.D.

Executive Director, CFIDS and Fibromyalgia Self-Help Program
April 1, 2006
Palo Alto, California

1: The Very Different World of Chronic

Illness
When you develop a chronic illness like Chronic Fatigue Syndrome or fibromyalgia,
you may feel as if you have entered a new world in which all the rules of life have
changed and where there is no obvious path forward. This situation may perplex you
and make you feel hopeless. But there are many things you can do to gain control and
improve your well-being. This book will show you how to play an active role in
managing your illness.

Let's start by looking at how a chronic illness differs from a short-term or terminal one.
Short or acute illnesses are temporary problems that usually end with medical treatment
or with the passage of time. Terminal illness, on the other hand, is a life-threatening
condition.
Maybe at the beginning of getting sick with CFS or fibromyalgia, you thought you had
a short illness, but it didn't go away. At some point, however, you realized that you had
entered a new sphere. You were confronted with the fact that your illness was neither a
temporary interruption in your life, nor a life-threatening condition, but a third type of
problem: an illness that lingered, but was neither self-limiting nor fatal. . Instead of
resuming your old life after a brief interruption or struggle with a terminal illness, you
had to deal with adjusting to chronic symptoms and limitations.

A chronic illness not only imposes limits and brings with it symptoms that persist, but it
affects many parts of your life. It affects your ability to work, your relationships, your
mood, your hopes and dreams for the future, and even how you feel about who you are.
Chronic illness is hard to manage because its effects are so comprehensive. Living with
CFS or fibromyalgia means much more than managing symptoms.

Complicating the challenge is an interaction between your illness and the other parts of
your life. Your illness involves many aspects of your life and, in turn, is affected by
these other parts. (See diagram) For example, a serious illness reduces your level of
activities (arrow points away from CFS/FM toward Activity), but if you try to do more
than your body can tolerate, you will experience stronger symptoms (arrow points
inside). Doing too much repeatedly can result in higher limits.

Interactions between disease and

other factors

That same pattern of reciprocal effects is true for other elements as well. For example
the relationship between illness and stress. Living daily with symptoms is necessarily
stressful. In addition to this, illness often creates financial pressures, complicates
relationships and brings uncertainty about the future. Illness increases stress because of
all these things. But stress, in turn, can worsen symptoms. Even moderate amounts of
stress can greatly intensify symptoms, creating a feedback loop in which symptoms and
our reaction to them intensify each other.

The same two-way relationship also applies to feelings. Emotions such as worry, anger,
depression and grief are normal reactions when you have a chronic illness,
understandable responses to a situation in which life is interrupted and routine is
replaced by uncertainty. These emotional reactions to being sick can be particularly
intense in CFS and fibromyalgia, because these illnesses seem to make people unstable,
meaning their emotions are stronger than before and harder to control. The strength of
the emotions can create a vicious cycle in which the illness intensifies the emotions and
then the emotions, in turn, intensify the symptoms. For example, people who are
depressed have a lower pain threshold. Pain can also be intensified by anger because
anger often creates muscle tension. In turn, heightened symptoms can lead to more
worry and pessimism.

There are similar interactions between illness and relationships, and illness and money.
When someone is sick for an extended period, relationships often suffer, because the
patient feels unwell and has less energy, and because others have their lives disrupted as
well. But relational problems, such as not feeling understood or worrying about being
abandoned, create new stresses that in turn worsen symptoms. The disease affects the
economy by reducing income. Financial worries then increase stress, which translates
into stronger symptoms.

To summarize, CFS and fibromyalgia have comprehensive effects that affect many parts
of your life. They are much more than simple medical problems. A plan to manage them
has to address all of their effects, not just the symptoms.

Your situation is unique

Just as a chronic illness is exhaustive in its effects, it is also tremendously varied. Every
case of CFS or fibromyalgia is different, both medically and in other ways. The severity
of symptoms has a wide range. Some people have relatively mild symptoms, while
others may be bedridden, and most will be in between. There are also many different
patterns of symptoms. Some people may have pain as their biggest complaint, and for
others the biggest problem is fatigue, brain fog, or lack of sleep.

Also adding to this complexity is the fact that each person's illness can vary over time.
Some symptoms may disappear, but only to be replaced by new ones. Some people may
have a relatively stable course, while others may fluctuate between periods of severe
symptoms and periods of remission.

Finally, CFS and fibromyalgia can be complicated by the presence of one or more other
chronic illnesses. About two-thirds of the people in our groups, for example, struggle
with two or more medical problems. The most common pattern is that the person has
both CFS and fibromyalgia, but frequently there are people with only CFS,
fibromyalgia or both, who also have one or more other medical conditions, such as
arthritis, back and spinal problems, depression, allergies to foods and chemicals,
Irritable Bowel Syndrome (IBS), lupus, myofascial pain, sleep disorders such as apnea
and restless legs syndrome, and thyroid problems.

The bottom line: everyone's illness is different. To treat your illness effectively, you
have to understand that your situation is unique.

One way to begin to understand your individual circumstances is to identify the severity
of your illness and your symptom pattern. To get an idea of how your situation
compares to others, you put yourself on the CFS/Fibromyalgia Rating Scale. If there is a
discrepancy between your score based on your activity level and your score based on
symptoms, you must score yourself using the severity of your symptoms. Most of the
students in our course scored between 25 and 45 when starting the course, but we had
people in almost the entire range of the scale.
 CFS/Fibromyalgia Rating Scale
100 Completely recovered. Normal level of activities without symptoms.
90 Normal level of activities - sometimes mild symptoms.
80 Almost normal level of activities with some symptoms.
70 Able to work full time, but with difficulties. Mostly mild symptoms.
60 Able to do about 6-7 hours of work a day. Mostly mild to moderate
symptoms.
50 Able to do about 4-5 hours of work or similar activity at home per day.
Requires daily breaks. The symptoms are mostly moderate.
40 Able to leave the house every day. The average symptoms are moderate.
Able to do about 3-4 hours of work per day or activities such as housework,
shopping, using the computer.
30 Able to leave home several times a week. Much of the time moderate to
severe symptoms. Able to do about 2 hours of work per day and at home or
activities such as housework, shopping, using the computer.
20 Able to leave home once or twice a week. Moderate to severe symptoms.
Able to concentrate for 1 hour or less per day.
10 Mostly confined to bed. Severe symptoms.
0 Constantly bedridden. Incapable of taking care of himself/herself.

Just as people with CFS and fibromyalgia differ in their symptoms and the severity of
their illness, they come from many different life situations. A majority were married,
but many were single. There are many different ages and life circumstances. To
understand your situation you have to assess how your unique life situation affects your
illness, especially in the areas of resources and relationships.

Some patients see that their financial situation has changed little since they became ill.
Perhaps they have a mild case of CFS or fibromyalgia and can continue working. Or
perhaps they have family members who work or receive disability pay that replaces
their previous income. For others, however, the financial pressures can be great, even
overwhelming. Some people live alone, with little or no income, or no financial reserve.
Many are somewhere in the middle, stressed to some degree, but able to maintain a
lifestyle more or less similar to that before they became ill.

A chronic illness changes relationships, creates new obligations and new tensions and
frustrations. You may be single and struggling alone with your illness. Even when you
live with a family, you may feel isolated and misunderstood. All family members must
overcome the challenge to live differently; Some may have to take on additional
responsibilities. Relationships can be a great source of support, a source of stress, or
both.

In addition to your illness and your life circumstances, your unique situation includes
two other significant factors: your coping skills and your attitude. The hopeful thing
about both is that, unlike some other elements, they are not fixed. You may not be able
to change the fact that you have CFS or fibromyalgia, but you can learn new and more
effective ways to manage your illness.
Research has shown that people can learn effective driving skills through short self-help
classes. An example of such a program is the "Arthritis Self-Help" course that was
developed at Stanford University in the late 1970s and has already been followed by
more than 300,000 people. This six-session course on managing problems such as pain,
loss of function and depression is taught by volunteers, many of whom are arthritis
patients. Patients who have followed this course have significantly reduced their pain
and depression, and have increased their level of activities.

Research has shown that patients who improve most with this course are those who
believe in their ability to exercise some control over their illness. These people do not
deny that they are sick or have an unrealistic hope of recovery, but they are confident
that they can find things that can improve their lives. Research studies on the course
have shown that patients are able to learn new attitudes and skills, and that a short
course led by volunteers can produce significant change. (I have worked on this
program, and it was one of the models I used to develop our self-help course.)

Similar programs at UCLA and Harvard for skin cancer and chronic pain have produced
comparable results. Patients who attended a six-session course on managing their skin
cancer showed an increase in their life expectancy compared to other skin cancer
patients. And patients who took a course on combating chronic pain reduced their
doctor visits, their level of anxiety and depression, and their experience of pain.

Research led by Dean Ornish produced a reduction in heart disease. Through lifestyle
changes such as a low-fat diet, exercise, and group support, patients in Ornish's program
reversed the symptoms of their heart disease. In another study, people with diabetes
were able to halve their risk of heart attack and seizures by using a stricter-than-usual
regimen of blood tests and insulin injections.

All of these programs are based on the principle that the way we experience chronic
illness can change the effects it has on us and can even change the course of the disease.
They demonstrate that the use of good management skills can make a significant
difference in quality of life.

A second form of self-help, the Twelve Step movement that began in Alcoholics
Anonymous, offers further evidence of the power of people to help themselves. The
groups in this program are based on the idea that people who share a common condition
can come together to help each other. Typically, groups of this type provide a range of
ideas that help people regain control over their lives through the support,
encouragement and inspiration of the group.

The principles of the self-help approach apply to people with CFS and fibromyalgia. As
with other problems in life, learning to manage a chronic illness involves adapting to
new circumstances through adjustments to daily habits and routines. Mutual support can
be very useful for this process.

In addition to management skills, attitude is important to living well with a chronic

illness. The attitude that seems to help can be characterized as being both realistic and
optimistic. I call it acceptance.
Dean Anderson, a recovered CFS patient whose experience is described in Chapter 10,
provides an example. He writes that after failing to improve through determination and
hard work, he came to a certain kind of acceptance that he says is not resignation, but
rather "an acceptance of the reality of [my] illness and the need to carry on a better life."
different kind of life, maybe for the rest of my life." He goes on to say that "the effort
required to recover from CFS is an exercise in discipline and hope, not determination
and effort." He describes the discipline he believes is required as the ability "to
recognize and adhere to one's known limitations and to follow a strict regimen without
periodic relapses."

The six challenges of a chronic illness

As I've suggested before, chronic illnesses like Chronic Fatigue Syndrome and
fibromyalgia present you with different challenges than short illnesses. The following
chapters are organized around six of these challenges. The chronic nature of CFS and
FM suggest the first two. To live well with your illness, you have to take an active role
as a patient and you have to cope with persistent symptoms. The other 4 challenges are
rooted in the fact that CFS and fibromyalgia are more than just medical problems; They
touch many parts of your life. We will focus on four parts: stress, emotions,
relationships and loss.

Be your own manager

Your role as a patient with chronic illnesses such as CFS and fibromyalgia is different
from the role of a patient with an acute illness. With the latter, many times you can
depend on a doctor to provide you with a solution or the disease resolves itself. But CFS
and fibromyalgia are not self-limiting and currently have no medical cure. Chronic
conditions that cannot be cured have to be managed and, whether you want the role or
not, you are the day-to-day manager of your condition. You can find resources for being
a CFS or FM self-manager in Chapters 4 through 7.

Manage symptoms

CFS and fibromyalgia usually have multiple symptoms, and each of them often has
more than one cause. Most patients respond using a variety of strategies, which may
include medications, alternative treatments, and lifestyle changes. For a discussion of
various treatment options for CFS and FM symptoms, see Chapter 8. Since I share Dr.
Lapp's philosophy, as expressed in the Foreword, that CFS and FM are "best managed
with adaptation and lifestyle changes," Chapters 9 through 12 are dedicated to how you
can improve your life through changes. in your daily habits and routines.

Controlling stress

Stress can be a challenge for anyone, but it is certainly difficult for people with CFS or
FM. First, being chronically ill adds new stressors to the challenge of daily life.
Additional stressors include symptom distress, isolation, economic pressure,
relationship strain, and uncertainty about the future.
Second, CFS and fibromyalgia are very stress-sensitive diseases. They appear to
reprogram the body's "stress thermostat" so that the effects of a given level of stress are
greater than they would be for a healthy person. Controlling stress can have a great
effect on both symptoms and quality of life. To discover ways to reduce and prevent
stress and more step-by-step instructions for various relaxation procedures, go to
Chapter 13.

Manage emotions

Strong emotions such as fear, anger, grief and depression are common reactions in
chronic illnesses. Such emotions are a normal and understandable response to being in a
situation where life is disrupted and routine is replaced by uncertainty. Unfortunately,
CFS and fibromyalgia seem to make emotional reactions even stronger than before and
harder to control. For a discussion of how to use self-help strategies and medications to
manage depression, anxiety, and anger, go to Chapter 14.

Build support

Serious illnesses like CFS and FM create great stress in families and also put a strain on
other relationships. The fact that symptoms and emotions are not predictable makes
daily life more difficult for everyone. Family members and friends may take on new and
additional responsibilities and suffer losses as well. At the same time, patients often feel
isolated, both physically and psychologically. There are strategies to help you respond
to the relationship frustrations created by chronic illness in Chapter 15.

Finding meaning

Chronic illness carries many serious losses, including loss of role in the family, loss of
income, and loss of control over our bodies. Loss can be pervasive and presents us with
one of our greatest challenges: giving new meaning to life when so much has been torn
from us. Living with a chronic illness can be a spiritual journey. Illness provides us with
an opportunity to reevaluate our lives and give them new meaning. You may not be able
to go back to your old life or live the life you had planned, but you can create a new,
different type of life than the one you had before you became ill. For ideas on coping
with loss and building a new life, see Chapter 16.

summarizing

Both Chronic Fatigue Syndrome and fibromyalgia have comprehensive effects,

affecting many parts of patients' lives. They are much more than simple medical
problems. Rather than allowing themselves to be resolved, they are conditions that
patients have to learn to cope with. Self-management is not a cure for CFS or
fibromyalgia, but it provides tools for managing them that can also promote
improvement and even recovery in some cases. When offered in a group, self-help also
includes support, inspiration and encouragement from other patients.

This book is based on the belief in the power of self-help, the conviction that patients,
with their efforts, can change the effects of chronic illness. The following chapters
contain many ideas for things you can do to feel better. These strategies are not intended
to cure CFS or fibromyalgia, but they can help reduce pain and discomfort, bring more
stability, and decrease psychological suffering.
Self-management of a chronic illness is not a magic hat; It requires hard work and
patience. I hope you can be part of the large number of patients who have found
themselves able to significantly affect their level of symptoms and quality of life by
accepting responsibility for the things within their control.

References

Anderson, Dean. "Recovery from CFIDS," CFIDS Chronicle : Winter 1996, 27-29.

Caudill, Margaret. Manage Pain Before It Manages You . New York: Guilford Press,
1995. (Describes the Harvard pain management program.)

Goleman, Daniel and Joel Gurin, eds. Mind/Body Medicine . Yonkers, NY: Consumers
Union, 1993. (See Chapter 10 for the Arthritis Self-Help course description)

Spiegel, David. Living Beyond Limits . New York: Times Books, 1993. (Describes
UCLA skin cancer groups and Spiegel breast cancer support groups.)

2: Chronic Fatigue Syndrome

Before we begin our discussion on how to live better with Chronic Fatigue Syndrome
(CFS) and fibromyalgia (FM), this chapter and the next offer an overview of both
diseases, focusing on symptoms, diagnosis, treatments, and prognosis. This chapter
discusses CFS and the next chapter FM.

Brief description of CFS

Chronic Fatigue Syndrome, also known by other names such as Chronic Fatigue and
Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME), is a
long-term disorder that affects the brain and other systems. Debilitating fatigue is
usually the most prominent symptom. Other common symptoms include sleep
problems, body pain, and mental confusion ("brain fog"). Emotional problems such as
depression, anxiety, irritability and grief are common.

Because it is a chronic and severe illness, CFS affects many parts of patients' lives,
creating many challenges and requiring many adjustments. Patients have to fight to
control their symptoms and adapt their lives to the limits imposed by their illness.
Adaptations may include reducing or eliminating paid work, reducing family
responsibilities, coping with increased stress and intense emotions, and accepting loss.

The severity of CFS varies greatly. Although some patients continue to lead relatively
active lives, others are confined to home or even to bed. The average case of CFS
creates moderate to severe symptoms and reduces the person's activity level by 50% to
75%.
Symptoms

People with CFS usually experience several or even many symptoms. (The list of CFS
symptoms can contain several dozen items.) The severity of symptoms often ebbs and
flows ("waxes and wanes"). At one time one symptom may be the most prominent, and
later another symptom. The four most common symptoms are fatigue, pain, sleep
problems, and cognitive problems.

Fatigue: Fatigue is experienced as profound exhaustion that can be caused by low

levels of activity or for no apparent reason. Fatigue is often disproportionate to the
energy expended and lasts longer than it would in a healthy person ("post-exertional
malaise"). Fatigue can be intensified by a few factors, including overactivity, sleep
problems, poor physical condition, stress, emotions and poor nutrition.

Pain: Pain can be experienced in the joints or, more commonly, as generalized body
pain that is often described with metaphors like feeling crushed by a trailer. Pain can be
intensified by overactivity, unrefreshing sleep, anxiety and stress, and atmospheric
changes.

Poor sleep: Sleep is often experienced as non-restorative or non-refreshing. When they

get up, patients often feel more tired than before going to bed. Sleep problems are
usually part of the disease, but can be intensified by other factors, such as stress,
overactivity, and the absence of a good sleeping environment or good sleeping habits.

Cognitive problems: Most CFS patients experience cognitive difficulties, often called
"brain fog." Cognitive problems include feeling confused, difficulty concentrating,
word-finding problems, and lapses in short-term memory. Brain fog can be reduced by
limiting activity, getting adequate rest, managing stress, and limiting sensory input.

Other symptoms: Many times patients also experience other symptoms, which creates
more discomfort. The most common additional symptoms include: headache, low-grade
fever, sore throat, tender lymph nodes, anxiety and depression, ringing in the ears,
dizziness, abdominal pain (gas, bloating, periods of diarrhea and/or constipation),
allergies and rashes, sensitivity to lights and sounds, abnormal temperature sensations
such as chills or night sweats, weight changes, and alcohol intolerance.

Who gets CFS?

CFS is a common illness. Research suggests that there are probably 800,000 or more
adults with CFS in the United States. In addition, children and adolescents also suffer
from CFS. Research has rejected the older idea of CFS as "yuppie flu." The disease
affects all racial and economic groups, attacking vulnerable populations more frequently
than upper-middle-class whites. About two-thirds of the patients are women.

Diagnosis

Since there is still no diagnostic test to identify CFS or any proven physical marker for
the illness, it can be difficult to diagnose CFS. Several different illnesses can cause
severe fatigue and other CFS symptoms. The disease is often diagnosed with the criteria
developed in the USA in 1994 by an international consensus committee organized by
the American Centers for Disease Control (CDC). With this guide, CFS is diagnosed in
a two-step process. First, a thorough medical examination and laboratory tests are used
to exclude other diseases that have similar symptoms. These include thyroid problems,
anemia, Lyme disease, lupus, MS, hepatitis, sleep disorders, and depression. The doctor
also needs to consider the possibility that CFS symptoms, especially fatigue and
cognitive problems, are side effects of one or more medications taken for another
condition. Second, once other diseases are excluded, a patient is considered to have CFS
if he or she meets two other criteria:

 The patient has experienced new, debilitating fatigue for at least several months
that requires a substantial reduction in activity.
 The patient reports having four or more of the following eight symptoms:
1. Impaired memory or concentration (mental confusion).
2. Sore throat
3. Tender lymph nodes in the neck or armpit
4. Muscle pain
5. Joint pain without redness or swelling
6. New or different type of headache
7. Non-restorative sleep
8. Extreme fatigue after activity ("post-exertional malaise")

A more recent Canadian definition emphasizes five symptoms: fatigue, post-exertional

malaise, sleep impairment, pain, and cognitive problems.

It is important to note that the presence of CFS does not exclude a person from also
having other diseases. A majority of people with CFS also have fibromyalgia. Other
illnesses often found in people with CFS include: irritable color syndrome (IBS),
candida (fungal infection), food and chemical allergies, depression, and sleep disorders
such as apnea and restless legs syndrome.

Causes

The cause of CFS is unknown. Some believe it is caused by an agent entering the body,
while others believe it is due to a body response, possibly to multiple agents. Because
CFS can appear in both clusters and individual cases, and because it manifests with a
wide variety of symptoms and a wide range of severities, some researchers suggest that
CFS may well turn out to be several or even many diseases.
Future research will decide whether it is one or more diseases.

Treatments

Given the lack of understanding of the cause and the absence of a cure, treatment for
CFS focuses on controlling symptoms and improving quality of life. Medical treatment
is tailored to the individual patient, often focused on addressing the most concerning
symptoms, such as sleep disorders and pain. Since there is no one medication that works
for everyone, there is often a period of experimentation to find out what works for the
patient in question. Medications may need to be changed periodically because they may
lose their effectiveness. Patients usually start with very low doses.
Many CFS experts recommend the approach we take in this book: use medical
treatments where appropriate, but focus on lifestyle adjustments such as pacing, stress
management, and getting good support. Self-management techniques are often the most
powerful strategies for treating CFS and FM. CFS/FM physician Dr. Charles Lapp
summarizes this view when he states, "To treat CFS or FM there is no medication,
potion, supplement, herb or diet that can compete with lifestyle change."

Fatigue: The main and probably most effective strategy for controlling fatigue is to
adjust the level of activities to the limits imposed by CFS, what we call "living within
the energy envelope" (See Chapter 9.) Living within the limits It includes strategies
such as setting priorities, getting tested regularly, doing activities for short bursts, living
on a schedule, and managing special events like vacations and outings.

Fatigue can also be reduced by addressing pain and lack of sleep, because both intensify
fatigue. Fatigue also has additional causes such as stress, emotions, lack of physical
fitness and poor nutrition. Managing stress, exercising, and eating healthy can help
reduce fatigue.

Pain : As with fatigue, pain is a reflection of the limits imposed by the disease and this
is why pacing is usually useful. Recognizing activity limits and staying within them,
doing activities for short bursts, switching from one task to another, and resting
regularly – all reduce pain. We achieve the same with addressing fatigue and poor sleep.
When we feel tired we experience pain more intensely, which is why reducing fatigue
also reduces pain. Similarly, sleeping poorly intensifies pain, which is why sleeping
better also helps control pain.

Some pain relief can also be achieved with medications: over-the-counter products such
as aspirin and other over-the-counter pain relievers, pain relievers such as Ultram
(Tramadol) and in some cases narcotics, prescription medications whose primary intent
is sleep, and antidepressants such as Elavil ( Amitriptyline), Prozac (Fluoxetine) and
Paxil (Paroxetine).

Sleep: Sleep can be improved with good sleep habits and an environment that is
conducive to good sleep. Sleep-related habits include having a regular bedtime and
wake-up time, limiting daytime naps, avoiding caffeine and other stimulants before bed,
and practicing relaxation to fall asleep. A good environment includes absence of noise,
a good bed and the appropriate temperature. Reducing pain with exercise or a bath, or
eliminating worries can also help improve sleep.

Medications commonly used to treat sleep problems include over-the-counter products

such as melatonin and valerian, antihistamines such as Benadril (Diphenhydramine),
clonazepam (Clonazepam), (Klonopin), tricyclic antidepressants such as Amitriptyline
(Elavil), benzodiazepines such as Halcion ( Triazolam), and the hypnotic Ambien
(Zolpidem). A combination of two drugs is often prescribed, one to initiate sleep and
one to maintain it.

Cognitive problems: As with the other symptoms, the most effective way to address
brain fog is to use a combination of approaches. Strategies that often help with CFS,
such as pacing and stress management, also help control brain fog. Other techniques
often used by patients include seeking good sleep, limiting sensory input, using lists and
other reminders, having daily and weekly routines, and keeping the physical
environment tidy.

There is more about therapeutic options for these four symptoms in Chapter 8.

Stress, Emotions, Support & Loss: As we mentioned before, CFS has comprehensive
effects, affecting many parts of the patient's life and creating additional challenges
beyond addressing the symptoms. A treatment plan should address, in addition to
symptoms, issues such as managing stress and emotions, strengthening support systems,
and accepting losses. If we successfully deal with these additional challenges,
symptoms tend to be reduced, and this is why they are also a form of symptomatic
management.

There is more about stress, emotions, support, and loss in Chapters 13 through 16.

Forecast

So far there is no cure for CFS and its course varies greatly. Some patients, probably
only a small percentage, recover. They are able to resume their pre-illness life with only
minor residue of the illness, such as vulnerability to high levels of stress or reduced
physical vigor. Another larger group achieves notable improvement, but less than full
recovery. The degree of improvement in this second group varies widely. The total of
these two groups is about half of all patients. Unfortunately, others remain quite ill and
some get worse over time.

The course of CFS also varies. Some people with CFS make relatively steady progress,
some go between periods of improvement and time of intense symptoms, while others
have a relatively stable level of symptoms, neither improving nor worsening.

Our program is based on the belief that most patients can find things to help themselves
feel better. These strategies are not intended to cure CFS, but they can help reduce pain
and discomfort, bring greater stability, and decrease suffering.

References

Bell, David. The Doctor's Guide to Chronic Fatigue Syndrome . Reading, Mass.:
Addison-Wesley, 1995.

Berne, Katrina. Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses
. Alameda , Cal.: Hunter House, 2002.

CFIDS Association of America. See "About CFIDS" at http://www.cfids.org/

3: Fibromyalgia
Fibromyalgia (FM) is a common medical condition characterized by widespread pain
and stiffness, fatigue, sleep problems, and cognitive difficulties. The disease does not
damage tissues, is not progressive, nor is it fatal. The severity of FM varies greatly from
one patient to the next. Some patients continue to work, although a significant minority
are disabled.

FM touches many parts of a patient's life and affects the lives of those who know it.
Patients struggle to control symptoms and adapt to the limitations and stress that come
with their illness. They also have to struggle with loss, uncertainty, and often a lack of
understanding from others. Family members also have to cope with losses and often
have to accept new responsibilities. They are usually economic consequences; many
patients stop working, reduce their work hours or retire early.

Symptoms

FM is characterized by the presence of multiple symptoms. Its severity often goes up

and down. The most common symptoms are pain, sleep problems, fatigue and cognitive
problems.

Pain: Generalized pain is the most relevant symptom of FM. Pain that is described as
aching, burning, or stabbing is usually felt throughout the body, although it may start in
one area and spread or move from one area to another. It may be accompanied by
neurological problems such as tingling, burning or numbness in the hands, arms, feet,
legs or face. Pain can intensify with overactivity, non-restorative sleep, anxiety and
stress, and with atmospheric changes.

Poor sleep: The second most common symptom of FM is poor sleep. The patient may
have trouble falling asleep or may wake up frequently. In most cases, sleep is not
experienced as restorative or refreshing, probably due to the limited time spent in deep
sleep. Most patients suffer from a sleep disorder, but poor sleep is also caused by other
factors such as stress, overactivity and lack of a good environment or good sleeping
habits.

Fatigue: About three out of four FM patients report having fatigue of the type that
people with CFS suffer from. Characterized by a profound feeling of exhaustion, fatigue
can manifest as listlessness, drowsiness, and decreased exercise tolerance. Like pain,
FM fatigue can be intensified by overactivity, poor sleep, emotions and stress.

Cognitive problems: Many FM patients experience cognitive difficulties. Often called

"brain fog" or "fibrofog," cognitive problems include confusion, word searching,
memory lapses, and difficulty concentrating. Fibrofog is often aggravated by excessive
activity, non-restorative sleep, strong emotions, stress, and too many sensory
stimulations.

Other symptoms: Many other symptoms can accompany FM and thus create more
discomfort and frustration. Other common additional symptoms include tension
headaches or migraine, strong emotions such as depression and anxiety, jaw pain,
ringing in the ears, dizziness, rashes, sensitivity to light, sounds, smells and
temperature, and dry eyes or mouth.
Who gets Fibromyalgia?

Like CFS, fibromyalgia is a common illness. Estimates vary, but there are probably at
least four to five million people in the US with fibromyalgia, possibly many more.
Studies suggest that more than 90% are women.

Diagnosis

There is no diagnostic marker for the disease in the patient's blood, nor evidence of the
disease showing up on X-rays or other tests. Given the absence of diagnostic tests, FM
is identified through the patient's report of their symptoms, a medical history, and a
physical examination. Diagnosis is often a lengthy process. Studies suggest that it takes
an average of five years after symptoms first appear to get a diagnosis.

Fibromyalgia is diagnosed by identifying a particular pattern of symptoms. The criteria

for diagnosis are:

1) A history of at least several months of pain in many parts of the body (left and right
side, above and below the waist)

2) Pain in at least 11 of 18 specific tender points on the body. Tender points are places
on the body that hurt when pressed. In FM these points are found in particular places
around the neck, shoulders, chest, elbows, lower back, hips and knees.

Tender points

Fibromyalgia can develop alone or in combination with one or more additional medical
problems. More than half of FM patients also experience CFS. Other frequently
reported illnesses include arthritis, lupus, depression, Irritable Bowel Syndrome (IBS),
gastroesophageal reflux disease (GERD), Irritable Bladder Syndrome (interstitial
cystitis), myofascial pain, chemical sensitivity, Lyme disease, sleep disorders such as
apnea and restless legs syndrome, and thyroid problems. The presence of other diseases
can intensify the symptoms of FM. Treating the other conditions often relieves FM as
well.
Causes

The cause of FM remains unknown, but current research focuses on how pain signals
are amplified by the central nervous system (spine and brain). This theory is often called
the "central sensitization" model, it enhances pain as a signal sent to the brain in
response to an event in the body. Patients with FM have high levels of substance P, a
neurotransmitter that communicates pain signals, and low levels of chemicals such as
serotonin and dopamine that calm pain sensations.

There is evidence suggesting a genetic susceptibility to FM. The onset of FM is often

triggered by an illness or trauma such as a fall or accident. There may be multiple
causes for FM, each leading to increased pain.

Treatments

Like treatment for CFS, FM treatment focuses on controlling symptoms rather than
curing the disease. Approaches include medications, alternative treatments and self-help
measures. Medications are often used to improve sleep and control pain, although their
effectiveness varies greatly from patient to patient. Drug treatments are usually
developed through experimentation with different medications and dosages. Exercise is
often recommended, both to reduce pain and stiffness, and to reverse poor physical
condition. Lifestyle adjustment strategies used with CFS, such as pacing and stress
management, are also appropriate for FM patients.

The three principles that guide CFS treatment also apply to FM: 1) the use of multiple
strategies, 2) experimentation, and 3) emphasis on lifestyle change. Since patients with
FM usually have more than one symptom, and since each symptom usually has more
than one cause, it is useful to use a combination of treatments and management
strategies. Since there is no standard treatment for FM and treatments that are helpful
for a period may later be ineffective, patients have to experiment to find what works for
them. Lifestyle adjustments that are cheap and safe typically produce more predictable
results.

Pain: Pain relief is often sought with medications, which may include over-the-counter
or prescription pain relievers, prescription medications primarily for sleep, and
antidepressants. Exercise is often used to reduce stiffness and strengthen muscles.

As with CFS, pacing is an effective strategy for managing FM pain. Staying within
activity limits, doing activities for short periods of time, changing tasks frequently, and
resting regularly – all of these can help. When a person is tired or under stress they feel
pain more intensely. Therefore, reducing fatigue and stress also reduces pain. Similarly,
sleeping poorly intensifies pain, which is why improving sleep also helps control pain.
Other common pain management strategies include heat and cold treatments, massage,
and paying attention to body mechanics (how to position your body and how to move
it).

Sleep: Treating sleep is another area where an experimental approach with several
strategies is useful. No medication has proven useful in treating sleep problems in all
patients with FM. It also happens that there are medications that are effective for a
season, then become ineffective. Medications commonly used to treat sleep problems
include over-the-counter products such as melatonin and valerian, antihistamines such
as Benadril (Diphenhydramine), clonazepam (Clonazepam), (Klonopin), tricyclic
antidepressants such as Amitriptyline (Elavil), benzodiazepines such as Halcion.
(Triazolam), and the hypnotic Ambien (Zolpidem). A combination of two drugs is often
prescribed, one to initiate sleep and another to maintain it.

Sleep can be improved with good habits such as going to bed and waking up at the same
time, limiting daytime naps, avoiding caffeine and other stimulants before bed, and
practicing relaxation before falling asleep. Good sleep is also promoted by a quiet
environment and an appropriate temperature in the bedroom. Reducing pain before
going to bed and letting go of worries with techniques such as a worry log or a to-do list
for the next day can also help improve sleep.

Fatigue: Fatigue is often addressed with lifestyle changes, especially pacing. Pacing
includes strategies such as setting priorities, resting regularly, doing activities for short
periods of time, living according to a schedule, and managing special events, such as
outings and vacations. Fatigue can also be decreased by addressing pain and sleep
problems, because both intensify fatigue. Managing stress, exercising, and eating
healthy can help reduce fatigue by addressing other causes of fatigue: stress, poor
physical condition, and poor nutrition.

Cognitive problems: Strategies that generally help reduce FM symptoms, such as

pacing and stress management, also help reduce brain fog. Other techniques that often
produce some fog control include sleeping well, limiting sensory input, using lists and
other reminders, having daily and weekly routines, and maintaining an orderly physical
environment.

More about treatment options for these four symptoms in Chapter 8.

Stress, emotions, support and loss: As we mentioned before, FM has comprehensive

effects, affecting many parts of the patient's life and creating many challenges. A
treatment plan should address, in addition to symptomatic management, issues such as
managing stress and emotions, strengthening support systems, and accepting losses. If
we successfully deal with these additional challenges, they will usually reduce
symptoms, and this is why it is also a form of symptomatic management.

More about stress, emotions, support, and loss in Chapters 13 through 16.

Forecast

FM is neither progressive nor fatal. Just as there is no cure for CFS, there is no
treatment that will cure FM. But as with CFS, some patients experience spontaneous
recovery and many achieve notable improvement. In fact, the most likely outcome for
FM is improvement, experienced by about half to two-thirds of patients. A few
medications are being studied to treat FM; In a couple of years the first prescription
drug could be approved specifically for FM.

As with CFS, the course of FM can vary. The location and severity of pain can change
over time. Symptoms may be intermittent, fluctuate, or persist. Triggers for worsening
symptoms may include overactivity, inactivity, stress, trauma, repetitive movements,
poor sleep, strong emotions, and changes in the weather.

References

Fransen, Jenny and Jon Russell. The Fibromyalgia Help Book: A Practical Guide to
Living Better with Fibromyalgia . St. Paul Minn. : Smith House, 1996.

Goldenberg, Don. Fibromyalgia . New York: Penguin Putnam, Guilford Press, 2002.

Matallana, Lynne. The Complete Idiot's Guide to Fibromyalgia . New York: Penguin,
2005.

Starlanyl, Devin and Mary Ellen Copeland.Fibromyalgia & Chronic Myofascial Pain:
A Survival Manual . Oakland: New Harbinger, 2001.

4: Handle Yourself
With chronic illnesses like CFS and FM you have a different role than the patient with
an acute illness. With short illnesses you can often depend on a doctor to provide a
solution or the illness will resolve itself. But CFS and FM are different. Neither of them
has a medical cure. Conditions that cannot be cured must be addressed.

A manager is someone responsible for making decisions. You are the expert of your
condition. You are the person who knows your situation best, and possibly know more
about CFS or FM than your doctor. It doesn't matter if you want the role or not, you are
the day-to-day manager of your condition and your decisions will have a great effect on
your quality of life.

Part of managing a chronic illness is treating the symptoms. Doctors can be helpful, but,
in chronic illnesses, patients can do things themselves to limit the effects of symptoms.
You'll read a lot about it in Part 3. The role of the patient in chronic disease is also
greater, as described in Chapter 1. Chronic illnesses like CFS and FM are more than
medical conditions. Your illness affects many parts of your life, which is why managing
it requires paying attention to issues such as stress, emotions, relationships, and money
(see chapters 13 to 16.)

As a self-manager you have a few tasks. One responsibility is to gather information,

learn everything you can about your condition and the options for treating it, so you can
make informed and intelligent decisions. You also face the challenge of learning new
skills. Third, you need help from appropriate professionals. Since the relationships you
develop with doctors and other healthcare professionals are crucial, it is important that
you find people you trust and feel comfortable with. You have to take an active role in
your care.

This chapter discusses two of these tasks: educating yourself about your illness and
developing problem-solving skills. The next chapter is dedicated to building
relationships with doctors and other healthcare professionals. Chapters 6 and 7 give
practical suggestions for two other skills. Chapter 6 gives step-by-step instructions for
achieving short-term goals. Chapter 7 explains how to use written notes to improve your
health.

Education

Learning about CFS and FM may include conversations with your doctor, visits to
bookstores and libraries, and searching the Internet. This section discusses three
additional sources of information.

Organizations

Patient organizations such as the CFIDS Association of America for Chronic Fatigue
Syndrome and the Arthritis Foundation for Fibromyalgia are helpful sources. They offer
information about CFS and FM. They can also provide you with information on local
support groups and can help you find a doctor.

The CFIDS Association is a national organization with a website ( http://www.cfids.org/

) and a quarterly patient magazine. The organization maintains a list of local support
groups. The Arthritis Foundation is also a national organization and sponsors local
activities in many locations throughout the United States. The national organization has
an extensive website ( http://www.arthritis.org/ ), offers Arthritis Today magazine, and
publishes many books and pamphlets. Sponsors support groups, classes, and aquatic
exercise programs in many communities. Her classes include the "Arthritis Self-Help"
Self-Help course with material on fibromyalgia. Other sources of information about
fibromyalgia include the Fibromyalgia Network ( http://www.fmnetnews.com/ ), the
National Fibromyalgia Association ( http://www.fmaware.org/ ), and the Oregon
Fibromyalgia Foundation ( http:// www.myalgia.com/ ).

Translator's note:
In Spanish you can contact, for example, the following websites.
The United States Department of Health has information in Spanish at the following
link:
http://www.niams.nih.gov/Portal_En_Espanol/Informacion_de_Salud/Fibromialgia/
default.asp
And there is very good scientific information, based on evidence in these links
http://www.institutferran.org/fibromialgia.htm
http://www.institutferran.org/fatiga_cronica.htm
http://www.institutferran.org/intolerancia_quimica.htm
http://www.fundacionfatiga.org/

Support groups

Support groups can also be a good source of information. They can refer you to doctors
who treat CFS and FM. Likewise, groups can offer models of successful management
for the disease. People who live well with your condition can teach you practical
strategies and offer inspiration. Today this type of support is not limited to one-on-one
meetings. Similar experiences are available on the Internet, with online chats and
message boards.
Support groups are very heterogeneous and not all of them are useful. Some are
negative in tone or may be dominated by one or two people. Look for a group that gives
you a sense of belonging, that encourages balanced participation among many group
members, that offers you something positive to take home, and that provides models for
living successfully with an illness. (More in the discussion of support groups and
classes in Chapter 15.)

You: Self-Observation

You are a source of information about your illness, perhaps the most important. You
live with your condition, day after day, and you know it intimately. With self-
observation you can learn a lot about your body's needs, what helps you, and what
causes things to get worse. You've probably already identified a few things that
intensify your symptoms. Factors that are often mentioned in our groups include doing
too much, sleeping poorly, traveling, financial problems, stressful relationships, worries
about the future, food or chemical allergies, light or sound (sensory overload), too much
time with other people and family or other responsibilities.

You probably also have ideas about what helps you feel better and what gives you some
control over your illness. When we ask people in our groups what helps them and gives
them a sense of control, they often answer things like the following:

 Accept my limits, pace myself

 Rest regularly during the day
 Seek support from other patients
 Take medications to control symptoms
 change my diet
 Ask others for help
 Avoid people and situations that trigger symptoms
 Look inside, spirituality
 Laughter and other enjoyable activities
 Practice relaxation and stress reduction

By experimenting, you can increase your sense of control and record the results.
Whether you record data as described in Chapter 7 or with a less formal self-monitoring
system, discovering links between what you do and your symptoms gives you a sense of
control.

In class we have seen some dramatic examples. For example, a person with a severe
case of CFS experimented with the length and frequency of his breaks. Instead of taking
two long breaks each day, which he practiced before going to class, he tried taking
several short breaks every few hours. With this different rest schedule, she cut her total
rest time in half, from six hours to three, and without increasing her symptoms. By
making this simple change he managed to add several productive hours to the day.
Other people have increased the amount of work by determining the time of day when
they are best. They can do twice as much if they schedule their most demanding tasks
during their best times of the day.

Experimentation is the key, try something different to see if it works. We call it being
your own CFS or FM scientist, a process in which you are both the researcher and the
researched. Given the tremendous variation in symptoms and severity in patients with
CFS and FM, developing an individualized approach to your illness, based on your
unique circumstances, offers the best chance for improvement.

Solve problems

Because your illness and other parts of your life are constantly changing, you are faced
with the need to adapt. For example, the medications you take for pain become less
effective or your symptoms worsen and you wonder if you should stop working and
take time off work. Using a problem-solving approach can help you respond to your
constantly changing situation. This section describes troubleshooting as a three-step
process.

1) Select a problem

The starting point is to identify a problem that is important to you and feel ready or
obligated to work on it now. Usually it is something that interferes with your life, that
complicates your life or prevents you from doing something that is important to you.
Below are three examples.

For years, before you got sick, you were in charge of preparing dinner for the whole
family. You decorated the house yourself and cooked all the meals. Even now that
you're sick and too much activity triggers a symptomatic flare, you feel pressure to
make your family members enjoy themselves in the same way as before. You would
like to find a way to celebrate the holiday without causing an outbreak.

Doing your weekly laundry and cleaning the house tires you so much that you need
extra rest for two days afterwards. You feel obligated to do chores because you hate
having a messy house or not having clean clothes, but you realize that, due to your
limited energy, you can't do them like you did before you got sick.

You're back in school part-time, but cognitive problems (often called "brain fog") are
making it difficult for you to study. You want to do things well, but you realize that you
are not able to read for more than half an hour at a time. You are worried that you will
not be able to finish your homework on time.

In each of these situations, you may find yourself caught between two unattractive
solutions: trying to do things as before, but with a high level of symptoms, or stopping
doing something you value. Having that conflict can motivate you to see your situation
differently and to look for alternatives.

2) Explore causes and possible remedies

The second step is to think about what factors are behind the problem, and then
brainstorm how to handle the situation differently in the future. Problems often have
multiple causes, and so a combination of solutions may be appropriate. The idea in this
phase is to see your situation transparently and consider as many possibilities as you can
imagine. Here we describe a way to do this second step in our three examples.
Celebrate the holidays : Family customs and expectations conflict with your current
boundaries. You need help or perhaps you have to pass on your old role to others.
Practical solutions to your family dilemma include: having the celebration at home, but
having others bring the food; have the party at home, but without cooking; rotate the
party among other family members; and go to a restaurant for your holiday meal.

Each solution requires you and your family to examine and modify the way you handle
party work. A solution to your dilemma will likely involve conversations between
family members during which you will have to be assertive about your limits and needs
for help. The situation is also symbolic of the fact that you have changed. Both you and
the people around you have to adjust.

Just like with your change of identity, other family members have to adapt too. Change
your role in the family and the role of family members. You may miss some of your
previous responsibilities, and family members may resent having new ones. There are
also psychological adjustments. Abandoning your role as a guest for the celebrations is
only part of a broader experience of role loss and the meaning of new identity. (See
Chapter 16 on talking about the loss.)

Housework : You are not able to do housework like you did before. A possible solution
is to spread the tasks over several days, instead of doing everything in one day. Or you
can continue doing them all in one day, but in short bursts, resting periodically. Both
solutions are examples of pacing, which is discussed in Chapter 10.

Another possible solution is to clean less frequently. (One person wrote that they now
see dust as something that "protects the furniture.") As with some of the solutions for
family parties, this involves changing your ideas of what you think is appropriate. Two
other solutions involve getting help from others. You could ask family members to help
you share the work. For example, children can clean their own room and do their own
laundry. Or you can choose to pay for a cleaning service.

A final possibility is to move to a smaller house. If cleaning the house was an example
of general household responsibilities becoming too much, you might consider
simplifying your life by moving to a house that's easier to maintain. People in our
groups have used all of these strategies.

School : Your hopes for school conflict with your current abilities. One solution would
be to reduce the load of your classes. Experiment with the time of day to study. One
person in one of our groups did it and found that he could study longer and retain more
information if he studied in the afternoon, when his mind is more agile.

Another solution is to ask the school authorities to include you in the "Americans with
Disabilities Act." Several people in our groups have had success with this strategy. The
adjustments they made included having more time to complete exams and more time
than normal to complete a course syllabus. (School-aged patients may receive additional
help through Special Education.)

Other remedies may include taking rest breaks during studying and practicing stress
reduction. Breaks allow you to recharge your batteries and can be a useful way to get
more done than studying in a single session. Stress reduction may help if you push
yourself too hard. (Rest is discussed in Chapter 10. Relaxation techniques are discussed
in Chapter 13.)

3) Experiment with solutions

The third step is to try several solutions and evaluate the results. Some potential
remedies probably won't work, but others may help. Your final solution may be a
combination of several approaches. I suggest you consider your efforts as a series of
experiments. With this point of view you will be able to more easily accept
disappointments and move on to the next attempt.

Here's how the third step could end up in the 3 examples.

Celebrate the holidays : you talk to your husband and children about a new
distribution of tasks for the holiday. You agree to celebrate it this year in a less
ambitious way. However, the rest of the family is not very happy. They have never
believed that you are really sick. You and your husband agree to have the party for the
family at your house for at least one more year. He and the children share responsibility
for the kitchen. You conclude that you may need several years to organize a new routine
that all family members will accept. You also decide to accept that some members of
your large family may never accept your boundaries. You join a mutual aid group and
find that it helps to talk to other patients about coming to terms with the loss of your
previous role in the family.

Housework : After talking with friends in a support group, you decide to try a
combination of strategies. You ask your children to clean their own room and wash their
own clothes. You also decide to reduce the household chores you do, clean less
thoroughly, and have professionals do a thorough cleaning once or twice a year.
Following another patient's suggestion, you decide to keep a journal to explore your
feelings and thoughts about losing your ability to "keep up."

School : You experiment with the time of day you study, but you don't find any
differences except that studying after 8 p.m. doesn't work well for you. Try taking a ten-
minute break when your brain fog increases and find that this helps your concentration.
You ask the professor to give you more time to take an exam, but he refuses, saying that
he doesn't think it's honorable to the other students. Instead of arguing with him, you
decide to do what you can during the allotted time, but you plan to visit the Office of
Student Services to ask about the accommodations your school offers under the
Americans with Disabilities Act.

Summary

There are a few principles to keep in mind while you are troubleshooting.

 Explore variety of possible solutions . There are often several ways to solve a
problem. Looking at your situation from various perspectives can help you
recognize different approaches. Some problems are solved with a combination
of strategies. Some approaches may not be successful.
 Ask what resources are available . In many cases you can solve the problems
yourself, brainstorming possible solutions and trying one or more of them. But,
 sometimes you may need help, to understand your problem or to solve it. As we
saw in the first example, family members could help celebrate the party. Family
members can also help with household chores; Paying a person is also an option.
For the educational problem, it may be useful to use legal accommodations.
 Practice assertiveness . Your illness will require making changes, both in your
role and in that of the other members of your family. Tasks such as weekly
shopping and organizing a big family party at your house may need to be
renegotiated. You have to adjust to the loss of your role, and others will have to
assume new responsibilities.
 Make mental and emotional adjustments . Having a serious illness requires
that, based on the fact that you have new, more restrictive boundaries, you adopt
new expectations for yourself. You will probably have to reduce your level of
activities and you will have to make psychological adjustments, accepting that
the person you were before you became ill has been replaced by a new, more
limited person.

Given the nature of CFS and FM it is good to have a flexible approach to managing
your illness. There is no standard treatment for these diseases, nor any commonly
prescribed remedy. Likewise, treatments that help for a while may become ineffective
later. Finally, each person's life situation is unique and continually changing. For all of
these reasons, the management of CFS and FM is individualized and constantly evolves
in response to circumstances. Problem Solving offers a flexible and practical approach
to managing chronic illness.

Problem solving is one of several skills you may find useful in coping with your illness.
I will explain more in the following chapters. As you develop problem solving and other
skills, you can gradually incorporate them into your daily life. This process takes time
and can be frustrating. At first attempts to try a new skill can be clumsy and have few
good results. It can be tempting to stick with the old way. At that moment, I hope you
remember that the likelihood of you improving your quality of life depends a lot on the
fact that you accept responsibility for those things that you can control and that you
develop habits that promote a better quality of life.

5: Create Your Healthcare Team and

Work with It
With a chronic illness you play a different role with your health professionals than the
usual role with an acute illness. Since your condition is relentless, and you are your
daily manager, the patient/professional relationship is more like a partner relationship in
which you play an active role, selecting members of your healthcare team and working
with them to improve. your quality of life.

It's reasonable to expect some things from people who help you. You have the right to
have professionals who know about your illness or are willing to learn about it, who
believe your illness is real, who treat you with respect, and who are willing to
experiment to find treatments that work for you. You also have responsibilities. You
must have realistic goals for your providers, you cannot expect them to cure you, but
you must see them as partners in your efforts to feel better. I also suggest treating your
appointments as if they were professional meetings. (See the section titled "Visitors"
later in this chapter.)

Help sources

Given the complexity of chronic illness and the likelihood of multiple medical
problems, you may decide to bring together a group of professionals to help you live
better. You will have to explain your situation and your special needs to each of them.

Doctors : Doctors who typically care for patients with CFS and fibromyalgia include
both primary care doctors and specialists. The latter include rheumatologists (doctors
who specialize in arthritis and related diseases, including fibromyalgia), psychiatrists
(doctors who specialize in mental and emotional problems and who prescribe
medications for problems such as anxiety and depression), pain specialists, and doctors
who treat mental disorders. of the dream.

Other medical professionals : Doctors may refer you to physical or occupational

therapists, who can help you address problems through physical manipulation, exercise
training, and adjustments to daily activities. Many patients also receive spinal
adjustments from chiropractors.

Other sources of help : Psychologists and therapists can help you with emotional
problems triggered by a chronic illness. Both work with individual patients and
families. There are massage therapists who provide relief with manual treatments.
Nutritionists address problems with nutrition and food allergies. Teachers and group
leaders may help you if you sign up for exercise programs or yoga or Tai Chi classes.
Finally, there are fellow patients who, although not professionally trained to treat CFS
or FM, can provide support, understanding, and inspiration.

Find a doctor

Finding a sensitive and appropriate professional can be a frustrating task. There are
studies that suggest that it typically takes several years to get a diagnosis of CFS or
fibromyalgia, during which time patients are often rejected and their complaints
ignored. I would encourage you to persevere in your search for doctors who believe you
when you say you are sick and who treat you with respect. In our experience, patients
who have looked for friendly and knowledgeable doctors have usually found them.

How to find a doctor who is knowledgeable and trustworthy? A good starting point is
referrals from other patients. Many times support groups are a good way to meet other
patients. The CFIDS Association of America maintains a state-by-state list of CFS
support groups in the United States. They will send you a free list of groups in your
state. (You can contact them at 800/442-3437 or through their website:
http://www.cfids.org/ .) The Arthritis Foundation sponsors fibromyalgia support groups
in many locations and offers an online directory of their groups on their website:
http://www.arthritis.org/ . The local offices of the foundation provide addresses of
doctors. For other lists of FM support groups see the Immune Support website (
www.immunesupport.com/supportgroups/ ) and the National Fibromyalgia Association
website ( http://www.fmaware.org/ ).

Other resources for finding doctors include the Fibromyalgia Network (

http://www.fmnetnews.com/ ), the "Good Doctors" list on Co-Cure ( www.co-
cure.org/Good-Doc.htm ), the website from the FMS Community (
www.fmscommunity.org/findingadoctor.htm ) and (
www.sover.net/~devstar/provider.htm ), Devin Starlanyl's website.

Some of the doctors in Spain are at the following link:

http://www.co-cure.org/ES_ALL.htm

Medical visits

Your doctor and other health care providers are important allies in your efforts to live
well with your illness. This section contains some suggestions for making these
relationships productive. I will focus on the doctor/patient relationship, but these
principles can be applied to most other professionals as well.

Since you have a chronic condition you will have the opportunity to establish chronic
relationships with your doctors. As with other significant relationships, you should feel
comfortable expressing your ideas and discussing alternatives. You should also be able
to negotiate a mutually acceptable treatment. Since there are no standard treatments for
CFS or fibromyalgia, and treatments may only be effective for a period of time, you and
your doctors should agree that treatment will involve experimentation. Some of the
experiments may work; others probably won't work; and others will help, but only for a
season.

If you have found supportive doctors who want to help you feel better and who are
willing to experiment to find what treatments will help you, the biggest obstacle to a
good relationship will be time. Particularly today, doctors work to a strict schedule that
often leaves them as frustrated as their patients. If you see your appointments as
professional meetings, you will be able to structure your time productively. One way to
make your visits productive is by "taking PART" The letters stand for Prepare, Be
Active, Repeat, and Take Action. (This acronym is adapted from the doctor/patient
relationship advice in the self-help book "The Arthritis Helpbook".)

Prepare

Prepare for the visit by asking yourself why you are going and what you expect from
the doctor. Make a list of your questions and concerns. Are you worried about a new
symptom? Would you like a new medication? Do you need the doctor to prepare a
report to request a work disability? Write down your concerns, but keep in mind that
you probably won't be able to address more than two or three issues in one visit.

As part of your preparation you could rehearse how to concisely describe your
symptoms and your situation. Studies suggest that doctors give the patient about 20
seconds to describe their concerns before interrupting; For this reason, try to be
prepared to succinctly say what worries you and what you want from the doctor.
Describe your problems and goals concretely so the doctor knows they can be addressed
within the limitations of the appointment. Instead of saying, "I have a lot to talk about
today," start with something like, "I want to talk to you about my pain."

You could say during your initial explanation when your symptoms started, where they
are located, and the changes they cause in your life. Also think about informing about
previous treatments, their effectiveness and drug side effects. If you are not sure
whether you will know how to explain yourself adequately or whether you will
remember the doctor's answers, you could ask a family member or friend to accompany
you.

Be active

Try to have an active role during your appointment. Start the visit by briefly describing
your most important concerns. You could say something like, "I've come to ask you
how to improve my sleep. I have trouble falling asleep. I wake up often during the
night. And the medication I take seems to have lost its effectiveness." You could
include a reference to your thoughts and feelings about the problem. For example, if the
problem is sleep, you could say, "I'm worried because overall I'm better, and I'm afraid
that if I sleep poorly it will make all the other symptoms worse and I'll go back to where
I was two years ago." If you have written a list of your concerns, you give it to the
doctor.

Aside from speaking clearly and concisely about your concerns, try to interact with the
doctor to play an active role during the meeting. If there is something you don't
understand, ask him to explain it to you again. If you think that the proposed treatment
will not work or if you are not willing to try it, you should tell your doctor. Ask when
the effects of a treatment are supposed to start to appear and how long you will have to
continue with it. Ask about the side effects of the proposed treatments and what
alternatives are available, both medical and regarding changes in your lifestyle. Also ask
about the likely results if you don't treat yourself. If your insurance does not cover all
the proposed treatments, make your financial restrictions now.

Repeat

To check that you have understood everything, you repeat to the doctor the key points
he has mentioned. For example, you could state that you understand recommends that
you treat your sleep problem with two medications, one to help you fall asleep and one
to help you stay asleep.

If you don't understand it or it is not clear to you, ask the doctor to repeat it. The goal of
repeating is to make sure that you and the doctor understand the same thing and to clear
up any misunderstandings of the diagnosis and the steps to take after the visit.

Take actions

When the appointment ends, make sure that what you expected from the consultation
has been clarified. Imagine that you have returned home and you want to remember the
entire visit: do you have all the information you need and have you understood what the
doctor has asked you to do?
If you have talked about a medication, do you have the prescription? If you have it, have
you understood how long you have to take it, how many times a day and when, and
what the possible side effects are? What about tracking? Does the doctor want you to
come back? When? Can you check on him by phone or can you only contact him if you
have a problem? If you are not sure what to do after the visit, or if you think you will
not remember, write down the doctor's instructions or ask him to do it himself.

Reference

Lorig, Kate and James Fries. The Arthritis Helpbook . Cambridge, MA: Perseus, 2000.
Fifth ed.

6: Objectives and Goals

This chapter describes a key skill for self-management. Goal setting is a technique for
achieving objectives by taking a series of small, realistic steps. If you use this skill, you
turn your hopes and good intentions into concrete plans.

Let's say you've decided to control your symptoms through pacing. You can pursue this
goal in several ways. For example, you can spend more time resting, reduce your
activity level, go to bed earlier, or write down your activities and symptoms. If you
decide to start with a break, how would you continue? Setting goals gives you a step-
by-step answer. (Other self-help programs use this technique, but perhaps call it a
different name, such as making a contract or an action plan.)

Setting goals involves three steps: making a short-term objective plan, carrying it out,
and evaluating the results.

Make a plan

Your plan consists of specific actions that you realistically hope to achieve in the near
future, typically within a week. The goal you set must be concrete and measurable. The
key to success is to be specific when making the plan. Instead of something like "I want
to rest more," you should mark specific actions that are within your control. For
example, you might plan to rest for 15 minutes in the late morning for 4 days over the
next week. The plan you create should answer the following questions:

 What will you do specifically? For example, rest, call a friend or take a walk?
 How much? If your goal is to rest, will you do it for 15 minutes, an hour or
more/less time?
 When? Will you rest in the morning, afternoon, evening, or some combination?
 How often? How many days per week will your goal be? You may want to do
something daily, but you're more likely to be successful if you allow yourself a
"breather" by trying to do something several times a week rather than daily.

Once you have marked your plan you have to determine if it is realistic. To judge
whether a goal is feasible, you have to ask yourself, "How confident am I that I can
complete this goal as I set it?" Respond by scoring between 0 and 10. 0 means "no trust"
and 10 means "full trust." Your confidence level is your estimate of how confident you
are that you can complete your goal in its entirety, it is not a measure of how much of
your goal you will be able to do. A confidence score of 5 means that you are only a little
confident in your success, not that you believe you can complete half of your goal.

If the answer is 8 or more, you have a good chance of succeeding. If your confidence
level is less than 8, try setting a less ambitious goal. For example, you could reduce the
number of times per week. It usually works better if you set a goal to do something four
or five a week, rather than doing it every day. Another way to modify your plan is to
reduce the time of what you want to do, say put 15 minutes instead of half an hour.

If your confidence is low, an alternative response is to ask yourself what could prevent
you from achieving your goal. For example, if you want to exercise outdoors, bad
weather could make it difficult. If you are able to identify the possible problems, you
could have the solutions. Alternatives to exercising in bad weather may be walking on a
treadmill or exercising at home with a video tape. Once you have considered the
alternatives, you ask yourself again if your level of confidence has changed. You stop
this process when you get an answer of 8 or more, because that means that you are fairly
confident in being able to complete the entire objective, just as you have marked it.

Use the following guides to increase your chances of success. First, make your goal
something you want to do, not something others want or something you think you
"should" do. This way your motivation is probably higher and your chance of success is
greater.

Second, start by setting a single goal. This will give you the opportunity to learn how to
set goals. It takes time to develop a new aptitude. The goal of setting goals is to help
you experience playing an active role in managing your illness.

Third, you have to accept yourself as you are and start with a small change. If you do
this you are more likely to be successful and your success will build itself, increase your
self-confidence and encourage you to continue working to improve further.

Tools

Once you formulate your plan, you write it down. In our groups we use an objectives
form divided into three sections. (You can find a blank goal form at the end of the
chapter. There is also a printable version of this and all the other forms in the book on
our website: http://www.cfidsselfhelp.org/ . Click the Library box, then click the link
for "Logs, Forms and Worksheets" and then the Target Form link.)

Write down your goal and your confidence level in the section titled "My goal." Writing
down your intentions helps reinforce your commitment. Other ways to increase the
likelihood of following through include telling other people about your plan and posting
your goal in a place where you're likely to see it frequently, like on the refrigerator.

As the week goes by, you update your efforts by filling out the second section of the
"Results" form. Use this space to write down what you have done and any problems that
have arisen. Writing down your experience is a good way for you to remain accountable
and increase your chances of success.

Assess

At the end of the week, you will evaluate your results by asking yourself how successful
you were in meeting your goal. The two most common problems people experience
when setting goals are not being specific and being too ambitious. The solution to the
first is to ask yourself if your goal answers the four questions: what, how much, when
and how many times. The solution to the second is to ask yourself if your confidence
level is at least 8 on the scale of 0 to 10.

You may have problems, even with a well-defined and seemingly realistic goal. Perhaps
it is because of the unpredictability of your illness that you have not been able to
complete your goal as planned. Or perhaps because your goal is not realistic at the
moment. But, no matter what the results are, you will learn from your efforts. To help
you get something positive, regardless of the results, fill out the "Lessons" section of the
form.

It may be helpful to think of goal setting as a series of experiments. If you achieve your
goal, you have successfully completed an experiment and will gain some control over
your illness. If the results are different from your expectations, you have learned
something useful about your illness by reflecting on your experience.

Goal samples

You can find purpose in virtually any area of your life. Here are some examples.

Rest for 20 minutes in the morning and afternoon

Resting according to a schedule is one of the most common objectives used by people in
our groups. These "preventive" breaks can help control symptoms. You can read more
about rest in Chapter 10.

Go to bed at 10 p.m.

The person who set this goal wanted to reestablish a more normal routine after staying
up later and later. First he set himself the goal of "falling asleep at 10:30 p.m." But she
realized that she couldn't control when she fell asleep, but she could control what time
she went to bed.

Leave the computer after 30 minutes

Some people get brain fog or nausea if they spend too much time on the computer or
doing other mental work. This objective implied placing a limit on the activity. You can
use the goal of doing nothing or limiting the amount of time.

Find a babysitter to help me with childcare

This mother and her daughter both have CFS. The mother thought that if she had
someone several times a week, her daughter would have more company and the mother
would have more free time.

Talk to my wife about our relationship

The man who set this goal was concerned about the increased responsibilities placed on
his wife due to her illness and wondered how they could handle the uncertainty created
by her CFS. Making this commitment in class motivated him to have a long-postponed
conversation.

Read a book for pleasure

This goal was set by a person who thought that family needs and illness had squeezed
out all the pleasure he had in his life. It may seem paradoxical to schedule a game, but it
worked.

A student's experience

To give you a more concrete idea of how goals work, let's look at a student's experience
with her first goal. This person liked the idea of planned rest periods as a way to reduce
their symptoms. (See the discussion of rest in the chapter on pacing.) He accepted the
definition of rest that we used in class: lying down in a quiet place with your eyes
closed. He set a goal of resting 15 minutes a day in the afternoon for the next week. This
objective answered the four questions. He defined what he was going to do (rest), how
much (15 minutes), when (in the afternoon), and how many times (daily).

Then he asked himself how confident he was in being able to meet the planned goal. His
answer was 6, below the minimum level of 8 we suggested. He realized that he didn't
feel comfortable committing to every day and decided to set a goal of four days instead
of every day. With this less ambitious goal, his confidence rose to 8. He noted on his
goals form:

That: rest
How much: 15 minutes
When: in mid afternoon
How often: four days of next week
Trust: 8

He started the week successfully and rested for 15 minutes on Monday afternoon. He
was surprised by how easy it was and woke up with more energy and less brain fog. On
Tuesday he went to bed according to schedule, but got up a few minutes later when the
phone rang. The call was from a friend and lasted half an hour. When the call ended, the
person's daughter had arrived home from school and therefore abandoned the idea of
rest for that day. On Wednesday he unplugged the phone before going to bed. There
was a call, but the answering machine went off. He felt a little guilty for not answering
the call, but the break refreshed him.

Thursday, he ran some errands in the afternoon and didn't try to take a nap. He rested on
Friday, but when he got up, he felt worse. She noticed that she was very worried about
something her husband had said to her in the morning before leaving for work. He told
him that he might be fired from his job. She felt anxious all day and her mind was
spinning during the break. The result was that the time she was lying down did not leave
her very rested.

The entries you put in the "Results" section of the goal form were:

Mon I felt better after

Marti
I stopped to answer the phone
n
Wedn
I ignored a call
esday
Frida
I felt worse afterwards: worried
y

In the end he asked himself what he had learned from his experience. He congratulated
himself for having almost met his goal. He rested three days for 15 minutes, and the
fourth a little. He concluded that his experience was enough to show him the value of
rest. He had more energy, at least after some of the breaks, thus gaining the feeling that
rest could offer the way to control his illness.

As he thought about the worry that had interfered with his rest on Friday, he
remembered hearing about relaxation techniques and wondered if he could practice
them while he rested. He thought it could help him rest his mind and body, thus offering
a way to reduce his worries. In the "Lessons" section of the goals form, he wrote:

Rest can be helpful. I want to try relaxation as part of rest.

Begin

Now is your turn. Think about a problem that worries you. Pick just one and make a
commitment to get started today. Then, think of several possible solutions, things that
can reduce or solve your problem. After reviewing them, you choose one to try next
week and write a goal that answers the four questions what, how much, when, and how
many times. It can be something you plan to do, like rest or sleep, or anything else in
your life - it doesn't matter what you think would help you right now. No matter what it
is, make the goal specific, like the examples above.

Once you have set your goal, you have to ask yourself how confident you are in being
able to complete it successfully. Rate your trust with a number between 0 (means you
don't trust) and 10 (total trust). If your confidence is less than 8, repeat your goal in less
ambitious terms. Once you have a goal and are confident of achieving it, you are ready
to start. You test your goal for a week, and then see the results. If you meet your goal,
you can congratulate yourself. If not, you have to ask yourself what lessons you have
learned from the experience.

My objective
That ____________________________________________
How much
__________________________________________
When _________________________________________
How often ____________________________________

Confidence level _______

(0 = no trust; 10 = complete trust)

Results
Day Comments

Lessons
I have learned_____________________________________
________________________________________________
7: Recordings and Worksheets
This chapter focuses on another useful tool for those who self-manage: writing. The
first section describes one way: making records with health diaries. Taking a few
minutes each day to fill out a health diary can help you discover links between events in
your life and your symptom level. The planning spreadsheets described in the second
part of the chapter offer you a way to translate your journal entries into concrete plans.
(See Chapter 13 for three more ways to use writing: with a journal, with a gratitude pad,
and with Thought Recordings to change the way you "talk to yourself.")

Have a Health Diary

Written records can be a valuable tool for your self-management program. A health
diary can help you in at least four ways. You can use logs to:

 Control symptoms
 Motivate yourself
 Check the reality
 Explain and document your illness

Control your symptoms

If you're like most people with CFS and fibromyalgia, your symptoms fluctuate, both
throughout the day and from day to day. When these fluctuations appear random, they
can contribute to a feeling of frustration and hopelessness. A health diary offers a way
to understand the swings in your symptoms. It is a tool to discover what makes your
illness worse and what helps you improve. This knowledge opens the way to controlling
your symptoms.

For example, records can help you how to beat. One person, after noticing that his
symptoms were directly proportional to his effort, used his diaries to divide activities
into categories of light, moderate, and hard, based on the energy each activity required
and the extent to which it increased his symptoms. He used this information to plan his
days, so he could alternate light activities with moderate and hard ones. He reported that
"now I can do more and my symptoms are less."

Other people report that journaling has helped them recognize that many different
factors contribute to their symptoms. One woman, for example, used the logs to
discover that the time of day greatly affected her mental activity. He discovered that if
he read in the morning, he would get fibro fog after 15 to 30 minutes. After covering the
registry for a week he found that his mental stamina was much better in the afternoon. If
he studied in the afternoons, he was able to read for two 30-minute sessions with a 10-
minute break in between and was able to memorize the information. Over time he
managed to increase his total study time to two hours per day. Recording the logs has
shown him that the schedule of doing things was crucially important. Diaries can also
reveal how symptoms are affected by factors such as emotions, stress, and social
activity.
Records can also show how the effects of activities can be delayed. One person reported
that some days he felt so tired in the late afternoon that he had to take a nap. Studying
his records, he found that these naps coincided with the days he had exercised. He was
surprised by this connection, since he had not experienced symptoms while exercising.
Experimenting with different levels of exercise he finally found one that didn't tire him
out too much.

Recordings can reveal the cumulative effects of our activities and show the importance
of watching periods longer than a day. Some people find that they are able to maintain a
consistent level of activity for several days, and feel tired only at the end of that period.
Keeping a record can help you discover what level of activities you are able to maintain.

You can also use your logs to understand patterns over even longer periods of time. One
person in our program, for example, used her journal to understand her flare-ups and
then eliminated them. Reviewing his records from a year during which he had spent a
total of almost two weeks in bed due to CFS flares, he discovered that most of his flares
were associated with additional illnesses, such as colds or the flu, or with travel. He
decided to combat the flare-ups triggered by the secondary illnesses by taking extra rest
after the symptoms of the secondary illness ended. To minimize travel-related setbacks,
he limited them to within a couple of hours' drive of his home with breaks in between.
Since this time he has not experienced setbacks serious enough to confine him to bed
for a day (his definition of an outbreak).

Motivate you

Records can also be an important source of motivation and inspiration. Seeing written
proof that the level of your activities affects your symptoms can provide encouragement
to follow the rhythm. Recording progress can provide hope. For CFS patient JoWynn
Johns, whose experience is described in detail in Chapter 10, both factors were
important in her learning to live within her energy envelope. After recognizing that both
mental exertion and emotional stress caused his symptoms, as well as his physical
activities, he concluded that he would need the records to remember the causes of his
symptoms. He wrote “ Color coding with colored markers allowed me to easily see how
I am doing throughout the month. This kind of visible feedback is stimulating and
motivates me."

Check the reality

Records can also function as a mirror, to check reality. One person in our program said:
"The diaries bring home the reality of my illness. Before having the diary I didn't realize
that most of the time my functionality was around 35%. This false perception of being
better than I really am led me to overdo myself, but now I am less ambitious."

Another person used a visual recording system to help keep track. He scored himself
every day and recorded his scores on a calendar with colorful dots. Green means a good
day. Yellow means care. Red means stop: intense symptoms, time to go to bed.

A third person reviews your records to see if you could accept more responsibility. "At
the end of each week I check my activity diary and write a short summary at the bottom
of the page, commenting on the good experiences, the symptoms I have had through no
fault of my own, and the symptoms I had that I could have controlled in some way. "

Explain your illness and document your disability

Finally you can use your recordings to talk to doctors and to document an
acknowledgment of disability. Health records can document your functional level and
show changes over time.

Health Diary Samples

There are many ways to record your life in writing. Below are two health journals to get
you started. You can use one, both or develop your own system.

Symptom diary

The Symptom Diary consists of a list of common symptoms in people with Chronic
Fatigue Syndrome and fibromyalgia. To use the journal, you have to write entries one or
more times a day, with one column for each group of entries. (
http://www.cfidsselfhelp.org/files/symptom_log.pdf )

You can use this journal to:

 Define your overall level of symptoms

 Determine which are your most important symptoms
 Document daily changes in symptoms
 Recognize interactions between symptoms
 Document changes in symptoms over time

The example at the end of the chapter shows a Symptom Diary completed over five
days. The scheme shows a set of symptoms consisting of five elements: fatigue, pain,
fog/memory problems, disturbed sleep, and depression. These symptoms were at a
moderate to severe level for at least part of each day. This person also had a headache
on two occasions.

The diary indicates that the patient's symptoms usually improved during the day and
were generally milder at night. The exceptions were Wednesday and Thursday, when it
was more active than usual in the afternoons. The effects of overactivity were delayed
and did not occur until the evening.

The person using this diary also noted some relationships between the symptoms. Their
major symptoms (fatigue, brain fog, and muscle pain) were lowest in the mornings after
they had a good night's sleep. He also saw a connection between depression and his
other symptoms. His depression was milder when his other symptoms were lighter in
the morning, and stronger when he experienced stronger symptoms.

Activity diary

The Activity Log ( http://www.cfidsselfhelp.org/files/activity_log.pdf ) helps you

associate your activities with the level of your symptoms. With the diary you will be
able to recognize connections between the causes (your activities) and the effects (your
symptoms). What you can track includes quantity and quality of sleep and rest, specific
activities (cooking, errands, TV, reading, socializing), exercise, emotions and stress.

With the diary you will be able to record the number of hours you have slept (enter the
day you finished sleeping), daytime rest, key activities and events of the day, symptoms
(rated from 1 to 10), comments and an overall score for the day on a scale of 1 to 5. On
this scale, 1 is a very bad day, 3 is an average day, and 5 is a very good day.

To give you an idea of how to use this form, there is a sample Activity Diary at the end
of the chapter. The patient who filled it out was interested in finding patterns in her
symptoms and associating these patterns with events in her life. Before starting the
registry, he noticed an improvement in his symptoms due to two changes he made. His
stamina increased after he started taking two daily preventive breaks of half an hour
each. She was also able to reduce her brain fog and be more productive at her part-time
job after changing her work schedule from the morning, when her symptoms are
typically worst, to the afternoon, the best time of day for her.

Even after making these changes his symptom level was higher than desired. This
motivated him to start recording to learn why. He decided to write entries in his diary
three times a day. He planned to write down the hours he had slept as soon as he got up
in the morning. He also hoped to score just before he left for work and at bedtime.

On Monday he received the average score (3). Throughout the morning he had mild
pain and fatigue, and a bit of brain fog. He experienced no symptoms in the afternoon,
his best time of day. Late in the afternoon he experienced moderate brain fog during
dinner at a noisy restaurant and had trouble falling asleep.

On Tuesday morning his symptom level was higher and the same thing happened in the
afternoon. For this reason he rated the day as below average. He wondered why he had
stronger symptoms than usual. On Tuesday there was no obvious cause for his crisis.
Their level of activities was similar to that of an average day. But Monday had been
different in several ways. Their level of activities was higher. Aside from the time she
spent at work, she shopped and cooked in the morning and went out in the afternoon.
Plus he had skipped his break, even after getting little sleep on Sunday night. His
experience was probably an example of how the effects of events can be delayed.
Keeping a record can help make delayed reactions more evident.

Since his symptoms were even more intense on Wednesday, he decided to rate the day
as well below average. Resting in the morning helped reduce his symptoms somewhat,
but he had to leave work early. He was probably feeling the cumulative effects of
several days' activity.

When he woke up on Thursday he felt a little better and spent much of the morning
resting before going to work. This rest, in combination with all the rest of the previous
day, resulted in an average overall symptomatic level. He noticed how the fibro fog
started after spending 45 minutes on the computer. This experience indicates that
exceeding limits in mental activity can cause symptoms.
On Friday morning he forgot to record his activities, but he rated the day as better than
usual because he had mild symptoms in the morning and none in the afternoon and
evening. On Saturday he dropped back below average after spending part of the
afternoon running errands and working in the yard for an hour. The combination
resulted in him being on his feet for a total of three hours, well over his one-hour limit.
She decided to go to the movies at night with a friend, even though she had moderate
symptoms.

On Sunday morning his symptoms were only slightly above average, but he was able to
eliminate them by resting for several hours. The rest of the day she was asymptomatic,
except for one hour in the evening when she noticed moderate fog after a telephone
conversation with her sister. His sister called to announce that she was pregnant. The
patient was excited by the news and then remembered that emotional events often
trigger brain fog, both good and bad.

Guides for registrations

If you are interested in using health diaries, it would be good to keep the following two
guides in mind.

Make sure your journal:

1. Be easy to use : If your diary is easy to use you will be more likely to fill it out. A
common rule of thumb is that it can only take a few minutes a day to fill out a journal.

2. Make sense to you : Use journals to help you answer questions that are important to
you, not because you think you should or to please other people. Whether you use an
existing form or develop your own system, you need to make sure the records fit your
situation.

You have to record every day and regularly free up time to review your diaries. You
should plan to set aside a little time, each week or month, to review what you have
written and look for patrons and connections. If possible, ask someone to help you
review them with you.

Planning Forms and Spreadsheets

The forms in this section can help you translate insights from records and other
exercises into concrete plans. With what you have learned, you create your
individualized guide to living better. This section shows you how to use four planning
forms. These are spreadsheets for your daily schedule, your weekly schedule, outbreaks,
and special events. (For printable versions of the journals and for worksheets in this
chapter, go to http://www.cfidsselfhelp.org/library/type/log_forms_worksheets .)

To organize your spreadsheets, try using an AZ binder with several dividers. Put labels
on the divisions to make it useful to you. You can have dividers for the four
spreadsheets described in this chapter, plus others for your journals and a list of your
medications. An alternative is to store your material in folders or organize it in some
other way. The important thing is that you develop a system that adapts to your
situation. You can use existing forms or create new ones.
daily program

The Daily Schedule Spreadsheet offers you a way to translate an understanding of your
abilities and limits into a daily routine of activities and rest. Adhering to the program
offers you a way to control your symptoms and stabilize your life a little. Before
starting a daily program, try to understand your limits. You can do this using the Rating
Scale from Chapter 1, the Activity Log from this chapter, or the Energy Envelope form
from Chapter 9. Any of these methods should give you a sense of how much activity
your body can tolerate right now.

Here's an example of how one person used the Daily Schedule spreadsheet. Jane, a
married woman in her fifties, contracted FM about 10 years ago. She lives with her
husband in California. His two adult daughters live in the same city. It was scored
between 30 and 35, about average for people in our program. Given her self-score, she
thought she could be active for about three hours a day and could leave the house most
days of the week. He wanted to work on a detailed outline, but decided to start with just
a few routines. His initial priorities were getting sleep and eating well and exercising.

Since her top priority was getting a good night's sleep, she started writing down her
bedtime routine. (See sidebar) Knowing that she has trouble falling asleep if she's active
in the hour before she goes to bed, the first thing she specified was her "taper-down"
routine. It also included items that reflected other things she knew about herself. Taking
a bath helps you relax. You fall asleep faster if you spend a few minutes at night making
a "To Do" list for the next day. Having a list reduces your tendency to ruminate about
the future. Since his fibro fog is the strongest in the morning, he prepares his clothes the
day before. He included all of these things in his bedtime routine.

Bedtime routine

Reduce: No TV, computer or phone calls after 9

Take a shower
Make a “To Do” list for tomorrow
Prepare clothes for tomorrow
Take nighttime pills
In bed at 10

She decided that her morning and afternoon routines would focus on eating two healthy
meals, stretching, and taking two preventative breaks. Since the afternoon is when he
feels best, he schedules his daily outing for that time. (See the Weekly Schedule on the
next page for details.) The only thing required is to prepare dinner for her husband and
herself. (He makes his own breakfast and buys food at work.) What he put in his
program were not the only things he did throughout the day. These were more of the
things he wanted to focus on when starting out with the spreadsheet. If I managed to
make the first group (see box below), I would add more items.

Morning routines
 Have breakfast
Take morning medicine
Shower and get dressed
Evaluate and review the "To Do" list
Stretches
Rest for 20 minutes

Midday and afternoon routines

Eat
Stretches
Activity of the day (see Weekly Schedule)
Computer for 20 minutes
Rest for 20 minutes

Late afternoon routines

Prepare dinner and dine

Weekly Scheme

Since not all days are the same, it is also helpful to have a weekly schedule. When Jane
filled out her spreadsheet below, she thought she could do more activity each day
without intensifying her symptoms. Since the afternoon is his best time of day, he
scheduled most of his activities for that time. He knew that if something unexpected
happened, he would have to cancel one of the items on his agenda. Since exercise is
important to her, she planned to go to the gym twice a week for her water exercises. He
set aside an afternoon for grocery shopping and other errands. Two other events were
weekly cooking and time for laundry and house cleaning. He finally scheduled two
afternoons a week for dates and socializing. His only late afternoon event was on
Sundays when his daughters came to dinner.

My Weekly Scheme
SUN MON Sea WED THU FRI SAT
Tomorrow

Late
Gym
Kitchen Quotes Gym Quotes Wash Shopping and
Cleaning Errands
Late afternoon

Time for
 Family

Jane soon concluded that her weekly schedule was unrealistic. He discovered that if he
tried to do something every day he had to rest at least one afternoon a week and
sometimes two. This meant I couldn't schedule an activity for each day. The maximum
would be five or six days a week. She also realized that she was not able to prepare
dinner and entertain her daughters on Sunday nights. His body counted this as two
events, which was over its limit of one a day.

My Weekly Scheme
SUN MON Sea WED THU FRI SAT
Tomorrow

Late

Gym Appointments Gym Quotes Rest Cook for the week

or rest
Late afternoon

Time for
Family

Her experience led her to conclude that her actual score was probably between 25 and
30 on the rating scale, and not the 30 to 35 she previously thought. After thinking more
about his limits and talking to his family, he made a revised program. (See box below)
She moved her big weekly cooking session from Sunday to Saturday. At her request,
her husband agreed to do the weekly shopping. He and the daughters agreed to take
turns preparing the family dinner on Sundays. Jane decided to keep Friday afternoon
free to rest and chose to spread out the laundry and cleaning the house throughout the
week instead of spending it on Friday afternoons. She recognized that this experiment
might not work and decided that her next step would be to ask her husband for help with
household chores or hiring someone.

Sprout Spreadsheets

Periods of intense symptoms, often called relapses, setbacks, or flares, are a common
and often demoralizing experience for people with CFS and fibromyalgia. Chapter 11
discusses ways to limit the severity of outbreaks and offers ideas for their prevention.
Use the following forms to apply the general principles of relapse to your individual
situation.

Flare-up triggers : Although flare-ups are sometimes due to the ups and downs of your
illness, other setbacks are caused by factors you can more or less control. These factors
can be actions of yours or events that happen to you. In any case, there are things that
consistently intensify your symptoms. Completing the Outbreak Triggers form provides
you with a list of your vulnerabilities. The example offered as a starting point consists
of items that are often mentioned by people in our groups.

Outbreak Triggers

Doing too much (above energy capacity)

Exercising too much
Do more than one thing at a time (multitasking)
Sleep bad
Holding the same position for too long
Travel
Additional diseases
Economic problems
Stressful relationships (private people)
Worry about the future
Food or chemical allergies
Lights or noises (sensory overload)
Time with other people
Family responsibilities

Flare-up warning signs : The warning signs of a flare-up are sent by your body to
indicate that you are headed for a relapse. If you respond with corrective actions (see
next section), you may be able to avoid the entire outbreak, or at least reduce its
severity. But it is easy to miss or ignore the warning signs. A list of them helps you
reconsider so that you react differently when the downhill starts. By completing the
form you express your commitment to pay attention to, rather than ignore, signs of
impending problems. The example below contains several signs that are often listed by
people in our program.

Outbreak warning signs

Suddenly feeling more tired than usual

Feeling weak or dizzy
Extra pain
Rigidity
More confusing than usual
Feel stressed
Moody
Sleepy
Anxious
Eat junk food

Respond to warning signs : Since it's easy to ignore signs of trouble, it can help to
have a plan so you don't have to wonder what to do when these signs appear. Having
such a plan can help you respect your body's signals, instead of ignoring them, and be
receptive to your needs. Here is a list of the possibilities.
 Responses to warning signs

Stop: switch to a task with a lower requirement

Reduce your level of activities
Simplify: Don't multitask
Lie down (rest)
Get help with cooking, cleaning and washing
Stretches
Go to bed earlier
Practice relaxation or take a bath
Avoid caffeine, sugar, junk food and alcohol
Limit sensory input
No TV, radio or newspapers (media fast)
Limit time spent with other people

Prevent Outbreaks : The last spreadsheet focuses on preventing outbreaks and

reducing their frequency. Answer the question: What do I have to do to avoid relapses?
The following list contains ideas used by people in our program.

How to avoid outbreaks

Follow my daily and weekly plans

Go to bed at 10
Keep my house tidy and clean (do not clutter)
Stay within my activity limits
Limit phone calls to 20 minutes
Limit time on the computer to 30 minutes per
session
Limit repetitive movements
Limit driving
Limit travel to "safe" distances from home
Rest regularly every day
Stretch regularly
Exercise regularly
Get support from family & other patients
Disciplined taking pain and sleeping medications
Only eat "safe" foods
Ask others for help
Avoid certain people
Avoid noisy places (sensory overload)
Limit TV and other media
Schedule enjoyable activities
Practice daily relaxation and stress reduction
Special Events Spreadsheet

Special events, such as family vacations or party celebrations, present a special

challenge. Since they are non-routine events, they require more energy than you usually
expend. For this reason they can take you out of your energy envelope and lead to
stronger symptoms than usual. At the same time, you may feel like being more active
than usual. This is why you face a double danger. At a time when your energy envelope
is smaller than usual, you would like to be more active than usual. How can you balance
your desire to enjoy the special event with respect for your body's needs?

One way is to plan it. For some time before the event you determine what you will do to
avoid or minimize intense symptoms. Decide with whom you will share your plans and
who you want to ask for cooperation.

One planning technique is the Special Events Spreadsheet that helps you plan how to
spend your time before, during and after the event. The example below shows how the
spreadsheet could be populated for an output. There are more ideas about successfully
managing special events in the section titled "Vacation, Outings, and Other Special
Events" in the pacing chapter.

Special Events Spreadsheet

Event: Family vacation

Actions before:
Double normal daily rest for one week before
departure.
No special events (nights out) for a week before the
holidays.
Decide the limits of activities during the holidays
(e.g. 4 hours per day).
Discuss boundaries with family.

Actions during:
10-15 minutes of rest every two hours while
driving.
Double normal daily rest; Rest more if symptoms
are strong.
Maximum of 4 hours of activity per day.

Actions after:
Double normal daily rest for a week after returning
home.
No special events for a week.
References

CFIDS and Fibromyalgia Self-Help website: For printable versions of the logs and
spreadsheets in this chapter, go to
http://www.cfidsselfhelp.org/library/type/log_forms_worksheets

Copeland, Mary Ellen. Winning Against Relapse . Oakland: New Harbinger, 1999.

Starlanyl, Devin and Mary Ellen Copeland. Fibromyalgia & Chronic Myofascial Pain:
A Survival Manual . Oakland: New Harbinger, 2001. 2nd ed. (See Chapter 16: Wellness
Recovery Action Planning.)

FlyLady website: www.flylady.com . (see the section titled "Control Journal.")

8: Treatment options
Having a long-term health problem like CFS or fibromyalgia means learning to live
with persistent symptoms. The absence of a curative treatment, however, does not mean
that there are no treatments. On the contrary, there are many ways to alleviate the
symptoms of both diseases. Although treatments do not cure CFS or FM, they can
reduce the effects of symptoms and help people who are destined to recover move
forward.

This chapter discusses the most important treatment options for four of the most
common symptoms of CFS and fibromyalgia: fatigue, pain, poor sleep, and cognitive
problems. The approach to managing the symptoms you find here is based on three
principles.

 Focus on feeling better : Since there is no cure to date for either CFS or
fibromyalgia, treatment focuses on finding things that can help you feel better
and have more control. The strategies described in this chapter and in the book
can help reduce pain and discomfort, bring more stability, and decrease
psychological suffering.
 Multiple strategies : Since most people with CFS and fibromyalgia have more
than one symptom, and a symptom often has more than one cause, it is helpful to
employ multiple management strategies. These strategies often include both
medications and self-management approaches.
 Experimentation : Because patients are different and there is no standard
treatment for CFS or fibromyalgia, symptom control is often achieved through
trial and error. Some approaches work better at some times than others, or work
better for some people than others. If one strategy doesn't work for you at a
given time, try another.

Medical treatments for CFS and fibromyalgia can be helpful for most patients and are
discussed in this chapter. But using medications for CFS and FM can be frustrating
because there is no standard treatment for either illness—that is, there is no predictably
effective medication. If you want to use medication to treat your illness, a sensible
approach is to find a caring doctor, willing to work with you in a process of trial and
error to find the medication that helps your individual situation.
Your success in controlling symptoms, however, will likely depend more on your
efforts and willingness to adapt than on anything a doctor does for you. Making changes
to your daily habits has several advantages over medication. Strategies such as pacing
and stress management are cheap, safe, and highly likely to help. The majority of
patients we have met who have shown marked improvement or have recovered have
relied entirely or exclusively on self-management. In the words of CFS/FM physician
Dr. Charles Lapp, "To treat CFS or FM there is no medication, potion, supplement, herb
or diet that can even compete with lifestyle change."

Fight fatigue

Fatigue is the core symptom of CFS and is a significant problem for most people with
fibromyalgia. The word fatigue can be a misleading word for the physical and mental
exhaustion that often pervades patients' lives, causing them to be listless and unable to
complete normal activities.

Fatigue can have many causes. One is the disease itself, which uses energy in the
attempt to heal, thus leaving patients with less energy for their daily activities. The
single and most important key is perhaps to manage fatigue and other symptoms,
adjusting your level of activities to fit within the limits imposed by CFS or FM. We call
this "living within energy limits" or pacing. Instead of fighting the body with repeated
push and crash cycles, you try to understand your body's new requirements and live
within them.

Living successfully with CFS or fibromyalgia requires many practical adaptations:

developing, through trial and error, a detailed understanding of your new limits, and
then gradually adjusting your daily habits and routines to respect these limits. Each
person has different limits, depending mainly on the severity of their illness. Dr. Paul
Cheney summarizes this approach well when he says "to improve, it is key to properly
set limits and always be individualized ." The next two chapters contain both ways to
define your energy envelope and practical strategies for living within it.

Another part of the challenge of an adjustment is psychological: accept that your life has
changed and learn to see your life in a new way. This acceptance is not resignation, but
rather recognition of the need to lead a different kind of life, one that honors the limits
imposed by the illness. This recognition requires that you develop a new relationship
with your body. In the words of one person in our program, "Getting well requires you
to shift, instead of trying to ignore your body's signals, to paying attention when your
body tells you to stop or slow down." This process of accepting limits and learning to
live another type of life usually takes several years. There are ideas about accepting
losses in Chapter 16.

Aside from your illness, fatigue can have many other causes. Two of them are sleeping
poorly and having pain. Non-restorative sleep makes you as tired in the morning as you
are at bedtime. Pain is inherently tiring and also tends to produce muscle tension which,
in turn, creates fatigue. Physical discomfort can also make it difficult to fall asleep or
sleep comfortably. Treating sleep and pain can help you manage your fatigue. Strategies
are described in the next two sections.
The relationship between fatigue on one side, and pain and sleep on the other, also
works in the other direction. Feeling tired increases the experience of pain. Fatigue can
lead to too much daytime rest or produce the "Tired but Fast" feeling that makes it
difficult to sleep well. This is why, just as treating poor sleep and pain can reduce
fatigue, treating fatigue can have a positive impact on sleep and pain. The three
symptoms interact, affecting each other. Improvement in one symptom can have a
positive effect on the other two. The symptom that is usually attacked is sleep.

Other causes of fatigue include:

 Too much activity : Overactivity intensifies symptoms and often leads to a

cycle of "push and crash", which means doing too much (push) and therefore
having an outbreak (crash).
 Stress and emotions : Stress leads to fatigue when energy is spent on worries
and lost in muscle tension. Fatigue is also a symptom of depression.
 Lack of activity : A decreased level of activities produces a lack of physical
condition, which makes the activity more tiring.
 Poor nutrition : Poor quality or insufficient diet, digestive problems and food
allergies are factors that contribute to fatigue.
 Medication side effects : Many medications create fatigue.

If your problem is that you are doing too much activity, the most effective response is
pacing, as described above. Pacing begins by defining your limits. You can do this
generally by scoring yourself on the CFS/FM Rating Scale. Your self-assessment
suggests that you have a normal daily level of activities. If you want to understand your
limits in detail, for example how much exercise you can do or how much time you can
spend with other people, you can fill out the Energy Envelope form in the next chapter.
Once you understand your limits, you can learn to live with them with matching
strategies, such as setting priorities, taking breaks to rest, short periods of activities,
living according to a program, and managing special events, such as vacations and
excursions. More on pacing in Chapter 10. Also look at the daily and weekly
spreadsheets from the previous chapter.

In Chapter 13 there are some strategies to relax and others to manage stress. Because
stress is so persistent in chronic illness and we know that it intensifies symptoms, such
as pain and poor sleep, many patients use a few strategies to combat it. As with other
self-management strategies, stress management techniques affect multiple symptoms.

Strong emotions are part of chronic illness, a response to the disruption, loss and
uncertainty that comes with it. Emotions can be treated with a combination of self-
management strategies, professional help, and medications. Chapter 14 describes how to
manage depression, anxiety, and anger. Chapter 16 offers resources to help you beyond
grief.

If being sick reduces your level of activities and leads to a lack of physical fitness, you
may be able to start a spiral in the other direction with exercise. Exercises improve
physical fitness, thereby reducing fatigue caused by inactivity. It also helps combat
pain, reduce stress and improve mood. Exercise is usually recommended for
fibromyalgia patients and may also be helpful for CFS. More in Chapter 12.
Patients with CFS and fibromyalgia often experience several different types of problems
eating well. First, because of energy limitations, lack of appetite, or severity of
symptoms, some people may not be able to spend enough time preparing and eating
balanced meals. Eating well can provide energy and improve the immune system.
Second, most patients experience alcohol intolerance and many are sensitive to caffeine
and/or sweeteners. Reducing or eliminating these substances can reduce symptoms and
mood swings and also improve sleep. Finally, about a third of CFS patients, and a
comparable proportion of fibromyalgia patients, experience sensitivities to various
foods or have difficulty absorbing nutrients. The most effective strategy for managing
food allergies is an elimination diet in which foods are removed from the diet and then
reintroduced one by one. More ideas about good nutrition in Chapter 12.

Many medications, including some antidepressants and prescription pain medications,

create fatigue as a side effect. To combat this source of fatigue, talk to your doctor about
fatigue when reviewing medications. Changing medications or lowering the dose may
help.

Strategies for pain

Pain is usually the central symptom in fibromyalgia and is often also a problem for
patients with CFS. As fatigue and pain can have various causes and is best managed
with various strategies, often involving not only medications, but also self-management
techniques.

Many CFS and fibromyalgia patients seek modest pain relief with medications, and this
is achieved with over-the-counter products, such as aspirin and other over-the-counter
pain relievers. Others find relief with prescription medications such as Ultram
(Tramadol) and, in some cases, narcotics. Prescription medications to improve sleep
may also have a beneficial effect on pain. Antidepressants such as Elavil
(Amitriptyline), Prozac and Paxil are often tried. Some patients suffer from neuropathic
or nerve pain, burning sensations or electric shocks, usually felt in the hands and feet.
This type of pain is often treated with anti-epileptics such as Neurontin (Gabapentin).

Successful treatment of CFS and fibromyalgia is often very individualized, depending

on factors such as the person's symptom pattern and their response to different
medications. You usually have to experiment to find medications that help. It is difficult
to predict which treatment may be successful. Sometimes a medication is effective for a
while and then loses its effectiveness. Typically patients are started with doses that are a
small fraction of the normal dosage level.

As with fatigue, pain is a reflection of the limits imposed by the disease and for this
reason it is useful to pace. The key is to know your activity limits and stay within them
with techniques such as short bursts of activity, switching tasks, and rest breaks. Taking
regular, scheduled breaks can be particularly helpful. Resting this way is one of the
most popular strategies applied by people in our program. People who use planned rest
often take one or two a day, lasting between 10 minutes to half an hour. No matter the
duration, the secret is to rest according to a schedule, no matter how you feel, and not
wait until the symptoms intensify. There is a detailed discussion of pacing in Chapter
10.
With pain, as with fatigue, it is often helpful to explore the interactions between the
three most important symptoms. For most people, fatigue makes the perception of pain
stronger. When we are tired we notice the pain more intensely and for this reason,
reducing fatigue reduces the pain. Similarly, poor sleep intensifies pain and therefore
improving sleep can help control pain.

The pain may also have other causes, including the following:

 Too much activity : Ignoring the body's signals to stop, we often exceed our
limits. Both being too active and not balancing activity with rest can make pain
worse.
 Stress and emotions : Stress increases our perception of pain and also often
causes muscle tension which causes pain. Muscle tension is also caused by
emotions such as worry, frustration and depression. Negative emotions also
often lead to preoccupation with symptoms which increases the experience of
pain.
 Inactivity : Muscles deteriorate from inactivity. Weak muscles contribute to
pain. Exercise can help. See Chapter 12.
 Body mechanics : Poor posture or being in one position for too long can make
the pain more intense.
 Environmental factors : Feeling hot or cold, or changes in barometric pressure
can deepen the pain.

Effective strategies for multiple symptoms

Since the causes of the four symptoms discussed in this chapter include overactivity,
stress, emotions, and inactivity, using strategies such as pacing, stress management,
emotion management, and exercise can have a multiplied effect as they address multiple
symptoms. . Below I will discuss how these strategies affect pain.

For overactivity as a cause of pain, the answer is pacing, as described a few paragraphs
above. For pain caused by stress, the answer is relaxation and other stress management
techniques. Since stress increases the perception of pain and causes muscle tension -
another source of pain - relaxation reduces pain because it reduces both stress and
muscle tension.

Worries, frustration, and other emotions create muscle tension. There are relaxation
procedures to soften pain by reducing stress that can also help reduce the effects of
negative emotions. Our subjective experience is also increased by emotions. Fear
intensifies pain and this is why anxiety management can help control pain. More on this
in Chapter 14.

Another group of strategies to control pain with emotion management has to do with
changes in your thoughts. An increase in symptoms can trigger negative thoughts such
as "I'm not getting anything done," "I'll never get better," or "This is hopeless."
Thoughts in this style can make you feel anxious, sad, angry and hopeless, thus
intensifying the pain and triggering more negative thoughts. The section in Chapter 13
titled “Changing Your Thinking” describes how to recognize and gradually change
habitual negative thoughts.
Specific remedies for pain

In addition to medication and self-management strategies that reduce several symptoms

at once, there are other non-medical measures that can be applied specifically for pain.
We'll look at three: body mechanics, physical treatments (such as heat, cold, and
massage), and guaifenesin.

If we pay attention to body mechanics we can reduce pain. Notice how you position
your body and how you move it. Try different positions, both standing and sitting, to
find out which ones minimize your pain. Also see how long you are able to maintain a
posture without creating problems for yourself. Many fibromyalgia patients notice that
standing in the same position for about 20 minutes creates stiffness and intensifies pain.
The solution is to move regularly. Check your body frequently for muscle tension.
Areas that often become tense include the jaw, neck, and shoulders. It may be helpful to
move, massage, or tell yourself to relax.

When working in the kitchen, try to put one foot on a stool to reduce stress on your
back. If you are cutting or doing other tasks that involve repetitive movements that
cause pain, experiment to find out how long you can work without creating pain and
how long you have to pause before resuming work. If standing causes you problems, try
sitting in a chair.

Physical treatments can help too. Heat and cold can be used to temporarily relieve pain.
Heat is best used to reduce pain that results from muscle tension and inactivity. Heat
increases blood flow and thus produces some relaxation, reducing pain and stiffness.
For localized pain you can use heat bags. For overall relief people often use hot baths,
soaking in a hot tub, or lying down with an electric blanket.

Cold treatments decrease inflammation by reducing blood flow to an area. They can
also numb the areas that are sending pain signals. You can use gel, ice or frozen
vegetable bags. In both heat and cold, you should not use the treatment for more than 15
or 20 minutes at a time.

Massaging painful areas can also provide temporary pain relief. Like heat, massage
increases blood flow and can also relieve spasms. You can consider three different
forms of massage: self-massage with your hands, massage with a manual contraption,
and professional massage. You ask the masseuse to be careful and frequently check
your sensitivity to pain.

Another popular alternative treatment for fibromyalgia is guaifenesin, the most

important ingredient in many cough syrups. The idea of using it for fibromyalgia was
developed by Dr. Paul St. Armand of UCLA, who believes the product helps correct a
metabolic defect in phosphate excretion. Although taking guaifenesin has few side
effects for most people, many people report that their symptoms initially increase.
Likewise, for those patients it has helped, improvement does not usually occur for
several months. The only study that investigated guaifenesin showed no advantage over
placebo, although fans have complained about the study design. Like most CFS and
fibromyalgia treatments, guaifenesin is not a total cure and does not help everyone who
has tried it, but it appears to be effective for some patients. If you are interested, consult
with your doctor.
Sleep solutions

Poor sleep is one of the most common problems for fibromyalgia patients and is also
very prevalent among people with CFS. With both diseases, poor sleep is an important
source of symptomatic intensification. The patient may spend the night in bed, but wake
up as tired as when he went to bed. There are also other common problems with sleep,
such as difficulty falling asleep, waking up in the middle of the night or early morning,
or sleeping too much.

The most widely believed cause of sleep problems, especially for fibromyalgia patients,
is that it is an abnormal pattern of brain waves. The human brain is active during sleep,
moving between several different types of sleep, each with its characteristic brain wave.
The deepest and most restorative type of sleep is called delta sleep. Patients with CFS
and fibromyalgia often get less delta sleep than they need, and because of this they don't
feel fresh when they get up in the morning. When healthy volunteers in an experiment
were deprived of delta sleep, they developed fibromyalgia symptoms within a few days.

Treating sleep is especially complex since there is no single medication that has been
shown to be helpful in solving sleep problems for people with CFS and fibromyalgia.
Many patients also develop a tolerance to medications, so that a medication over time
becomes less effective. For these two reasons, sleep problems can benefit from a
flexible and experimental approach with several strategies.

Medications commonly used to treat sleep problems include over-the-counter products

such as melatonin and valerian; antihistamines such as Benadril; clonazepam
(Klonopin); tricyclic antidepressants such as amitriptyline (Elavil); benzodiazepines,
such as Halcion; and the hypnotic Ambien. Many times a combination of two
medications is prescribed, one to initiate sleep and another to maintain it. If you think
medications can improve your sleep, it makes sense to see a doctor willing to work with
you to find what helps in your unique situation.

Another way to improve sleep is to look at the interactions between pain, fatigue, and
sleep to determine how to interrupt the vicious cycle of these three symptoms
intensifying each other to begin an upward spiral. To figure out the interaction between
fatigue and sleep, you have to ask yourself if your daytime naps can prevent you from
falling asleep. Likewise, if the level of your activities makes you feel "rushed," pacing
strategies can help. Pain can make it difficult for you to sleep well, which is why it may
be helpful to reduce pain before going to bed; You could try a pain reliever and get into
a hot bath or jacuzzi.

Poor sleep can also have other causes, including the following:

 Overactivity : Activity can create the feeling of restlessness, sometimes called

the "tired but fast" feeling. Pacing can be an antidote. Try to keep your level of
activities within the limits imposed by your illness, and be quiet for a while
before going to bed to slow down. This way you can prevent your sleep from
being affected by a nervous state of hyperalertness.
 Stress and worries : Stress often leads to muscle tension, making it difficult to
fall asleep. Worrying about problems can make it harder to fall asleep. There are
relaxation methods that help you release tense muscles and thus can facilitate a
 good rest. Try relaxation procedures such as those described in the chapter on
stress management or get into a hot bath or jacuzzi before bed. If you have
trouble falling asleep because you are worried about problems and lie awake in
bed with a whirlwind of thoughts in your head, try setting aside "worry time"
each night before going to bed. Set aside half an hour to write down all your
worries and what to do about them. If some come up when you're trying to sleep,
you tell yourself, "I'm done with this, I don't have to worry because I know what
to do with it."
 Sleep habits and environment : Sleep can be disturbed by factors such as
irregular hours, a noisy environment, an uncomfortable bed, or a noisy sleeping
partner. For suggestions on improving sleep habits and your sleeping
environment, see the next section.
 Food, alcohol and tobacco : Consuming too much caffeine, drinking alcohol
and smoking can complicate a good rest. You should avoid products that contain
caffeine, such as coffee, tea, soft drinks and chocolate, several times before
bedtime. Alcohol should be avoided before going to bed because it can create
restless and uneven sleep. The nicotine in tobacco is a stimulant and this is why
smoking is a barrier against falling asleep.
 Medications : Some sleep medications that are effective when used occasionally
can cause you to sleep poorly if used frequently. Also, some medications cause
side effects such as dizziness in the morning. There are medications taken for
other problems that can interfere with sleep because they contain substances
such as antihistamines or caffeine.

Improve sleeping habits and environment

Perhaps you can improve sleep if you change your habits or the environment where you
sleep.

1. Have a comfortable environment : try to have an environment that is conducive to

good sleep, such as a good mattress and controlling light, noise and temperature. (Note:
Noise includes snoring of the person sleeping with you.)

2. Establish a routine : Go through the same routine every night and go to bed at the
same time. Prepare for sleep by gradually reducing the level of your activities several
hours before bedtime and with the same "bedtime" rituals that you do every night and at
the same time. Doing things like brushing your teeth or reading something light each
night before you retire can help you slow down and get psychologically ready for sleep.

3. Get up at the same time : Set the alarm clock to get up at the same time every day.
This can help you gradually adjust back to more normal hours. It is not common to have
to go to bed earlier to compensate for the time asleep because your body will adjust on
its own.

4 . Limit daytime naps : Daytime naps often interfere with a good night's sleep. If you
sleep during the day and find that you have trouble falling asleep at night, or that you
sleep worse than usual when you nap, you might consider sleeping only at night. (On
the other hand, if naps don't disrupt your nighttime sleep, you may need to get more
rest.)
5. Use relaxation or distraction to fall asleep : You may find it easier to fall asleep if
you listen to calm music or if you distract yourself in another way such as counting or
noticing your breaths. Relaxation techniques can help you fall asleep.

Other sleep problems

Some patients have, in addition to insufficient delta sleep, one or more additional
problems falling asleep. Two of the most common are restless legs syndrome and sleep
apnea. The first involves "nervous limbs," strong, unpleasant sensations in the muscles
of the legs that create the urge to move them. The problem is often worse at night. Self-
management techniques that can help include reducing caffeine and other stimulants,
establishing a regular sleeping pattern, doing leg exercises, distracting yourself with
some activity, taking hot or cold baths or showers, and taking supplements to counteract
deficiency. iron, folate and magnesium. There are several categories of medications that
can help as well, including sedatives, medications that affect dopamine, pain relievers,
and anticonvulsants. Check with your doctor if you think you may have this condition.

Apnea, which means no breathing, occurs when a person's airways become blocked
during sleep. An episode can last from a few seconds to a few minutes. Then the person
wakes up, takes a breath, and falls asleep again. This can happen many times a night. A
common remedy is to use a CPAP (continuous positive airway pressure) machine that
keeps the airway open. The patient wears a mask through which a compressor releases a
continuous stream of air to keep the airway open. There are also other treatments for
this pathology. If you think you have this problem, consult a sleep specialist.

lift the fog

Most CFS patients and many people with fibromyalgia experience cognitive difficulties,
often called "brain fog" or "fibrofog." These problems include confusion, difficulty
concentrating, word-finding problems, and lapses in short-term memory. Like the
symptoms discussed above, brain fog can have several causes. Use the strategies for the
causes that apply to you.

1. Overexertion : Cognitive difficulties can be caused by overactivity and can be

reduced if you live within the limits imposed by your illness. As one person in our
program said, "brain fog helps me recognize when I step outside my envelope. Even
though I don't feel tired, the fact that I am not able to think clearly tells me that I have
passed my limit. My response is the same as for the other symptoms: rest and rhythm."
You may be able to limit the duration of brain fog by responding quickly. For some
patients, a 10 or 15 minute break is enough for it to stop.

2. Poor sleep : Problems associated with fog are seen in sleep-deprived people. Getting
restorative sleep can help limit cognitive problems.

3. Stress and emotions : Stressful situations and strong emotions can trigger or
intensify brain fog. This effect occurs whether the emotion is positive or negative. If an
experience triggers adrenaline, it is likely to cause cognitive problems. You can reduce
brain fog by avoiding stressful situations, learning how to relax in response to stress,
and training yourself to silence adrenaline production.
4. Multitasking – Many patients experience fog when trying to do more than one thing
at a time, such as reading while watching TV or talking on the phone while preparing
food. The solution: do only one thing at a time.

5. Overstimulation : Patients are often sensitive to noise, lights or sensory input from
several sources at the same time, for example a TV in the background while talking on
the phone. Solution: go to a quiet place and avoid distractions.

6. Hunger : Fog can be triggered by lack of food. Solution: When you notice cognitive
difficulties, remember when you last ate and think about whether it would help you if
you ate something right now.

7. Side effects of medication : Confusion can be a side effect of some medications. If

you think this could be your case, check with your doctor. Also talk to him/her about
using medications to increase attention and concentration.

Other Ways to Minimize Brain Fog

Consider the following additional strategies that can also help limit brain fog.

1. Choose your best moment : Most of us have best and worst moments throughout the
day. Try to do your most important tasks and those that require concentration and
mental clarity during the hours when you are most alert. The best time of day varies
from person to person. For many CFS patients it is between mid-afternoon and early
evening. Many fibromyalgia patients feel better in the morning. The most important
thing is that you find out your best time.

2. Postpone, change tasks, or cancel activities : If you're not thinking clearly,

postpone work that challenges you mentally, switch to a simpler task, or take a break.
As one student said, "When I'm too tired and foggy to think, I put things off until the
next day and replace them with extra rest." You can also use the presence of brain fog
as a cue to cut back: "When I'm really foggy, it's a sign I need to cancel some
activities."

3. Use lists and other reminders : Write down your tasks for the day on a "To Do" list.
Organize your home and possessions to give you ready-to-use reminders. For example,
you could keep your medicines where you dress, so you see them and remember to take
them when you get up in the morning and at night when you get ready to go to bed. Use
Post-it notes in visible places to train your memory.

4. Use routine : Reduce fog by living a predictable life with routines: do the same
things in the same way every day. For example, as soon as you get home, always put
your keys in your bag. If your fog is worse in the morning, prepare your clothes the day
before.

5. Organize and avoid hoarding : For people sensitive to sensory overload (over-
stimulation), organizing the house and avoiding piles can be a way to control brain fog.
One student reported that she even simplified her clothing "I only have two colors of
socks, one type of shoe (I have one pair for downtown and one for everyday), and some
sandals and some dress shoes. I only have two colored pants and about 6 tops. "This
way I hardly have to make decisions."

6. Seeing things differently : Brain fog can be scary and embarrassing. Many students
have told us that, when they lack mental clarity, they have learned to speak to
themselves and others in a calming or light-hearted manner. One said that when he
makes a mental slip, he tells people, "I'm practicing for when I have Alzheimer's."

7. Do something physical : Physical activity is relaxing. It can increase energy and

clear your mind. The activity includes exercise and other things like laughing, singing
and breathing. One patient said "The more I try to control my fog, the worse it gets...
For me, the best thing to relieve brain fog is to laugh - loud and strong - a good laugh.
Deep breathing also helps me. Singing releases the tension caused by brain fog."

8. Plan your response : Try to plan your response in advance to deal with the fact that
brain fog is confusing. Develop rules to guide you when you feel lost, so that you have
standard, habitual responses to fall back on. For example, you might decide that when
you're foggy, you lie down or switch to a simpler task.

Multiple strategies

Like the other symptoms discussed in this chapter, the best way to address brain fog is
with a combination of strategies. When we ask people in our groups to describe what
they do to combat cognitive problems, they give us lists that may contain ten or more
items. Here are two examples.

My brain fog is worse when I'm exhausted, so I try to stay within my energy limit. The
fog spells have decreased a lot since I learned this. When I was sicker, my home office
and paperwork had deteriorated into chaos, and these past few months I've managed to
get myself back together. Now I don't lose things and I can find what I need without
stress. This order helps prevent my panic and fog. And when I'm too tired and foggy to
think, I put things off until the next day and get extra rest instead. If I'm on top of things
at home and at work, I rarely have to do anything right away. I also talk to myself and
say "This too shall pass" or "Nothing catastrophic will happen if I don't do this right
now." This keeps me from panicking and melting down. In the morning, before I get
really tired, is when I am mentally strongest, which is why I schedule all my activities
that are hard on the brain in the morning and leave simple tasks for the afternoons. I also
eat a few proteins every few hours, and this makes a huge difference in my brain power.

I think the way I organize my life has helped me reduce the amount of brain fog I
experience and also its effects. I try to lead a routine and predictable life. I also keep my
physical environment tidy, so I'm never overstimulated by clutter and I know where
things are. I have determined that mid-afternoon and early evening are my best times of
day for thinking and so I use that time of day to my advantage. Because brain fog is so
disorienting and scary, I talk to myself to help myself. I tell myself things like 'You
don't have to balance your checkbook right now; Why not do something now that you
know you're capable of doing and come back later with the checkbook?'
References

Arthritis Foundation. The Arthritis Foundation's Guide to Good Living with

Fibromyalgia . Arthritis Foundation: Atlanta , 2001.

Caudill, Margaret. Manage Pain Before It Manages You . New York: Guilford Press,
1995.

Hauri, Peter and Shirley Linde. No More Sleepless Nights . New York: Wiley, 1991.

Verrillo, Erica and Lauren Gellman. Chronic Fatigue Syndrome: A Treatment Guide .
New York: St. Martin's Press, 1998.

9: Energy limits
As I mentioned in the last chapter, CFS and fibromyalgia impose limits. People with
CFS and fibromyalgia have less energy than before they became ill, and also other
limits created by the symptoms such as pain and poor sleep. Limitations range from
relatively minor alterations in life to severe restrictions that confine people to their
home. Living successfully with these diseases requires you to understand your body's
new requirements and then adjust to them. The process of accepting these limits and
learning to live a different kind of life usually takes several years.

During this time many patients find themselves trapped in a vicious cycle of "push and
crash ", dancing between over-activity and rest. The symptoms and your reactions to
them interact, keeping you stuck in a frustrating loop. (See diagram.) When symptoms
are minor, they push themselves to do the most they can do. But doing too much
intensifies their symptoms and so they relapse ("crash"). The high level of symptoms
forces them to rest to reduce discomfort ("discomfort"). This is usually successful as
rest reduces your pain, fatigue, and other symptoms. But then, frustrated with not
paying anything while they rest, they dive headlong into another round of over-activity
to catch up.

This, in turn, causes another intensification of symptoms, and because of this they
experience another crash.

The "Push/Crash" Cycle

 Translation Note: Patients exceed push limits and as a result experience a great
intensification of their crash symptoms.

Living in response to their symptoms, they are caught on a demoralizing roller coaster
in which high symptoms alternate with periods of prolonged rest, and they feel out of
control. This cycle can be especially frustrating for CFS patients because they often find
that even a seemingly small amount of activity triggers a disproportionate increase in
their symptoms. Unfortunately, this phenomenon called "post-exertional malaise," or
excessive fatigue after activity, is one of the most common characteristics of CFS.

Live within limits

This chapter describes the first of two steps to getting off the roller coaster:
understanding your limits. Fighting against these limits or trying to ignore them usually
results in an intensification of symptoms. Finding and honoring boundaries offers a way
to gain some control and can lead to an expansion of boundaries. In any case your
actions have consequences. The things you do and the way you live have effects on your
symptoms, reducing them if you respect your limits or intensifying them if you don't.

You can think about your limits with several ideas. In our program we often use the
concept of energy envelopes , but this is just a way to symbolize the limits. Maybe
you'll find another way that helps you more. Here are four ways to imagine your limits.

energy limits

First you have to think of your life as if it were made up of three elements. One is your
available energy , the energy you have to do things. This is your energy envelope. It is
limited and is filled with rest and food. Your illness has reduced it, typically it has left it
in half. The second is the energy expended , the energy you lose with physical, mental
and emotional effort. This is the resource you have to achieve things. The third is your
symptoms: fatigue, poor sleep, pain, brain fog.

From this point of view, if you expend more energy than you have available, you will
intensify your symptoms. We call it living outside the limits of energy . This approach
usually leads to the "push and crash" cycle. An alternative is to live within energy
limits. If you keep the energy you expend within the limits of the energy you have, you
have a chance of reducing your symptoms and, over time, you may be able to expand
your limits.

Many students in our program have found it helpful to use the idea of energy limits in
this way. To explain higher symptoms than usual, say something like, "I was out of my
depth this week." Statements like this can help people hold themselves accountable for
the consequences of their actions. The idea of limits also implies the possibility of
control. If you can live differently, you might be able to reduce your symptoms.

The fifty percent solution

A second way to consider your limits is called the fifty-fifty solution, described by
William Collinge in his book Recovering from Chronic Fatigue Syndrome . Every day
you estimate how much you think you could get done. Divide this in two and your goal
is to make this amount smaller. Instead of pushing your limits, try to have the discipline
to do activities up to a safe level. Unspent energy is a healing gift that you donate to
your body.

The energy bank account

A third way to think about your limits is to imagine your energy as money in a bank
account with a very low balance. While healthy people - by sleeping seven or eight
hours a night - are able to store energy to be active for a day, people with chronic
illnesses may only get a few hours of energy from a night's rest. This makes it very easy
for you to spend more energy than you have and go over your bill. If you withdraw too
much from your account, it often happens that you are charged a lot of commissions for
services, in the form of intense symptoms. Once you have taken out too much, you will
have to deposit more into your account, in the form of a break. The alternative is to save
some energy for your healing, staying on budget and controlling the amount of energy
you expend.

The bowl of marbles

A fourth approach is to imagine that the energy you have is like a bowl of marbles. This
is how Linda Jean Frame describes it in Your Personal Guide to Living Well with
Fibromyalgia . This image may be useful if you like to visualize your limits in a
concrete way. In that case, imagine your available energy as marbles in a bowl. (Some
people in our program have literally copied the idea and bought marbles and put them in
a bowl.) Each marble represents a small amount of energy that can be expended.
Estimate your energy level each day and put the appropriate number of marbles in the
bowl. The amount will vary from day to day, but there is always a limit.

You will have to take one or more marbles from the bowl for each activity: one for the
shower, one for dressing, etc. Some projects require more marbles than others.
Likewise, the same task may require more marbles on a bad day than on a good day.
Physical activity depletes your supplies, but so does mental and emotional activity. For
example, if you feel frustrated because you have few marbles, your frustration will use
up some marbles. Stress, tension and fear are big consumers of marbles. Anything you
can do to decrease them will preserve your supply of marbles for other uses.

Visualizing your available energy as a bowl of marbles can help you prioritize. You
probably won't have enough marbles to do everything you want to do. Seeing the
limited number of marbles in the bowl can motivate you to prioritize, to choose to do
the things that are most important to you. Likewise, some days are more demanding
than others. If your bowl is empty, it's possibly time to rest.

Find the limits

The rest of the chapter offers a few tools you can use to define your personal (unique)
boundaries. If you're happy to have a general idea about limits for now, you can move
on to the next chapter that describes strategies for gaining control with pacing. If you're
looking for ways to understand your limits in detail, read on.
Make an outline of your limits

If you want to find out if your current level of activities is appropriate, fill out a table
with your limits in the Limits Diary every day for a week. It only takes a few minutes.
This simple form can help you understand the relationship between your limits, your
activity level, and your symptoms. (See sample below. For a printable version of this
form, go to http://www.cfidsselfhelp.org/library/envelope-log ).

Limits Journal

Level of Level of Level of

Comments
energy activities symptoms

A.M rest
3 2 6

MON P.M
3 3 4

NOC
4 2 3

A.M rest
3 2 5

MART P.M
4 3 3

NOC
4 2 3

A.M Over-activity
4 5 3

WED P.M
5 7 7

NOC
3 2 7

Scale: 1 = No energy, no activities, no symptoms

10 = Energy of a healthy person, high level of activities or worst
symptoms imaginable.

Translation Note: AM is ante meridian = in the morning

PM is post meridian = afternoon

NOC is late afternoon. More or less between 7 and 9 p.m.

To use the form you rate yourself on a scale of 1 to 10 for three elements:

a) Energy level (available energy)

b) Level of activities (energy expended)

c) Symptom level

On this scale, 1 represents, respectively, no energy, no activities, and no symptoms, and

10 represents the energy of a healthy person your age, a high level of activities, or the
worst symptoms imaginable.

You can refill it one or more times a day. If you do it three times a day it helps you see
the variations in your energy level and symptoms. You might find out, for example, that
as the day goes by your energy improves and your symptoms decrease, or vice versa.

The sample shows the completed form for three days. For this person, mornings are
difficult. On Monday and Tuesday, the "am" reading for symptom level was moderate
to severe. The sample also shows the "push and crash" pattern. During the first two days
the person maintained their level of activities within their available energy limits. His
symptom level dropped as the day progressed. Feeling well on Wednesday morning he
tried to make up for the days he spent resting by "recovering" (activity level of 5). The
result of his overactivity was a severe level of symptoms that began in the afternoon.

Set limits one activity at a time

Another technique for discovering activity limits is to set your limits for one activity at
a time. Maybe you know you get tired if it takes you too long to prepare food, for
example, or after running errands or housework, or after talking to people. But you may
not know when that "too much" arrives. One way to answer this question is to focus on
one activity at a time, keeping a simple record of time spent and symptoms.

For example, maybe you think you can stand in the kitchen for 10 minutes while
preparing food. To check this idea, write down the time you started and finished
standing preparing food and how you felt before, during and after. If you see that you
are worse, 10 minutes may be too much. If you feel good, you may be able to increase
that time.

If you feel worse, it's important to understand why. If you feel weak or unstable in your
head, you may have orthostatic intolerance, a condition that often accompanies CFS and
fibromyalgia. If you have pain, you may have exceeded your limit for repetitive
movements or you may have gripped the utensil in the wrong way.

Discover limits through journals

A good strategy for determining your overall activity limit is to keep a diary or health
record. Having a log gives you a way to record what you do over the course of the day
and see the consequences. A diary helps you recognize the links between activity level
and symptoms. You can find a detailed discussion of the diaries in Chapter 7. In this
chapter I would like to make some general comments about having a registry.
Written records can help you in several ways. A simple diary can show you how many
hours and what types of activities you can safely do in a day. It can help you determine
if the effects of your activities are delayed and if they are accumulated over several days
or a week. For me, for example, having a record helped me recognize that I often
experienced delayed effects from exercise. During the exercise I didn't notice an
increase in my symptoms if I walked more than usual, but later during the day, or even
the next day my symptoms were higher than normal. Experience taught me that I
couldn't trust my body to send me a signal when I was doing too much; He only felt the
effects of overexertion later. Experience also taught me that if I went a little out of my
energy envelope for several days in a row, I would not experience stronger symptoms
until the end of that period.

The logs can help you determine if certain activities tire you more than others. Some
patients, for example, have difficulty with exercise, while others become nauseous after
a short time at the computer, and still others become ill if they drive more than a short
distance. In some areas your limits will be tighter and in others wider; In the same way
the pattern of your limits is different from that of other patients.

Self-observation can also help you become aware of the effects of mental and emotional
events and also physical activities. Many people with CFS and fibromyalgia find that
they tire quickly with activities that require concentration, such as balancing a bill,
reading, or working on the computer. There are emotional events, such as worry, anger,
conflicts with others, and depression, that are especially tiring.

Keeping records can also help you recognize subtle links. For example, some patients
have seen a surprising connection between their activity level and sleep. They find that
if they are too active during the day, they become hyper-alert ("fast-paced") and are
unable to fall asleep. This is the opposite of what probably happened to them before
they got sick, when doing a lot of activities caused fatigue and a good night's rest.

Spotting counterintuitive things like this usually only come to light when detailed
records are made.

Develop a detailed understanding

You can gain more control over your illness if you understand your limits in detail.
Such understanding can give you a deep understanding of what you need to do to
minimize your symptoms and increase your chances of improvement. It can also
highlight your areas of greatest vulnerability and thus help you set priorities for change.
You may discover, for example, that getting good sleep is crucial to managing your
symptoms or that minimizing stress has a dramatic effect on how you feel. No matter
what the specific factors are in your situation, this approach can help you recognize
them. You can use a detailed understanding of your unique limits to improve your
quality of life.

Developing a fully detailed description of your boundaries is a gradual process. It can

take months, a year or even more. But every discovery you make will be useful; Any
understanding you develop can help you feel better now. And this is the objective: to
improve your quality of life now.
One way to understand your unique limits is to fill out the Energy Limits form after
asking yourself the questions in the rest of the section. (Printable copies of the Envelope
form and all of our forms are available on the Logs, Forms and Worksheets page
http://www.cfidsselfhelp.org/library/type/log_forms_worksheets ).

What you learn by filling out the Boundaries form can give you a new perspective on
your illness ( http://www.cfidsselfhelp.org/library/energy-envelope ). You may
discover, for example, how many hours of activity a day you can tolerate or how many
times a week you can safely leave your house. On the other hand, you could use your
answers to help you set new priorities. You might conclude that poor sleep is a crucial
issue for you. In this case you can concentrate on getting a good rest. Or, perhaps you
realize that what you need to address is a stressful relationship.

We each have different limits, they depend on our unique medical circumstances and
individual life situation. The limits you experience will be different from those of other
people with your illness. Likewise, your limits will probably be higher in some areas
and lower in others. For example, when I had recovered to about 75% of overall normal,
my exercise capacity was about 35% of what it was before I got sick.

Your mattress may also vary from area to area. "Mattress" is the margin of error we
have. Some people find that even small mistakes in some areas of their life cause a
severe and disproportionate intensification of their symptoms. For example, if they go
to bed an hour later than usual, they are in a mess the next day. Dean Anderson reported
that, during his recovery from CFS, he carefully calibrated the safe amount of exercise.
When I did too much, I would notice a flare-up that would start the next day and last a
week or more. He said he once went on a long hike in the mountains and "the
punishment was a flare-up that lasted several months."

We will look at limits as a combination of five factors:

 Disease
 Activity
 Sleep and rest
 Sensations and moods
 Stressors

Disease

This factor refers above all to the severity of your chronic illness(es). The pattern and
strength of your CFS and/or fibromyalgia symptoms determine the safe level of your
activities. To get a good initial idea of a safe level of activities you need to rate yourself
on the CFS & Fibromyalgia Rating Scale ( http://www.cfidsselfhelp.org/cfs-
fibromyalgia-rating-scale ). As a reality check you could ask an acquaintance to rate you
as well and compare the two things. We have found that, on average, patients rate
themselves five to ten points higher than other people.

The disease factor also refers to the presence of other diseases and the interactions
between your CFS or fibromyalgia and the other diseases. Having multiple medical
problems complicates living with CFS or fibromyalgia. If you have other chronic
illnesses apart from CFS and/or fibromyalgia, you must also record them on the form.
Short illnesses can interact with CFS and fibromyalgia. Typically, CFS and FM
symptoms intensify with an acute illness, although sometimes with a delay, so that CFS
or fibromyalgia symptoms flare up as soon as the acute illness subsides.

Activities

This factor refers to what you can do without becoming more symptomatic. We will
discuss activity in three areas: physical, mental and social.

Physical activity means any activity that involves physical exertion. It includes things
like housework, shopping, standing, driving, and exercise. To define your limits in this
area you have to estimate how many hours a day in total you can spend doing physical
activity without intensifying your symptoms. Since the effects of exertion can be
cumulative, you might ask yourself how many hours a day you can last for a week
without worsening symptoms. You may also notice that certain parts of the day are
better than others. Some people find that they can be active safely during the "good"
hours of the day, but that it can cause symptoms if they do it at other times. Then you
have to assess how long you can do various specific activities such as housework,
shopping, standing, driving, and exercise.

Mental activity means activity that requires concentration, such as reading, working on
a computer, or balancing a checkbook. Three questions to ask yourself in this area are:
how many hours a day can I do mental activity? How much can I do in a single session?
What is my best time of day for mental work? Some people, for example, find that they
can work on the computer without problems for 15 minutes or half an hour, but
experience symptoms if they do so for longer. They may be more productive at certain
times of the day than others. These people may be able to avoid triggering brain fog or
other symptoms by doing two or more short sessions a day, rather than one long one, or
by working on the computer only during certain times of the day.

Social activity refers to the amount of time you spend interacting with other people. I
suggest that you think of social activity in two ways: in person and otherwise (e.g. e.g.
telephone and email). Questions you ask yourself about each type include: How much
time per day can I safely spend with people? And for a week? Does the amount of time
depend on the specific people involved and the situation? (Perhaps you tolerate only a
short time with some people, but feel relaxed with others.) For in-person meetings, you
might also ask yourself whether the location matters. Meeting in a public place or with a
large group can be stressful, but meeting privately or in a small group can be OK.

Sleep and rest

This factor refers to the quantity and quality of both nighttime and daytime sleep. To
understand how you are doing in this area, ask yourself things like: how many hours do
I need to sleep? What is the best time for me to go to bed and get up? How refreshing is
my dream?

Daytime rest means lying down with your eyes closed in a quiet environment.
Questions in this area include: How many hours of daytime rest do I need? How many
moments do I have to rest? How refreshing are my breaks?
Feelings and moods

This factor refers to the emotions we feel, especially worry, depression, anger, and loss.
Questions in this area include: What are the important emotions in my life right now
and how intense are they? This factor also refers to the sensitivity we have to
emotionally charged events and people. Now some situations can trigger stronger
reactions in us than before we got sick. These reactions can intensify symptoms because
emotionally charged events can trigger the release of adrenaline, which often worsens
symptoms.

Stressors

This category refers to the sources of stress in our lives. There are three crucial ones:
economy, relationships and physical sensitivities.

The financial situations of patients with CFS and fibromyalgia vary greatly. Some
believe that their financial situation is similar to that of before they became ill. For
them, money may not be a stress factor. For others, however, the financial pressure can
be great, even overwhelming. Some live alone and with very little income. Obtaining
work incapacity (NT "disability insurance" in the US) can be a long and stressful ordeal.
Even those who get it worry about losing it. Others feel compelled to work when their
body asks for rest.

Having a chronic illness changes relationships, creates new obligations and also new
tensions and frustrations. Your family and friends may or may not understand you.
Relationships can be great sources of support and help, sources of stress, or both.

Physical sensitivities include sensitivity to foods and other substances, vulnerability to

noise and lights, and sensitivity to time and seasons. The questions in this area are: Do I
have allergic reactions to foods? Do I have chemical sensitivities? Am I sensitive to
sensory overload: noises, lights, or stimulation coming from multiple sources at once
(for example, trying to have a conversation with music playing in the background)? Do
the seasons or atmospheric changes affect me?

Summary, vulnerabilities and objectives

At the end of the Energy Limits form you will find three sections that can help you put
together what you have learned and plan for the future. The first, titled summary, offers
you a space to briefly summarize how you are now.

The second, vulnerabilities, asks you to focus on the factors that worsen your symptoms
and those that trigger relapses. When we do this exercise in class, we often get answers
like: doing too much, sleeping poorly, financial problems, stressful relationships,
uncertainty about the future, food and chemical allergies, sensory overload, time with
people, family responsibilities, travel, and more. diseases.

The third section, Objectives, gives you a place to identify the areas you intend to work
on in the near future.
References

Arthritis Foundation. Your Personal Guide to Living Well with Fibromyalgia . Marietta,
Ga: Longstreet Press, 1997.

CFIDS and Fibromyalgia Self-Help website: see Finding Your Energy Envelope article.

Collinge, William. Recovering from Chronic Fatigue Syndrome . New York: Perigree,
1993.

King, Caroline, Leonard Jason, and others. "Think Inside the Envelope," CFIDS
Chronicle 10 (Fall, 1997): 10-14.

10: Pacing
The previous chapter highlights several ways to define the limits imposed by your
illness. This chapter, which is based on the idea that your life can improve if you adjust
to your limits, describes many different strategies for successful adaptation. They all
belong to the idea of rhythm.

Pacing offers you the possibility of a more stable and predictable life. With it you can
live your life according to a plan and not in response to your symptoms, so that you
have the feeling of managing the disease, instead of the disease controlling you. Pacing
offers you an alternative to repeated push-and-crash circles, a way to flatten the roller
coaster of chronic illness.

Setting priorities

The first strategy of pacing is to set priorities. Having a serious illness means that you
won't be able to do everything you wanted to do. How can you decide what to do if you
can't do it all? One way is by setting priorities. There are many systems for setting
priorities. I'll give a general idea of two of them, but perhaps you're more comfortable
with another approach. In any case I suggest that you think seriously and decide what is
important to you. There is an exercise that forces you to choose and you are more likely
to be satisfied with your life if you live it according to your values.

Here's a way to set priorities. First you have to make a list of the activities you do in a
normal week, and calculate the time you need for each one. Second, add the times and
compare them with the limits established with your CFS/FM Rating Scale or with the
Energy Levels exercise from the previous chapter. If the items on your list take longer
than your limits allow (for example, you would like to be active for six hours a day, but
your body only allows four), you will have to make some adjustments to stay within the
energy envelope. Third, decide which activities you will keep and which you will
modify or eliminate. To help you decide, you evaluate the different priorities of your
activities, with A, B and C. You'll keep the ones that are most important to you, but you
may have to modify or delete others.

Another way to set priorities is to make a weekly outline of your time use. For each
hour of the day, you write down one or a few words describing how you spend your
time, using categories that make sense to you. Here is a list: work, housework, family,
husband/partner, friends, exercise, leisure, TV/entertainment, alone time, rest and sleep.
At the end of the week you analyze to see if your use of time is consistent with your
values by rating each one with "OK," "+" (I want to do more) or "-" (I want to do less).

For those items that you can't do or can't do as before, you have to think in terms of
delegating, simplifying and eliminating. Delegating means finding someone else to do a
task that you used to do yourself. For example, there may be family members who want
to share preparing a meal or shopping at the grocery store, or a cleaning service could
clean your house. Help can come from family and friends, someone employed, or
community resources such as religious groups or service clubs. Simplifying means
continuing to do something, but in a less elaborate or complete way. For example, clean
your house less often or prepare less complicated meals. Finally, you might decide to
eliminate certain activities or relationships. Maybe you could stop volunteering or cut
off some friends.

Set limits

Another part of pacing is setting limits. Setting limits means stopping doing certain
things completely and reducing the amount or time you spend on others. An example of
the former is found in Eunice Beck's article, titled "Make a DON'T DO List." By
making a list of things you no longer want to do, you give yourself permission to
remove things from your "should do" list, eliminating activities without feeling guilty
about it. Having a "don't do" list justifies you to take steps to protect your health. Eunice
Beck includes on her list "not volunteering, or being manipulated into doing things that
I know will put a strain on my energy and pain levels." Putting the needs of others
before my own is on the same list.

You can find an example of the power of setting time limits on activities in Bobbie
Brown's article, titled "25 Reasons Why I've Improved." The article describes how he
improved his functional level from about 15% of normal to 35% or 40%. Two items on
Bobbie's list refer to medications, but most of her strategies involve changes to her daily
habits and routines. Use pacing techniques such as incorporating regular, scheduled
breaks and living within your limits. In fact, almost half of her items are techniques for
setting limits for herself, including limits on:

 Drive
 Time on computer and phone
 Stress and sensory inputs
 Socialize
 Travel and time away from home
 Housework and family responsibilities

Activity settings

In addition to managing symptoms by limiting your overall level of activities, you can
affect your symptoms by adjusting the way you are active. Here are several techniques
that our students found useful.
Short periods of activities and spread out activities

Two short bursts of work with a break in between can be more productive and make
you feel less symptomatic than working the same amount of time without stopping. One
student reported her feeling of accomplishment:

Even though I have reduced the amount of time I allow myself to do a task (cooking 10
minutes, computer/reading 15-30 minutes), at the end of the day I am amazed to see
what I have actually managed to do.

The reward of having avoided symptoms can also be great. Take for example a task like
cutting vegetables. Some people may not feel pain if they stop after ten minutes, but
they will feel pain for a day or two if they continue for half an hour.

The same principle can be applied over longer periods of time. It may be, for example,
that your overall level of symptoms is lower if you spread your activities over a week
instead of trying to do many things in one or two days.

It is possible that you will be able to do a lot, even if the activity periods are very short.
Another person's experience in our program shows us this. This lady, who is severely
limited by CFS, was asked to translate two documents from Chinese to English. When
she started, she found that she could only work on the computer for 15 minutes at a time
without feeling sick. He decided to work for four periods a day, or a total of one hour.
He completed his translations in five months. Later he was able to increase his work
hours from four to eight a day.

Change activity

Another strategy to get more done is to change activities. Some patients use this idea to
go from one type of activity to another and switch, for example between physical,
mental and social activities. If you are tired after working on the computer, you could
leave it and call a friend or go to the kitchen and prepare something to eat.

Other patients divide their activities into different categories according to their
difficulty. They schedule only a certain number of the most strenuous activities per day
and make sure to frequently switch between different types. Here is what a student does:

I divide the activities into light, moderate and hard, and then plan my day alternating
activities from the different categories. By pacing myself this way I am able to do more
and minimize my symptoms. In fact, I'm amazed at how much I can get done in a day
now.

The time of day

If you change the time at which you do things, you may increase the amount you
manage to do, without taking more time or intensifying your symptoms. Many patients
notice that, during the course of the day, they have better and worse moments. The most
common pattern is probably that there is improvement as the day goes by, and
worsening in the evening. For some patients, the morning is the best time of day; and
for others, the last hour of the day. The important thing is that you find what is your best
time of day. Here is what one student discovered:

If I walk late in the day I am able to walk around the block twice, if I walk three times, I
collapse. Early in the morning I am able to do three or more laps. I have a margin
between 8 and 11 in the morning which is my best time for most activities, both mental
and physical.

Another student was concerned about the effects of her brain fog on her ability to read
and retain information. If I studied in the morning I could only read for half an hour a
day and I had trouble remembering what I had read. For this reason he decided to
experiment and study in the afternoon. He found that he had good mental stamina for
several hours if he began the afternoon with a short rest. If he studied in the afternoon,
he was able to read for two 30-minute sessions with a short break in between, and retain
the information. Over time he was able to increase his study time to a total of two hours
a day. Experimenting with the time of day allowed him to greatly increase both his
study time and his understanding.

Control symptoms with rest

Integrating scheduled rest into your life is another way to control symptoms and make
everything more predictable. Scheduled rest is somewhat different from the rest used to
recover from overactivity. We call recovery rest rest in response to symptoms. This rest
is an effective strategy for recovering from flare-ups. The rest I will discuss in this
section is a preventative measure. If you take daily, planned breaks, you may be able to
avoid crises and escape the "push and crash" cycle. We call planned breaks of this type
preventive breaks .

Define rest: lying down and eyes closed

In our program we use the term "rest" in a special way. For us, rest means lying down
with our eyes closed in a quiet place. We don't consider rest, things like watching TV or
reading. We see them as activities. They may require less energy than household chores,
errands, or paid work, but they are still activities.

Here's what one student said after one of our courses on rest: "Watching TV, talking on
the phone, or chatting with my family...I've learned that these things could actually be
very tiring, even when I was lying down. Resting with your eyes closed is completely
different and, as I saw, very useful. Before the course, I just thought I was resting;
"Now I know that rest means going to bed with my eyes closed (no TV or phone)."

Preventive rest

Preventive rest means resting daily according to a planned schedule. The duration of the
rest and the number of breaks per day varies from person to person. For people in our
program who have used it, preventive rest usually means one or two breaks per day of
about 15 to 30 minutes each. The benefits of this type of rest are greater stability,
reduced symptoms, and increased stamina. Here is what some of our students have said
about their experience with preventative rest.
Making sure I have one or two short breaks a day with my body and mind completely
relaxed and at ease is actually very beneficial. This way I was able to increase the
amount of activities I can tolerate and feel good about.

[As soon as classes started,] I decided to incorporate two scheduled breaks into the day
and the results were incredible. My symptoms and pain have decreased and I feel more
"in control." My sleep is more refreshing and I even have a better mood.

Since I force myself to rest every day, I see that I have more vigor. And I have noticed
that the graphs of my days no longer go down or increase so abruptly.

Rest between activities, sometimes only five minutes. For the first time since I got sick
four and a half years ago, I feel like I can manage my symptoms and my life is more
predictable.

You will get the most benefit if you are consistent, making rest part of your daily
routine, no matter how you feel. It can be tempting to skip a break when you're feeling
well. At these times it can be helpful to remind yourself that if you rest now, you avoid
more symptoms and more rest in the future. Resting on a set schedule, and not just
when you feel sick or tired, is part of the shift from living in response to symptoms to
living a planned life.

Rest the mind

When you start taking preventive breaks, your mind may become distracted by
thoughts. When this happens, try using a relaxation or meditation technique while you
rest. If you focus your attention on something other than your thoughts, your mind will
relax, and you will rest more easily. (See step-by-step instructions for various relaxation
procedures in Chapter 13.)

Frequent short breaks

As the last quote above suggests, some people find that taking several preventative
breaks a day is helpful rather than just one or two. One person who tried it was a woman
who got tired with almost any effort. It was as if their batteries were draining very
quickly and needed frequent recharges. Thanks to frequent short breaks he was able to
reduce his total rest time.

At the beginning of our course he rested six hours during the day in two naps of three
hours each. After learning about preventive rest, he decided to divide his day into one-
and two-hour blocks, and take 10- to 15-minute breaks between each block. In two
months he was able to reduce his total daily rest time by an hour and a half. After six
months he had reduced his rest time to three hours a day. By resting in small blocks he
added three hours of activity time to each day without increasing his symptoms.

Consistency and planning

Pacing means finding the right balance between activity and rest for your personal
situation. Over time you will be able to extend pacing to your entire life, and live your
life according to a program in which activity and rest are consistent and planned .
Implementing this approach means planning in advance what you are going to do each
day and week and then sticking to it as much as possible. The objective is to gradually
evolve towards consistency, both in activity and rest, each day having a similar amount
of activities and also similar amounts of rest. If you can live according to your plans,
rather than in response to symptoms, you will achieve a more predictable life, gain an
increased sense of control over your illness, and be able to expand your energy
envelope.

Daily plans

You could start by planning one day at a time. In the morning, or even better, the day
before, make a list of possible activities for the day. Then you evaluate your list and ask
yourself if you will be able to do everything on the list without intensifying your
symptoms. If not, you have to identify the items that you can postpone, delegate or
eliminate. For more on making a daily plan, see the Daily Schedule section in Chapter
7.

You have to make sure to include rest in your planning. As I described in the section on
rest above, rest must be integrated into your day as a regular part of your program. Your
life will be easier if you make rest consistent, if you reserve certain times of the day to
rest for a while. The idea is to rest according to a plan, and not in response to symptoms.
Here is how one student described her planning:

Every night I write down my appointments and other possible activities for the next day.
By doing this I am able to recognize activities that I don't really have to do and that I
can postpone. This frees up time for scheduled rest throughout the day.

When you plan your day and live according to your plan, your symptoms are likely to
be better controlled and you will be tempted to do more. This temptation is part of the
"push and crash" cycle you are trying to break. Remember that the goal is to have a
consistent level of activity, not to push hard when you feel good and then crash when
symptoms intensify.

Developing routines is one way to increase consistency. If you do things regularly and
following customs, you will reduce energy expenditure, because you live according to
habits and are not continually confronted with new situations. Living your life
predictably can help reduce crises, because routine is less stressful than novelty and
because it increases the chances of living within your limits. Your ability to do this
depends on understanding your limits in detail and then creating a schedule of activities
and breaks that respects these limits.

Here is what a student says:

Developing a routine and following it has been helpful to me because familiarity has
reduced the number of surprises and lowered the attention I have to pay to unexpected
events. If I always wash my face after brushing my teeth, well, when I'm done with my
teeth, I don't have to think about what I have to do next.

I recommend that you set time limits for each activity, because your body may not give
you a signal when you exceed your limit. You may feel fine as soon as you go over your
energy envelope and may not experience an increase in your symptoms until later.
Many times the effects of overexertion are delayed. This is why you can't trust your
body to tell you when you have to stop. If you find your limits through experimentation,
you can avoid the "crash" by limiting the duration of your activities that you have found
safe.

Weekly plans

When you feel comfortable planning one day at a time, try moving to scheduling for
longer periods, like a week. The rest here is to estimate what level of activity you can
sustain for a while without worsening your symptoms. Consistency in the level of
activities brings control. By experimenting you can find a sustainable level of activity.
Maybe you can be active for two hours a day, or four hours or fourteen. The way to
determine your limit is to try different amounts of activity and observe the results. For
more, see the Weekly Program section of Chapter 7.

I clearly recommend that you have some written records. A health journal can reveal
connections between what you do and your symptoms. Since it shows you the effects of
your decisions, it also helps you be responsible for your actions. And it can motivate
you by showing you that staying within your limits rewards you with a decrease in
symptoms and a more stable life. (Chapter 7 discusses how to make records in detail.)

How to be successful with pacing

Dean Anderson wrote that successfully living with Chronic Fatigue Syndrome has
required him to adhere to a strict regimen, "without periodic lapses." Although most
people understand that staying within their energy envelope leads to a better quality of
life, many believe that it is difficult to do. If you find yourself in this situation, what can
you do to increase your consistency in living within your limits? When we ask people
who have had success with pacing, they make the following suggestions:

Use routine

Having a regular daily schedule eliminates a lot of decision making. One student said,
"Instead of having to wonder whether or not something fits inside my envelope, I try to
stick to a program that I know is safe." For a guide and samples of daily and weekly
schedules, see Chapter 7. A related idea is developing new habits. Although pacing may
seem daunting at first, it can become an ingrained habit over time once you change your
daily habits. Bobbie Brown was able to do it, as we saw described earlier in this chapter.
First he learned his limits for activities like driving, time on the computer and on the
phone, and socializing. Then he gradually changed his life to fit within the boundaries
he had discovered.

Visualize the consequences

One way to overstep your boundaries is to succumb to the temptation of doing

something that seems attractive at the moment. One way to avoid such a mistake is to
stop and visualize how you will feel if you step out of your envelope. One person said,
"Imagining fatigue and brain fog provides a counterbalance to the immediate pleasure I
anticipate from doing something that would push me beyond my limits." Another
person said that when she is tempted to step outside her envelope, she remembers that
all her actions have consequences and asks herself, "Can I live with the
consequences...is this activity worth the consequences?"

Develop personal rules

Living according to personal rules means not having to think and also diminishes the
power of spontaneity because it would overwhelm your good judgment. Some people
have had success by using very detailed, individualized rules that protect them from
doing too much. A person with severe CFS developed three rules for himself: no more
than three departures from home per week, no driving more than 20 kilometers from
home, and no telephone conversations lasting more than 20 minutes. Thanks to these
rules, he was able to focus on his longer-term goals whenever he felt tempted to act in
the moment. If you're worried about your brain fog, you could post some rules
somewhere prominent, like the refrigerator.

Some people create a set of rules for specific circumstances. For example, someone
noticed that, after a cold or flu, they often returned to their normal level of activities too
quickly. It was made a rule to take one extra rest a day for at least a week after the
symptoms of the secondary illness ended. To develop specific rules for yourself, it is
easier to manage your illness if you ask yourself these two questions: What situation am
I in right now? What is my standard for this situation?

A related approach is, to quote the title of an article on our website, to develop a global
set of "Personal Guides for Managing Chronic Diseases." The idea is a few rules to
guide you in your journey with chronic illness, a list that you can consult in times of
confusion to guide you in making a healthy decision.

Have records

A health diary can be a mirror that provides you with motivation, both positive and
negative. Having written proof of the effects of your actions can help you remain
responsible for your actions. You can also use your health journal as a positive
motivator, because it provides proof that staying within your limits really makes a
difference. More on this topic, including some sample health records, in Chapter 7.

Pay attention to body messages

Learn to listen to your body. You can gradually retrain yourself to respond differently to
your body signals. Instead of pushing forward when you feel tired or sore, you can learn
to see the symptoms as signs that it's time to rest. More about discovering and paying
attention to the warning signs of outbreaks in the Outbreak Worksheets section in
Chapter 7.

Practice forgiveness

Forgive yourself. Nobody is within their limits all the time. And life has its ups and
downs; some times are more stressful than others. Instead of beating yourself up when
you slip or when circumstances overwhelm you, it's better to simply ask yourself,
"What can I learn from this experience?" and then you move on.
Limits and work

What do you have to do when there is a conflict between work and your limits? Should
you continue in your current job despite the suffering or should you make some
changes? Work issues can be among the most difficult to fix. There may be greater
financial consequences when you reduce hours or stop working. Work also provides
social contacts and is a large part of most people's identity.

If you are on either end of the spectrum in terms of the severity of your illness, the
answer may be obvious. Those minimally affected by CFS or fibromyalgia may be able
to continue working full time and accommodate their illness by taking weekend breaks
or reducing their social life. On the other hand, some people are so severely ill that they
cannot work. For them, the best option may be to try to get private disability pay from
the company, government pay from Social Security, or both.

For those in between, here are four options to consider.

Get work accommodations

Under the Americans with Disabilities Act, employers are required to make “reasonable
accommodations” for people with disabilities. Such accommodations may include
changes to the work schedule (such as flexible hours), providing an ergonomically
appropriate chair, or changing job responsibility. Using accommodations can be a way
to check if the job is viable. If your efforts to adapt work to your limitations are not
successful, you may need to consider applying for a disability pension or opting for one
of the alternatives described in the next three paragraphs.

Change for a part-time job

Some patients respond to their limitations by switching from full-time work to part-
time. Working 15 or 30 hours a week is less exhausting than having a full-time job and
allows you to lead a less hectic life and have more time for rest. They may also allow
you to have a more flexible schedule. Reductions in work hours may also be
accompanied by a move to a position with less responsibility. Like reducing hours,
changing jobs can free up energy for other purposes, although such a change requires
some emotional and financial adjustments.

Take a work permit

Some companies allow their employees to take work leave of up to several months. A
permit can allow you to focus on improving and can help you clarify whether you are
able to work and, if so, how much.

Change carrer

Finally, you could think about changing jobs to get one consistent with the limits
imposed by your illness. There are people in our program who have moved to a position
with less responsibility, to a less emotionally draining job, and to a less physically
demanding job. Some have set up a business in their home, especially the kind that
allows them to have a flexible schedule to accommodate the ups and downs of their
illness.

Note on disability

It is complicated to decide when to apply for disability. If you work part-time for a long
time before applying for disability, your disability amount may be lower, since the
amount of pay is based in part on income. If part-time work does not reduce your
symptoms, it may be better not to wait to apply for disability. Disability eligibility is
based on recent income, so waiting to apply can create a complication.

One person's solution

To read how someone has resolved their work dilemmas, read Kristin Scherger's article
on our website titled "Expanding My Envelope: How I Balanced Work and CFIDS."
(The article is in the "Success Stories" section of the website) After becoming ill with
CFIDS (her term for Chronic Fatigue Syndrome), Kristin, an occupational therapist,
first switched from full-time to part-time work. This solution didn't work; He continued
to have strong symptoms and his life seemed out of control. He had to recognize that he
was not getting better and that CFIDS was an ongoing, not a temporary, part of his life.

Keeping a journal convinced him that he was beyond his energy limits. On the days he
worked, he scored around 30 on our scale, and 45 when he didn't work. He decided that
if he didn't change jobs "he would never get off the roller coaster." His move to an
administrative position has allowed him to gain stability and increase his energy
envelope. He wrote of his new life: "My level of activities and symptoms are now even
better than a couple of years ago when I wasn't even working." It is scored 60 most of
the time and sometimes even higher.

Kristin's story illustrates two common experiences of patients' struggles to balance

illness and work. A long-term solution must first be found, which often takes a long
time. Kristin tried several arrangements before finding one that worked for her. Second,
the possible solution usually respects the limits of the disease. Kristin's attempts failed
until she found a situation that her body was able to tolerate. Once the tension was
removed, his body was able to improve enough to be able to expand its limits.

Translator's note

In Spain the laws regarding employment status are slightly different. You can find more
information on the following websites:

http://www.lasbarricadas.net/fibro/

http://www.discapnet.es/Discapnet/Castellano/Legislacion/default.htm

http://noticias.juridicas.com/base_datos/Admin/rd1971-1999.html
Days off, vacations and other special events

Special events such as holidays and family parties present a double challenge for people
with chronic illnesses. Non-routine events require more energy than daily life and
temporarily shrink your energy envelope. If you don't decrease your activity level to fit
your temporarily smaller envelope, the event will intensify your symptoms. At the same
time, you may want to be more active than usual or feel pressure from others to be more
active, a second possible cause of an outbreak. This is why a special event shrinks your
envelope at a time when you are tempted to do more than usual. How can you answer
this dilemma so that you can enjoy the event without paying too high a price? Students
in our groups have suggested several strategies.

The most common strategy is to rest before, during and after the event. Store energy by
resting extra before the event; limit symptoms by getting extra rest during; and get extra
rest as much as you need afterwards. A member of one of our groups gave an example.
If you are traveling for a week, plan for a two-week period. Try not to do any extra
activities for a couple of days before and a couple of days after the trip. Also try to pace
yourself carefully during the trip, resting during non-active times. Once back, continue
resting extra. Another person reported his strategy:

It took a long time, but I finally realized the toll traveling and driving take on me. I
adjusted by adding more rest: before, during and after outings. For about a week
beforehand I double the daily time I normally rest. I rest longer than usual while on
vacation, and extend this practice for several days after I return. I also managed to
greatly reduce the effects of driving; I stop every two hours, tilt the seat back and sleep
for about 10 to 15 minutes.

Another strategy is to plan your trip in detail. Decide carefully what you are going to
take, especially the things you need to rest. Find out the event schedule in advance and
decide how many activities you will do. Here is a student's description:

Making a commitment to myself to stay within a safe level of activity has helped me
resist the temptation to do too much when I'm on the road. I can tell myself, "I know
you want to do this and that people are pressuring you, but you decided before you
came that this wouldn't fit in your envelope."

A third technique is to talk about your limits with the other people involved in the event.
Once you've decided on your level of involvement, tell them so they know what to
expect from you. By talking to others about your limits in advance, you can reduce the
chance of surprise or disappointment. Consider staying in a hotel instead of with family
because that way you will have privacy and can better control your level of activities.

By delegating, you can also make your special event easier. One way to enjoy a special
outing or event is to pass on tasks to others. If you are used to preparing all the meals
for a party celebration, ask some family members to each bring a dish. If you travel by
car, allow others to drive.

Finally, you have to adjust your expectations. Instead of resenting everything you can't
do, focus on what you can do. Here's what one person said.
I have benefited from the idea that half of something is better than nothing...both for me
and for others. Even if I couldn't do everything I did before I got sick, making
commitments has allowed me to participate, sometimes getting out of myself a little
about what was causing my symptoms to increase a little, but without suffering a severe
flare-up.

Since special events are known in advance, you can plan for them. One planning
technique is the Special Events spreadsheet, described in Chapter 7. This form helps
you decide how to spend your time during the event and also the actions you can take
during the period leading up to the event and the time after.

Other tips and techniques

Many patients have increased sensitivity to light and noise. They notice that their
concentration is affected when they have too much sensory information. If this is your
case, you may be able to do more and have a lower level of symptoms if you focus on
one thing and simplify your environment. For example, you may understand what
you're reading better if you turn off the TV while reading or move to a quieter location.
If noisy restaurants bother you, try going when there are fewer people. If large groups
give you trouble, try meeting with just a few people. If the media bothers you, limit
your exposure, especially to movies and television.

Patients with neurally mediated hypotension (NMH) are sensitive to standing because
they are subject to sudden drops in blood pressure, which makes them feel like they will
faint. An energy-saving technique (and safety measure) is to sit down to prepare meals
and use a plastic stool in the shower.

You may be able to do more, avoid symptoms, or both if you use gadgets to help you.
Some patients with a low tolerance for standing, sensitive to sensory input, or both have
fewer problems shopping if they use a scooter or motorized chair. Many large stores
have these gadgets available for free. One person in our program reported having
spectacular results using a motorized chair at the grocery store. Before using it, he got
so tired from his weekly shopping that he had to lie down for two hours when he got
home. With the chair you no longer have to rest at all after shopping at the supermarket.

How we react to events can affect the amount of energy we have. If we are able to
respond in a relaxed manner to stressful situations, we can preserve energy that might
otherwise dissipate into tension and anxiety. A student in one of our classes set a good
example. Once she wanted to be a good hostess for a birthday party, moving around
making sure everyone had a good time. After an hour she felt tired and unwell, a sign
that she had overdone it. The following year at a similar party a different expectation
was created, imagining that she was a queen observing the situation from a throne.
Freed from the self-imposed expectation of making sure everyone had a good time, she
found herself with good energy for more than two hours. By relaxing he reduced his
worry and increased his energy.

Two success stories

To give you an idea of what you can achieve with pacing, I will describe the experience
of two people with Chronic Fatigue Syndrome: JoWynn Johns and Dean Anderson.
JoWynn was severely restricted by her illness, but living within her energy envelope,
she improved within a few years. Initially Dean was functioning at a higher level, and
then he recovered. (Both articles written for the CFIDS Chronicle, the magazine of the
CFIDS Association of America. They are in the Success Stories section on our website)

Learn to control symptoms

After a career as an executive and management consultant, JoWynn Johns developed

CFS symptoms in 1991. He divides his response to CFS into five phases. For the first
two years, a period he calls "I'm still alive," he continued to live a busy life "despite
feeling horrible." Between 1993 and 1997, a time he calls his "all-out effort to get well,"
he collapsed and in response tried many different approaches, including exercise, yoga,
meditation, homeopathy, special diets, medications and supplements.

None of the strategies he tried helped him and he experienced repeated push and crash
cycles. During this period there were two changes that took her in a more productive
direction. First he began to listen to his body, asking it what it needed. Second, he
changed his goal. He gave up the idea of recovering and decided to focus on feeling
better.

During the third phase of “learning from my own body and experience,” JoWynn aimed
to determine what she needed to do to feel better. He began by asking himself what it
meant to have a "good day." He decided that it would be a day with no minor symptoms
and a minimal level of major symptoms. A good day would also include being able to
go for walks and do crafts. Since she found a strong connection between sleep
disturbance and bad days, she also developed a definition for a good night: sleeping at
least seven hours and waking up refreshed.

Then he asked himself "What do I have to do to have good days and nights?" After
studying his diary and notes, he concluded that he could have good days if he met six
conditions: spending 12 hours a day in bed, sleeping seven hours, staying home,
restricting his daily activities, not working more than an hour at a time on the computer.
and not have visits or long telephone conversations. This was his energy envelope, his
boundary group. If you stayed within it, you were offered a way to feel "your best." (Its
limits were quite restrictive, corresponding to a score around 20 on our Rating Scale.
Your limits are probably different)

In the next period, which he called "developing a feedback system," JoWynn focused on
developing a system so that he would have a record. It included a monthly calendar, in
which he noted his activities and symptoms each day, grading each day and night as
good or bad. He used color codes so he could immediately see how he was doing. He
said "this kind of visible feedback motivates me." Over time he was able to define
patterns. It was predictable that poor sleep was associated with bad days. But he also
found that mental and emotional effort caused as many symptoms as physical activities.
Explaining the motivation for developing the scheme, he said:

I needed to make this information visible to demonstrate to myself the effects of mental
and emotional effort, and also physical activity. I also wanted concrete evidence of the
effects of staying within my limits. Since it is very hard for me to limit my life in this
way, I had to prove to myself that it was worth it.
He called the last phase "I accept my limits." By living within her limits, JoWynn was
able to greatly reduce her fatigue and other symptoms. Over time, the percentage of
good days per month increased significantly, from 35% in 1996 to 80% and more in
1999. Updating his story in late 2002 he wrote: "I now have good days almost 100%
symptom free. Tremendous difference! For me, having CFS is like having diabetes: it is
a chronic condition that can be managed, but it requires lifestyle adaptations."

Updating his situation in 2006 he wrote "I have adapted to CFS. "It's been many years
since I've been as sick as I was at the beginning." He also reported certain
improvements in his condition. I hadn't experienced Irritable Bowel Syndrome in two
years and was sleeping noticeably better. He also reiterated his belief in the value of the
self-management approach, saying "over the years I have experimented with various
treatments, remedies, regimens, supplements, and even some medications, briefly and
with poor results. None have made the slightest difference to my well-being. The only
things that make me feel better and keep me relatively stabilized and able to achieve my
priorities are scheduled rest and pacing."

A story of recovery

In some ways Dean Anderson's experience was different from JoWynn's, but it was
similar in others. His starting point was higher; During the first years of his illness he
functioned at about 60 percent of normal. Their final result was also different; He was
able to recover and return to work full time, travel, and have an active social life. But
even despite having different starting and finishing points, their approach was quite
similar.

Writing nine years after beginning CFS he reported that most of his recovery occurred
after the fifth year with his illness. He found that both his attitude and his actions were
crucial to his improvement. To explain this, he writes that his approach to CFS changed
over time. Initially he believed he could recover with determination and hard work,
wanting to get well. With this approach he noticed some improvement, but he was
devastated with flare-ups, which he saw as signs of a failure of his willpower.

Over time he came to believe that the key to his recovery was adopting a different
attitude, which he called a particular type of acceptance. He doesn't describe it as
resignation, but rather as "acceptance of the reality of the illness and the need to lead a
different kind of life, perhaps for the rest of my life." Explain:

The “Effort” required to recover from CFIDS is an exercise in discipline and hope, not
an exercise in determination and effort. The necessary discipline is exactly the opposite
of the discipline so valued at the school, professional and athlete levels. It is to
recognize and adhere to our known limitations and to follow a strict regimen without
periodic errors. It is about not succumbing to family or social pressures to return to the
cat and mouse race. It is the will to protect oneself, not to overdo it, and to find a way to
be productive and find satisfaction in unfamiliar and difficult circumstances.

Theirs is not an attitude of conquering the disease, but rather of listening, understanding
and adapting to it. He emphasizes that it is living within the limits in a disciplined and
consistent way, staying loyal to what his body needed and looking for ways to find
meaning in another type of life.
He wrote that he has enjoyed a good relationship with his doctor, but that he did not
benefit from visits to a chiropractor, homeopathic doctor, or acupuncturist. He has also
tried several alternative treatments, but concluded that none of the "remedies, medicines
or dietary supplements I tried have helped me in the slightest." He came to believe that
recovery would depend solely on his efforts and, with this belief, he formulated a
"recovery strategy."

The central element was defining a safe level for work. By experimenting, he concluded
that he could work six hours a day without intensifying his symptoms or jeopardizing
his recovery. He asked to be assigned outside his company headquarters so he could
better control his daily schedule. Although he remained quite symptomatic, he was
successful working at that level while very gradually improving. She used the hours she
managed to free up with this part-time scheme for self-care. I left the office to eat and
spent part of the midday period resting. Likewise, when I got home, I would take a one-
hour nap and do 20 minutes of visualization. I also had other routines and boundaries.
On business trips he refused to fly at night, took a nap upon arriving at the destination,
and rejected many invitations to dinner. Summing up his strategy he says "gradually I
have learned to pace myself to stay within my limits."

He also regularly exercised, experimenting to find his limits in that part of his life, just
as he did with work. He used a heart monitor to assess the intensity of his exercises and
kept records of "the duration of the exercise and how he felt before, during and after
each set of exercises and especially how he felt the next day." She figured out her best
time to exercise (late afternoon or early evening, after a nap) and the "right type,
intensity and duration of exercise for me." I alternated aerobic exercise and resistance
training. More importantly, he developed a new attitude toward exercise. As a recovered
"Exercise Addict" you train yourself to enjoy exercise for its immediate benefits,
without having progress as a goal.

As he gradually improved he lengthened his work day, and much of the improvement
came after his fifth year of illness. He summarizes his advice to other patients with the
words acceptance , discipline and hope. He believes that what CFS patients need is the
strength to accept their condition even if others refuse to do so, the discipline to
consistently do the things that promote improvement, and an attitude of hope.

summarizing

Both JoWynn and Dean used similar strategies to respond to Chronic Fatigue
Syndrome. They began their search for improvement by accepting the reality of the
disease and the need to lead another type of life. They found their limits by listening to
their bodies, experimenting with different levels of activity, and keeping detailed
records. They both had a flexible approach in which they continually reflected on their
experience and learned from it. And they both verified that the key to improvement was
in disciplining themselves to live coherently. [I37] with the limits of his illness.

Their experiences suggest that patients may be able to significantly influence their
symptoms and quality of life through pacing, although each person's illness may put a
different ceiling on the extent to which activity levels can be improved.
References

Self-help website for CFIDS and Fibromyalgia: See Success Stories for articles by Dean
Anderson, Bobbie Brown, JoWynn Johns and Kristin Scherger. See Coping Strategies
for the article by Eunice Beck and the article on a personal guide.

11: Minimize breakouts

Flare-ups, sometimes called crises or relapses, are a common and often demoralizing
part of chronic illness. Apart from creating additional pain and discomfort they can be
deeply worrying. Getting worse can raise questions about whether control and lasting
improvement are possible. This chapter offers strategies to help you manage the
irregularity of your illness and its physical and psychological effects.

Are you having a breakout right now?

If you are currently experiencing intense symptoms you need to ask yourself if your
symptoms are familiar or new, or if they are symptoms with a new intensity. If your
situation seems familiar to you, the suggestions below might help you. If your situation
seems new and different, you might have something new besides CFS or fibromyalgia.
In this case, think about getting medical help. If your symptoms are very acute and
severe, for example if you have chest pain, faint, or vomit blood, you need to seek
medical help immediately. Don't assume that intense symptoms are simply a flare-up of
CFS or fibromyalgia. Remember that a majority of CFS and fibromyalgia patients have
one or more additional medical problems and that CFS and FM patients also suffer from
acute problems and long-term illnesses.

Limit the severity of outbreaks

There are many things you can do to get over an outbreak. Some are actions; Others are
mental adjustments to make the situation more understandable or that bring comfort.

Extra rest

The most common strategy to overcome outbreaks is extra rest until the crisis subsides.
As one student in our program says, "When I have a flare-up, no matter the reason, I tell
myself to do what my body tells me: rest! "If I have something planned for that day I try
to tell myself it can wait until another time." Another says, "One of my rules for living
with CFS is: if all else fails, go to bed. This rule gives me permission to realize that
sometimes I have no power over the illness and that the smartest thing I can do is
surrender to it."

Act immediately

You can reduce the duration of an outbreak or even prevent it by taking action as soon
as symptoms begin to intensify. A member of one of our groups said, "As soon as I start
to feel nervous, dizzy, or tired, or have muscle pain (all indicators that there is an
impending flare), I stop what I'm doing, go to my bedroom, go downstairs." the blinds
and I go to bed. This simple action makes me start to feel better. Then I practice deep
breathing to clear my mind. This relaxation time can take me from 45 minutes to more
than two hours. I usually wake up refreshed and energized and can resume all my
normal activities." Lynne Matallana reports similar success in limiting the effects of
migraine. She writes that she taught herself to recognize the warning signs of an
impending migraine attack and that, by immediately employing relaxation techniques,
she was able to reduce the intensity of the migraine or even prevent it. More about
spotting and paying attention to the warning signs of outbreaks in the outbreak
prevention discussion in Chapter 7.

Postpone, delegate, or delete tasks

Reducing activities by postponing tasks, asking for help, or even leaving something
superfluous can help speed up the end of a crisis. One trainee said, "If I really can't do
something, asking for help or giving up less important things helps me reduce stress and
my flare-ups." Another recommends "In case of an outbreak, I don't hesitate as much as
before to ask for help, both for daily tasks and for anything else that arises. I know that
my family wants to help me and they feel good if they give me a hand."

Seeking comfort and support

Cursillistas report that it helps them to tell themselves words of comfort and connect
with other people. Because outbreaks can be very discouraging, it can help to say
calming words to yourself, such as "this outbreak will end, just like all the others did."
Self-soothing can help you relax and calm the inner voices that insist you will never get
better. For more on talking to yourself, see the section titled "Changing Your Thoughts"
in Chapter 13.

It may be helpful to talk to someone you trust because they can give you suggestions or
comfort, or simply to feel connected to another person. One student said "When I have a
crisis I try to seek support. It's much harder to be alone when I'm in an outbreak, which
is why I look for a kind voice on the phone to comfort me." Another wrote, "I've found
it very helpful to talk to someone when I'm in a crisis. Many times it doesn't matter what
we talk about; "Simply feeling connected to something foreign to me helps lift my
spirits."

Get prepared

Having things close at hand and in their place can help reduce the anxiety of a flare-up
and make it easier to deal with. Several students have described how they organize
themselves for outbreaks. One has large supplies of food at home, including food that
one's husband and children can cook. He has also reorganized his bedroom to have what
he may need near his bed. "It gives me a lot of peace of mind to know that I am
prepared when an outbreak comes."

Slowly return to normal

Long periods of rest can create frustration if you think about everything you want to do
but can't because of your symptoms. This frustration can lead you to return to your
normal level of activity before your body is ready, leading to another flare-up. The final
strategy to limit the impact of outbreaks is to gradually return to a normal level of
activities. One student writes, "When I feel the urge to go back to work too soon, I
visualize how I would feel if I did. This is usually enough to convince me to take extra
rest for another two days."

Identify flare triggers

Some outbreaks are due to the oscillations of your illness ("waxing and waning"), but
other crises are caused by factors that you can more or less control. These factors can be
actions you take or events that you can learn to manage or avoid. You can start by
getting your flares under control by identifying their triggers, things that predictably
cause your symptoms to intensify. Here are some breakout triggers that are often
mentioned by people on our program. For more ideas, see the section on flare triggers in
Chapter 7.

Excess activity

As I have discussed previously, living “out of bounds” is a common cause of intense

symptoms via the “push and crash” cycle. People in our groups have distinguished
between overactivity of this type, which they sometimes call regretful overactivity, and
another type, planned overactivity. The first may be a way of life that gives you the
feeling of being out of control; the latter is the result of a premeditated decision.
Sometimes an event may be important, such as a vacation or participating in family
parties, and you are willing to accept the consequences. (See discussion of special
events below.)

Sleep bad

Non-restorative sleep can intensify symptoms and precipitate a vicious cycle in which
symptoms and poor sleep reinforce each other. This is an especially common problem in
people with fibromyalgia. (For ways to escape the circle, see Chapter 8.)

Other diseases

Getting an acute illness or having multiple chronic illnesses can reduce energy and
worsen symptoms. You can reduce flare-ups by treating other conditions and
recognizing that they intensify symptoms. One person in our program said "I've learned
that I have to lower my expectations and my level of activities when I have an extra
illness, so that I don't make this inevitable flare up worse and last longer." Another
commented "I have realized that I have four or five different health problems. I have to
treat the others, but also take care of my CFS."

Stress

CFS and fibromyalgia are very sensitive to stress, so minimizing stress can prevent
flares. Stressors can include emotionally charged events, such as financial problems, a
disability review, or a move, or they can be long-term, such as a family conflict. One
student said, "I try to avoid all situations that will produce stress because stress
inevitably triggers flare-ups." When another student was asked how she had reduced her
fibromyalgia symptoms, she replied, "I divorced my husband." In the same way we can
intensify crises with our expectations of ourselves or with our reactions to stress. More
in the chapter on stress management.

Special events

Even occasions we look forward to, such as an outing, wedding, or vacation, can trigger
an outbreak. Events like these are often associated with expectations (both internal and
from others) about our level of participation, making us feel pressured toward a higher
level of activities than usual. But such events do not have to lead to an outbreak. You
may be able to minimize the cost of your participation by adjusting your program. You
could, for example, attend a family party instead of hosting. Either you go and only stay
for two hours, instead of the whole day, or you rest regularly. Traveling may be more
feasible if you are less active than usual and get extra rest. For more on planning for
special events, see the section titled “Special Events Spreadsheet” in Chapter 7.

Prevent outbreaks

You can use your knowledge of flare triggers and the strategies described in this section
to bring them at least partially under your control, limiting both their severity and
frequency. You will find eight strategies described in this section. You may also want to
use the spreadsheets in Chapter 7 to become aware of the warning signs of outbreaks
and to plan your response. (See the sections on “Outbreak Warning Signs” and
“Responding to Warning Signs” in this chapter.)

accompany you

Pacing is a favorite strategy to bring stability to life and to prevent flare-ups. The term
covers a variety of strategies, such as those described in Chapter 10. At a minimum,
pacing means adjusting activity to the limits imposed by the illness and circumstances.
As one person told us, "I have substantially cut back on my overall activity level, and
when I feel tired, I cut back even more."

Pacing can also involve having short periods of activity. Particularly with tasks that
involve repetitive movements, such as preparing food, you can avoid symptoms by
breaking the task into five or ten x-minute segments with a break between each work
period. The same principle also applies to mental work as suggested by one student who
says "Stressful things, like the tax return, I do in little pieces. If you let them build up,
you only increase stress."

You may be able to prevent an increase in your symptoms by switching between

different activities and including healthy activities in your day. "What helps me is to
balance my physical and mental activities, separating them with frequent breaks. "I have
recently introduced a checklist system to remind me of activities that are good for me,
such as walking, exercise, relaxation and leisure."

Finally you could add stability to your life by living according to a more realistic
schedule. This involves both scheduling an appropriate number of activities and
allowing plenty of time between them, without striving to include too much. One person
in our program explained implementing programming by setting priorities. She said "it
definitely helps me to make a list of weekly and daily activities so I can prioritize them.
I know how much physical activity I am capable of handling in a day, I remember and
make my list accordingly. "I allow myself at least an hour of rest in the afternoon, so
there is a place for it in my daily list."

Another pacing strategy is to have a daily routine. Living your life in a planned and
predictable way can help reduce flare-ups for two reasons. First, routine is less stressful
than novelty. And second, having a predictable life increases your chances of living
within your limits. Your ability to do this depends on first understanding your limits in
detail and then creating an activity and rest program that respects these limits. You can
read about techniques for defining your boundaries in Chapter 9.

Some people have had success with very detailed, individualized rules that they created
for themselves, as described in the chapter on pacing. A variant of this strategy is to
write a daily "to do" list. Some people with severe brain fog have found it helpful to
post a few instructions for themselves somewhere prominent, like the refrigerator. There
are ideas about creating “to do” lists in daily and weekly spreadsheets in Chapter 7.

Another similar strategy is to have a set of rules for specific circumstances. For
example, there are people who set limits on how far they want to drive, how much time
they want to spend on the computer, and how much time they want to spend with their
family. If you develop specific guidelines for yourself, you can simplify the
management of the disease by asking yourself two questions: "What situation am I in
right now?" and "What is my rule for this situation?"

Rest

Scheduled breaks, if done regularly, can prevent flare-ups. Likewise, taking extra rest
before, during and after special events, such as excursions and vacations, or after a
secondary illness, can help you avoid crises or limit their severity. Here's what two
people from our program say about the value of rest.

I think that my two daily fifteen-minute breaks have been the most important thing I
have done to help my recovery.

I can't get enough rest! The more quality rest I can incorporate into the day, even if it's
just for short periods, the better I feel.

If you know that a season of unusual exertion is coming up, something like a hike or a
family gathering, you could reduce its negative effects by resting more than usual for
several days beforehand, and also getting extra rest during and after the event. A woman
in one of our groups took this approach to going to a wedding. The previous two days
he took extra long naps and limited his activity. He arrived early to the wedding, having
organized in advance a place where he could sleep after the ceremony. During the week
after the wedding he also took longer naps than usual and limited his activity. Although
she experienced some intensification of her symptoms on the eve of the wedding, she
did not have a crash. He called the experience a double success, as he enjoyed the
wedding and limited the price he paid.
Have records

Keeping a health diary can reduce flare-ups in two ways. First, the logs help you define
your energy capacity, because they give you a detailed understanding of your limits.
The logs can allow you to answer questions such as: How many hours a day can I be
active without intensifying my symptoms? How much sleep do I need? How
consistently do I have to stay within my limits? What are the effects of stressful events?
What are the triggers for my breakouts?

Second, records can serve as a source of motivation. Seeing evidence of a connection

between overactivity and increased symptoms can help you stay accountable for your
actions. Likewise, making a graph of your records can offer powerful visual
reinforcement of your successes, demonstrating motivation for improvement. As
JoWynn Johns wrote "I made a graph of my monthly percentages of good days and
nights....I needed to make this information visible to prove to myself the effects of
mental and emotional effort, and physical activity. I wanted concrete evidence of the
effects of staying within my limit. Since limiting my life in this way is so hard for me, I
had to prove to myself that it was worth it."

Make mental adjustments

Many of the management techniques that help limit flares require new habits and
behaviors, but their foundation is your new lower expectations, which are based on
acceptance of your limits. Here's what several students in our program said about the
mental adjustments they've made.

It has been important for me to accept my new life with CFS, move forward and realize
that I am not going to go back to my old self. I have had to redefine my expectations
based on the new me. Lowering my standards and trying to free myself from
perfectionism has been a big part of it.

I've decided that for a change, it's okay to take care of myself, the same way I would
take care of someone else.

I have accepted that I will probably never fully recover and by realizing this, I am
discovering better ways to live with illness.

Respect the body's signals

When symptoms begin, there is a strong temptation to respond by "pushing through." A

different approach, listening to body signals at that moment, can prevent problems, as
the following quotations suggest.

I have learned the signs of going too far and have a good idea of how and when I need
to brake to prevent a large outbreak. I consider this a huge improvement compared to
how I started.

I've become more aware of the warning signals my body sends me when I do too much
and I'm learning to stop as soon as symptoms appear - even if it's just lying down for a
few minutes.
Be assertive

You have to defend yourself because this can help you meet your needs, reduce stress
and thus prevent outbreaks.

Communicating clearly when I need medicine, rest, or quiet time and taking time for
these things when I need them [all of this] helps me prevent an outbreak.

It is extremely important to me that I communicate my needs and limits to others. I find

that my real friends accept this and will often remind me to rest or stop what we are
doing.

Take advantage of solitude

Time alone can reduce stress and recharge your batteries.

Being alone helps me put everything in balance. I have found that it is as necessary and
fulfilling as rest. I begin to know myself, myself and listen to what my body tells me
about what I need at this moment.

Pursue pleasure

Chronic illness often means pain and frustration. Try to have activities in your life that
provide pleasure because they reduce frustration and it will be easier to live within your
limits. If you pace yourself, you're less likely to overdo it.

I try to do a lot of enjoyable things, little by little, to keep the endorphins flowing.

I have to make time for pleasure or pleasant activities. This is crucial to feeling well. I
nurture my creative side, because it gives me a lot of pleasure and validation in myself.
Enjoy the beauty of nature, as there is so much around me.

References

Matallana, Lynne. The Complete Idiot's Guide to Fibromyalgia . New York: Penguin,
2005.

12: Exercise, Nutrition and Chemical

Sensitivity
The previous chapters described several strategies for managing symptoms. This
chapter discusses three other approaches: exercise, dietary changes, and avoiding
substances that trigger allergic reactions.
Exercise

Being sick reduces the level of activities and causes deconditioning, fatigue, pain,
stiffness, anxiety and depression. One way to change the direction of the spiral is
exercise. Exercise counteracts all of these factors. It increases physical fitness, reduces
fatigue, pain and stiffness and improves mood.

Exercise is usually an important part of treatment for fibromyalgia and can also be
helpful for CFS patients, although there are some patients for whom exercise probably
does not help and may even cause a flare-up. It may be inappropriate for people with
particularly severe symptoms and is inadvisable when it causes symptoms to flare up
dramatically. Before starting an exercise program, discuss it with your doctor. He/she,
in turn, can refer you to other professionals specialized in exercise, such as physical or
occupational therapists.

A comprehensive fitness program includes three types of exercises:

1. Flexibility: Stretching reduces pain and stiffness and keeps joints and muscles
flexible. It is often good to start your exercise routine with stretching and it can
also be used as a warm-up before other forms of exercise. Other types of
flexibility exercises include yoga and Tai Chi.
2. Strengthening : These exercises increase muscle strength, thus facilitating your
daily activities. Strength exercises are often done with weights, but you can start
with simple movements, such as standing up from a chair or moving your arms.
3. Resistance : Often called "aerobic exercise," resistance work strengthens the
heart and lungs. This form of exercise helps reduce fatigue and pain because it
gives you more vigor; They also improve sleep and mood. Examples include
walking, cycling, and water exercises.

Exercises: CFS vs. Fibromyalgia

The type and amount of exercises you do should be different depending on the severity
of your illness and whether you suffer from CFS or fibromyalgia.

For most CFS patients, it is easy for exercise to trigger an intensification of symptoms,
so patients should focus on avoiding post-exertional fatigue (excessive tiredness after
activity). Any physical activity should be considered exercise. Even if you don't have a
formal exercise program, you are exercising when you do things like clean the house, do
the laundry, cook, shop, or garden. For some people, going to the grocery store is a
day's exercise. Since many CFS patients have a tight limit on the number of activities
they can do without increasing their symptoms, exercising may require having to cancel
or reschedule certain other activities.

Exercise programs for CFS often focus on flexibility and empowerment. Resistance
exercises may be helpful, but only for higher-functioning patients. Pacing should also
be applied during exercise, so that a period of activity alternates with rest. For some
people the effort time can only be one minute, followed by several minutes of rest.

If the greatest danger for patients with CFS is post-exertional discomfort, that for
patients with fibromyalgia is immobility. If you have fibromyalgia, fellow patient and
author Stacie Bigelow suggests thinking about a concrete mixer. The contents of the
truck remain soft, but as long as it moves continuously. If the drum stops rotating, the
cement hardens and becomes concrete. She and other exercise experts for fibromyalgia
patients recommend two to five minutes of movement after 20 to 30 minutes of sitting.
Ms. Bigelow suggests that an exercise program for fibromyalgia begin with an increase
in daily activity, things like showering, making the bed, preparing meals, shopping, and
caring for children.

When paying attention to daily activities, you also have to think about posture and the
way you move, and the timing of activities. As I indicated in the chapter on treatment
options, one way to control pain is through good posture and body mechanics.
Likewise, alternating periods of activity with rest breaks reduces the probability of pain
exacerbation.

A formal exercise program for fibromyalgia can begin with stretching. Just like being
active, stretching increases flexibility, thereby reducing pain and stiffness. A stretching
routine can be done almost every day of the week. (For samples of flexibility exercises,
see Chapter 4 of Bigelow's book and Chapter 6 of "The Arthritis Foundation's Guide to
Good Living with Fibromyalgia." ) An exercise program for fibromyalgia typically also
includes a resistance component, such as walking or exercises in the pool. You can use
one or more types of exercise and usually do strengthening most days of the week.
Finally, an FM exercise routine should include strength training two to three times a
week. (For samples of potentiation exercises, see "The Arthritis Foundation's Guide to
Good Living with Fibromyalgia" and Chapter 12 of "The Arthritis Helpbook" .)

Many fibromyalgia patients participate in water exercise classes. One example is the
Arthritis Foundation's aquatic program, offered in many cities across the United States.
For information, see http://www.arthritis.org/ , the Arthritis Foundation website.

Exercise guide

When creating your exercise program, consider the following general guidelines.

1 . Individualize your program : Exercise programs for CFS and fibromyalgia should
be tailored to each patient's unique situation. The type, duration and intensity of exercise
will depend on the severity of your illness and also differs depending on whether you
have CFS or FM. Your exercise tolerance may depend on the time of day. As I
mentioned earlier in the book, most patients have better and worse times throughout the
day. Your ability to exercise can vary substantially depending on when you exercise.

2. Set realistic goals : Exercise has a different objective for patients with CFS and FM
than for healthy people. Healthy people can train for an event, such as a marathon, or
work to sculpt their body. Goals can be set and forced. This approach is likely to worsen
symptoms for people with CFS and fibromyalgia. An appropriate goal of exercise for
CFS would be to improve physical fitness enough to make daily activities easier. For
fibromyalgia, it is realistic to use exercise to reduce stiffness and pain.

3. Start low and go slowly : You need to start by finding a safe level for exercise, one
that doesn't intensify your symptoms. The goal is to have a sustainable level of effort
that you can do several times a week. To improve your flexibility, try stretching, yoga,
or Tai Chi. For strength training, use light weights or isometric and isotonic exercises.
(Isometric exercise involves strengthening the muscles without moving the joints.
Isotonic exercise involves joint movement) In the resistance category you can try a
gentle form of aerobic exercise, such as walking or exercises in a pool. For some
people, starting slow may mean as little as one or two minutes of exercises per session.

It is usually advisable that you do the same duration for a considerable period of time
and that you very gradually increase the duration, as tolerated by the body. You could
spread your total exercise time over a few shorter sessions, with an eventual total goal
of about half an hour a day. Maybe you need six months or a year to accumulate a total
of 30 minutes; For some patients, 30 minutes is an unattainable goal.

4. Monitor yourself : The intensity of exercise for most patients should be in the range
4 to 5, where 1 is rest and 10 is the most effort you can imagine. A standard often used
to determine whether you have the appropriate level of aerobic exercise is the talk test:
you should be able to carry on a conversation while exercising. If you are sore for
several hours after finishing, try experimenting with the intensity and duration of your
program. You may be able to reduce the pain by trying heat or massage before exercise
and cold after. Heat in the form of heat packs or hot water (a shower or bath) increases
blood flow; Cold in the form of ice packs or bags of frozen vegetables reduces
inflammation.

To evaluate your program and resolve problems, try to keep a record of your exercises
and their consequences. You could write down the time and duration of the exercise, its
intensity, and your level of symptoms before, during, after, and the next day. Write
down your symptoms on a ten-point scale or with letters such as B, M, and A for low,
medium, and high. A diary can help you see the effects of exercise because some can be
delayed by hours or even a day.

Stick with it: Long-term exercise

The benefits of exercise are greater for those who do it regularly. Here are some ideas
for how to stick with an exercise program.

1 . Do exercises that you enjoy : The chance that you will continue with an exercise
program is much greater if you enjoy what you do, which is why you have to find a
modality that you enjoy. Make your time more enjoyable by listening to music or
distracting yourself in other ways.

2 . Finding the right environment : If you're having trouble getting motivated to

exercise alone, do it with a friend or sign up for a class. Making a commitment and
socializing while you exercise are two good ways to increase the likelihood that you
will continue.

3. Keep records : Consider motivating yourself by having records. Setting goals and
measuring progress often helps you stay on track with your program. Likewise, keeping
an exercise diary is a way to stay accountable.
Nutrition

Food is fuel for the body, but CFS and fibromyalgia patients face several challenges to
good nutrition.

First, most patients experience an intolerance to alcohol and many are sensitive to
caffeine and other stimulants, sweeteners (such as sugar, corn syrup, fructose, aspartate
and saccharin), food additives (such as MSG, preservatives, colorings). and artificial
flavors) and tobacco. Cutting out or eliminating these substances can reduce symptoms
and mood swings and also improve sleep.

Second, due to energy limitations, lack of appetite, or severity of symptoms, some

patients have trouble spending enough time preparing good meals. Some possible
solutions include:

 Get help with food preparation : Ask family members to help you or take
responsibility for the preparation or share the preparation with friends.
 Prepare meals in advance : When you feel better, cook several days' worth of
meals or freeze meals.
 Use frozen meals : There are many nutritious frozen meals available.
 Buy food online or by phone: Replace visits to the grocery store with home
delivery orders from home.
 Be kind to your body in the kitchen : Prepare meals according to your body's
needs, taking breaks to rest, using a stool, limiting repetitive movements, using
good posture and avoiding preparing time-consuming dishes.

Third, about one-third of CFS and fibromyalgia patients experience food sensitivities or
allergies or have difficulty absorbing nutrients. Negative reactions include
gastrointestinal symptoms (such as heartburn, gas, nausea, diarrhea, and constipation),
as well as other symptoms such as headache, muscle pain, pulse changes, and fatigue.

Unfortunately there is no common food group that susceptible CFS and FM patients are
sensitive to. One person may respond poorly to dairy, while another has to avoid wheat.
Some common sources of food allergies include dairy, eggs, soy, wheat, and corn.
There are more, like tomatoes, potatoes and other members of the nightshade family;
fruit; foods with many spices; gas-producing vegetables, such as onion, cabbage, and
broccoli; raw foods and nuts.

There are two major treatments for food sensitivities and allergies: avoidance and
rotation diet. The first step for both treatments is the same: identify the foods that
trigger allergic reactions. To do this you have to make a list of the foods that you think
may cause problems, eliminate them from your diet and then reintroduce them one after
another. Since reactions may take one to several days to develop, you will need to keep
track of what you eat and the symptoms you experience for several days.

If foods cause strong reactions, such as diarrhea, nausea, headache or hives, you will
probably have to eliminate them completely from your diet. Often eliminating just a few
foods can dramatically improve symptoms. You may also be able to tolerate a food if
you only eat it occasionally. This is often called the rotation diet. After eating a food
you wait about four to seven days before eating it again.
As with so many things regarding CFS and fibromyalgia, reactions to foods are very
individual, which is why the approach to food must be individualized. There is no off-
the-shelf, standard “CFS diet” or “FM diet.” Here is a general guide.

1. Experiment: About two-thirds of CFS and FM patients do not have food allergies
and can focus on eating a balanced diet and avoiding substances such as alcohol and
tobacco. The others will have to find out the substances that cause their symptoms.
Since reactions to foods vary from person to person, this third of people have to
experiment to determine which foods create reactions and then test to find out if they
need to reduce or eliminate them from their diet.

2. Listen to your body : If a food or substance makes you feel worse, don't eat it.
Sensitivities vary tremendously; You may not tolerate "good foods" like certain fruits
and vegetables.

3. Eat sensibly : As far as your sensitivities allow, try to eat balanced. There is more
danger in trying fad diets than eating a standard diet generally recommended for all
adults, one that includes a variety of foods from different food groups, focusing on
fruits, vegetables, whole grains, and moderate fat.

4. Avoid certain foods and substances : Almost all CFS and FM patients are intolerant
to alcohol and stimulants such as caffeine in coffee and tea. Many are sensitive to
sweeteners and food additives. Eliminating or reducing these products makes sense for
most patients.

5. Consider other causes of eating problems : Many CFS and FM patients also suffer
from Irritable Bowel Syndrome (IBS); fungal infections such as candida; celiac disease,
which causes a strong allergic reaction to wheat and other grains; and lactose
intolerance, which is the inability to digest the sugar in milk. Find out if one or all of
your food sensitivities may be caused by these other illnesses.

Chemical sensitivities

Patients with CFS and FM also often experience allergic reactions to substances other
than food. The range of reactions varies greatly among patients, from mild annoyance to
serious threat. Those on the extreme end of the spectrum may be homebound.

Sensitivities to fungi, dust mites and grasses are common. Patients also react to scented
products, cigarette smoke, household chemicals, automobile diesel exhaust and fumes,
glues, dyes and dyes. Symptoms include headache, dizziness, weakness and nausea.
(Because many patients are chemically sensitive, most CFS and FM support groups ask
people to go "perfume-free.")

The most useful management strategy is avoidance. This includes removing offending
substances from the home and limiting exposure to them when outside the home. If you
think you may be chemically sensitive, check the products in your kitchen, bathroom,
and laundry room, such as cleaners, soaps, detergents, pesticides, and personal care
products, such as deodorants, shampoos, toothpaste, lotions, and perfumes. There is
more on this in Chapters 8 and 9 of Verrillo and Gellman's book and the discussion of
designing a healthy environment in Friedberg's book.
Translator's note:

On the following website there is information in Spanish about Idiopathic Chemical

Intolerance: http://www.institutferran.org/intolerancia_quimica.htm

On the blog http://www.vivirconsensibilidad.blogspot.com/

References

Arthritis Foundation. The Arthritis Foundation's Guide to Good Living with

Fibromyalgia . Atlanta : Arthritis Foundation, 2001.

Bigelow, Stacie. Fibromyalgia: Simple Relief through Movement . New York : Wiley,
2000.

Friedberg, Fred. Coping with Chronic Fatigue Syndrome . Oakland, New Harbinger,
1995.

Lorig, Kate and James Fries. The Arthritis Helpbook . Cambridge, Mass: Perseus
Books, 2000.

Verrillo, Erica and Lauren Gellman. Chronic Fatigue Syndrome: A Treatment Guide .
New York, St. Martin's, 1997

13: Control stress

Stress can be a challenge for anyone, but it can be doubly difficult for people with
Chronic Fatigue Syndrome or fibromyalgia. First, a chronic illness adds new stressors to
the usual challenges of daily life. New stressors include symptom discomfort, isolation,
economic pressure, strained relationships, and uncertainty about the future. Second,
CFS and fibromyalgia are very stress-sensitive diseases. They reprogram ("reset") our
"stress thermostat" so that the effects of a certain level of stress are greater than they
would be for a healthy person. In short, your stress factors multiply because you are
sick, and you are more vulnerable to the effects of stress.

But stress, like other aspects of your illnesses, can be managed. By using stress
management techniques, such as those described in this chapter, you can learn how to
interrupt the cycle in which symptoms and stress reinforce each other.

Managing stress: two approaches

To respond to stress there are two important approaches that can be useful: stress
reduction and stress avoidance. The first involves re-training yourself, learning how to
respond differently to stressors so that they don't have the same effect as in the past. The
second approach is preventive, taking measures to avoid stressful circumstances.

Because stress is so pervasive in a chronic illness, I recommend that you consider using
several techniques to combat it. Here's how three students in our program responded
when asked about how they manage stress.
I do a variety of things to manage stress, such as deep breathing, listening to relaxation
tapes, getting regular massages, walking my dog, and writing in my journal.

My ways to manage stress are: meditate daily, go to bed at a scheduled time each night,
make our home a place of emotional welcome for my husband, participate in pleasant
activities, and avoid unwanted situations that leave me without energy.

To reduce stress I use stretching and yoga; relaxing activities such as spending time in
our Jacuzzi or on the garden swing; spiritual activities such as praying and studying the
Bible; and enjoyable activities, both mental and physical, such as reading, movies,
playing with the grandchildren, playing with the dog, and spending quality time with
my husband.

Students in our groups place a lot of emphasis on stress and its management. For
example, they may describe a change in their work situation as a stress reduction
measure. These changes included moving from full-time work to part-time or a less
demanding position, working from home, adopting a flexible schedule, and retiring
early. They also cite pacing strategies such as reducing activities, learning to say "no,"
resting daily, and using routine. Other techniques include being tidy (for example,
reorganizing the kitchen or getting rid of unused possessions), limiting exposure to the
media, limiting contact with certain people, avoiding crowds, getting help with
housework, and doing mental adjustments (such as letting go of old expectations). In
short, they try to identify the sources of stress in their lives and then develop strategies
to reduce or eliminate the stress.

Stress reduction

Often, how we view and react to a stressor determines the amount of stress we
experience. For example, you worry because your symptoms have increased. You may
tense your muscles in response. Muscle tension can create pain, sap energy and cause
fatigue. If you learn to relax, you can reduce muscle tension and soften the symptoms.
This is an example of how to reduce the impact of stressors by changing your response.
The discussion below describes seven different ways to reduce stress.

Relaxation

If we get stressed when faced with a challenge, we often respond with a fight-or-flight
reaction. The adrenaline flows and we feel charged. If the challenge is brief, the initial
reaction is followed by relaxation. But, when you are under constant threat, which is
possible if you are always in pain, your body remains in a state of tension. If, through
relaxation, you can let it go, you counteract the effects of the fight or flight response.

Physically relaxing activities counteract both the physical and emotional aspects of
stress. Through relaxation you can reduce both muscle tension and anxiety. Relaxation
is also very helpful in controlling pain. Combining rest with a relaxation or meditation
procedure can be an even more effective way to reduce stress.

You will find step-by-step instructions for various relaxation procedures later in the
chapter, in the section called "Relaxation Techniques," but other less formal approaches
can also help. These include exercises, paying attention to breathing, hot baths and
jacuzzis, massage and acupuncture, rest, and listening to relaxation tapes.

To reduce stress I use deep relaxation through therapeutic massage and healing
bodywork, long soaks in the jacuzzi or steam room, exercises/movements such as long,
deep yoga stretches and Tai Chi. Sometimes it helps better if I do something more
vigorous for a while, like a brisk walk or jumping on my mini-trampoline.

I have found that slow breathing techniques help me reduce stress. If I see that I am
going to be late for an appointment, I slow down and take a deep breath to reduce the
stress I feel. I tell myself that it's okay if I'm late, the doctor will still be there and 9
times out of 10 he's the one who's late.

Solve problems

Taking practical steps to improve your situation can also help reduce anxiety and worry.
A member of one of our groups provided a good example. He suffered from frequent
and severe brain fog and said he had to go to the emergency room after taking his
medications three times in one day. When he got home, he was afraid that because of
his brain fog he would make the same mistake again. He asked the group for
suggestions. Several class members gave ideas for not getting confused with their
medications. The patient wrote a few days later to say that she had purchased a pill box
with compartments for each day of the week and was much less worried about repeating
her mistake because she had a system she trusted.

Here's what some other students said about solving problems.

I try to have a practical plan for the things I think I can change. Sometimes problems
seem overwhelming, but the advice to take on one thing at a time really works.

I've spent a lot of time analyzing all my activities, from the amount of time I spent
somewhere to how I minimize pain by doing housework. Since doing this review I have
tried many different gadgets that have been very useful, such as a book stand for the
newspaper.

Positive experiences

Doing pleasant things reduces stress. Positive experiences counteract the idea that an
illness is only suffering. Pleasurable activities also reduce the frustration of being sick
and distract you from your symptoms. Here are some quotes that attest to the healing
power of pleasurable activities.

At the beginning of being sick I felt very guilty for not being productive and I thought
that I didn't deserve to have a good time. Later I thought that since my stress was great,
something to relieve my stress had to be great too. What I ultimately learned was that
fun was really key to helping me reduce my stress and that fun can come in many forms,
big and small.
Planning positive experiences helps reduce my stress. Going out with my husband and
children, watching a favorite show on TV in the evening, and taking trips to nearby
cities or state parks [are] particularly stress-reducing.

Enjoyable activities are so important to me because they show me that I can have a good
life despite having CFS, things like leisure, going out with friends, having friends come
over for the night or going shopping.

Here are seven types of positive experiences that can help reduce stress.

1. Pleasant activities . Doing things you enjoy can distract you from stress and reduce
your worry about problems. Examples include watching a movie, spending time in
nature, listening to or playing music, and reading.

2. Exercise and movement . Exercise is a natural stress reducer because it causes your
body to produce endorphins and other body calming products. A similar effect can be
obtained with other forms of movement. If you're worried, just getting up and moving
can help break the spell. As Edward Hallowell says, "If you think about the worried
look, you usually see a person who is at rest and motionless... Movement can melt
worry." Exercise doesn't work for everyone with our illnesses but, as noted in Chapter
12, it often helps people with fibromyalgia and can help people with CFS.

3. Have a journal ("Journaling") . Writing can be useful as a stress reducer. It may be

helpful for you to write down what is worrying you, because it allows you to vent
frustration and lessen worry, as demonstrated in the quotes below.

Keeping a journal has helped me, because simply writing about what I'm worried about
usually allows me to let it go, instead of worrying about it.

What has helped me the most is recording the things that stress me out in a stress
journal. It seems that identifying and writing them down not only helps me with my
stress level, but by identifying them I am able to pinpoint the problem with precision.
This keeps the worries that gnaw at my mind to a minimum.

Another use of journaling is to help you change perspectives on your life. Some
students have told us that it was very helpful for them to have a journal in which to
write down positive daily events. Over time they saw that their mental attitude made
their illness and their life changed in the positive direction. There is a template for
gratitude journaling in Sarah Ban Breathnach's book " Simple Abundance Journal of
Gratitude" .

4. Speak and be heard . Not surprisingly, in one survey, talking to a friend ranked
number one for combating worry. Talking to someone you trust provides comfort, and
feeling connected helps dispel worries. Edward Hallowell says that studies have shown
that talking to another person changes what happens in your brain on a physical level.

5. Music, art and other absorbing activities . Listening to or playing music or doing
other artistic activities are good stress reducers. The same can be said for reading a good
book or watching a fascinating movie. The key is to find an activity in which you can
become absorbed. If you immerse yourself, you interrupt the cycle of worry, distract
yourself from your symptoms, and experience some relaxing pleasure.

I have reawakened an old interest in artistic pursuits. Previously I liked music, then
knitting and now calligraphy and rubber stamps; I find tremendous pleasure and well-
being in it.

6. Laughter and humor . This is another good stress reducer. Watching a funny movie
or laughing with friends can be a great release. Like exercise, laughter promotes the
production of endorphins. Research suggests it can boost the immune system,
counteract depression and even provide a substitute for aerobic exercise. A few short
bursts of laughter can double your heart rate for two to five minutes. As a natural stress
reliever, laughter produces relaxation for up to 45 minutes.

7. Loneliness . For some people it can be helpful to have some alone time.

I notice that a walk helps me if I can do it outside and alone. If I can't, it can also feel
great to lie down in my bedroom because it is very calming (wise green walls, wooden
floor, lit candles). I'm an avid reader so reading a little fiction for pleasure helps relax
me.

I spend a lot of time doing quiet, relaxing activities, like watching TV, reading, knitting,
etc. If one day I can't do any of these activities, I find myself extremely tense, stressed
and emotional.

Mental adjustments

Your thoughts can be another source of stress. For example, you may have unrealistic
expectations of yourself. Even if your Energy Limit is very small, you may think that,
as a "good mother" or "good wife," you should have the house as it was before you got
sick. If this is your case, you can reduce suffering if you change your expectations. As
one person in our program says, "I'm learning to recognize that in the end it's not really
that important whether the floors are spotless or whether I get all my laundry done on
Saturdays." By being aware of your standards and changing them, you will reduce stress
and this will help prevent you from going overboard. It can also help you change your
expectations of how others see you.

I stopped expecting people to respond to me the way I think they “should” respond. For
example, I stopped expecting people to understand my illness. So, without expectations,
I feel less resentment which results in less stress in my life.

Another area for mental adjustments concerns the thoughts that are generated when bad
things happen. For example, an increase in symptoms may trigger thoughts such as "I'm
not getting anything done," "I'll never get better," or "It's hopeless." Negative thoughts
like these can make you feel anxious, sad, angry, and hopeless. The thoughts and stress
they create can make your symptoms worse and trigger another round of negative
thoughts. The circle can be very demoralizing, causing you to have an overly
pessimistic view of your situation and making it difficult to motivate yourself to do
things that make you feel better. But you can learn how to recognize and change
habitual negative thoughts and become more realistic and positive. See the "Changing
Your Thoughts" section at the end of this chapter.

Assertiveness

Speaking up for yourself is a stress reducer. Part of assertiveness is setting limits toward
others. Teach your family and friends to respect your needs regarding your rest time.
Clarify your limits, such as how long to talk on the phone or how long to stay at a party.
Explain that there are certain things you can no longer do, such as lifting heavy objects
or staying out late. By saying "no" you avoid doing things that would intensify your
symptoms. Also, learn to delegate and ask for help. Others often feel as helpless as you
do about your illness. If you ask them for help, you allow them to somewhat replace a
feeling of helplessness with a feeling of accomplishment.

I have stopped trying to be everyone's friend and doing everything they asked of me.
Now I have new, close friends that I can count on and who can count on me.

Support

Being sick at the same time stresses us and isolates us. Having people in your life who
understand and respect you is a balm for your soul. The mere fact that you are heard and
that you feel connected to others is therapeutic. What's more, talking to another person
can help you clarify your situation or the answer they give you may allow you to see
your life in a different and more constructive way. Support like this can be received
from family members, friends, other patients or therapists. Support also means practical
assistance, which could include things like shopping, cooking, paying bills, or cleaning
the house. There are more ideas about creating a support network in Chapter 15.

Medicines

Prescription medications can be helpful as part of a stress management plan. Here is

what one student says:

I have been taking Zoloft (Sertraline) for two years. For a long time I resisted the
temptation, but now I'm really sorry I waited so long. It has helped me soften my
reactions to daily stress and evened out my mood. Medications are not for everyone, but
I have learned to keep an open mind and treat all aspects of my life and not depend on
just one approach.

Stress avoidance

Stress avoidance is preventive; Use self-observation to learn how stress affects you so
you can then take steps to avoid stressful circumstances. For example, you may notice
that when you reach your limit, any higher activity would intensify your symptoms. In
such circumstances, rest can reduce stress on your body. Scheduled rest can be an
effective stress avoidance strategy. Having good relationships is like a buffer against
stress. People with supportive relationships have less anxiety and depression.

The overall idea is to ensure that a stress response is not generated by avoiding stressful
situations. Less stress hormones means more time for your body to repair itself. What
people in our groups use most to prevent stress is to avoid stress triggers and use
routines or programs.

Avoid stress triggers

We may have special circumstances in our lives that irritate us. If we can identify these
stress triggers, perhaps we are able to avoid them or reduce their impact. I suggest you
think about three categories of triggers: people, substances, and situations.

For some patients, interactions with certain people cause disabling stress. The responses
they gave included talking to the person, limiting contact, getting professional help, and
ending the relationship.

I have left several difficult relationships. I was amazed at how good I felt and also how
those people didn't even try to get back into the relationship. I guess I wasn't as
indispensable as I thought!

I have cut people out of my life who only irritated me or didn't support me. It was hard
to do, but it has made a big difference in how I feel, especially about myself.

I have managed to free myself from some toxic relationships, people who talk all the
time, people who are very scattered and not very focused, and not on the path of self-
discovery. It has taken me a while to recognize that these types of relationships caused
me so much stress.

Foods, chemicals, and other substances can trigger symptoms. By identifying and
avoiding specific foods or other substances you may be able to avoid flare-ups. For
more, see Chapter 12.

I avoid eating foods to which I am allergic or intolerant and I do not go into smoky
rooms.

Eliminating or at least restricting aspartame and other sweeteners, MSG and caffeine
has helped me stay more balanced.

Speaking of situations, if you are particularly sensitive to lights, noises, large numbers
of people, or if you experience other types of sensory overload, avoiding these
situations can help you manage your symptoms. They could visit you, instead of you
going out. Or you could go to the restaurant or the movie at low hours. Many patients
are selective about their exposure to television and movies and avoid material that is
emotionally arousing and shown with rapidly changing scenes.

Knowing and approving my limits has helped me avoid stressful situations, such as
being with large groups of people or spending too much time in a store with a lot of
fluorescent lights.

To avoid stress I try to avoid the situations that cause it. I only drive when I have no
choice. I avoid large groups of people. I try to avoid arguing with people close to me.
Programs and routines

News is another source of stress. You need more energy to respond to a new situation
than a familiar situation. Since our energy is limited, it is desirable to save it to heal.
One way to do this is to make your life predictable. Some patients do this by
introducing routine: they live their lives according to a schedule. They have been able to
reduce surprises and emotional shocks in their lives, and thus reduced their stress.
Knowing what to expect has reduced the pressure they were under. Any measure that
increases predictability implies that stress decreases.

Until two years ago there was very little routine in my life and the result was frequent
and long outbreaks. My life was one big roller coaster. Now that I have a regular
schedule, I can plan much better. Routine may sound boring, but for me it is a necessity.

Having a regular routine is very helpful for me because having a predictable life has
been the most effective way for me to reduce stress. A life with few surprises has
reduced the pressure I was under and given my body more time to heal.

Many of the strategies described in the pacing chapter are also effective stress reducers.
Scheduled activity based on priorities, resting regularly, scheduling activities during the
best times of your day, and staying within your known limits all help manage stress.

I have a fairly routine lifestyle, specific activities sprinkled throughout the week, both
related to health and pleasure, I allow myself a lot of time to rest and relax at home, but
I also allow myself time to socialize.

I plan the activities that require the most energy (physical, emotional or mental) during
my good hours of the day.

I have found that I can avoid a lot of stress if I know my limits. Planning too many
activities in a day or scheduling them too close together are big stress triggers, which is
why I try to prevent its activation by limiting the number of activities in a day and
giving myself a lot of time between two activities.

Relaxation techniques

The procedures described in this section illustrate several different relaxation

approaches. They are useful for stress reduction and pain management. Since everyone
is different, some techniques work well for one person and other techniques work better
for another. In particular, techniques that use imagery seem useful to some people, but
not to others. Try several techniques to find out which one works for you. It is also
possible that a particular technique works for a season and then becomes ineffective. If
this happens, try something else.

It usually takes several weeks of practice to develop skills in using a technique, so try to
give yourself a little time before expecting results. To be fair you should practice four or
five times a week, setting aside ten to 20 minutes per session and choosing a time
during which you will not be disturbed. Learning to concentrate is a common problem
when practicing relaxation. The mind tends to escape and for this reason you have to be
patient. It's ironic that you have to work to learn to relax.
Nowadays there are many relaxation and meditation tapes. Some have step-by-step
instructions to guide you through the relaxation procedure, while others have relaxing
music or nature sounds. Maybe you want to use this type of tape or you want to record
one with the techniques below. If relaxation makes you feel anxious or unpleasant, try
other stress reduction techniques.

Focus on breathing

When you are under tension and stressed, your breathing becomes shallow or you hold
your breath. Breathing deeply and relaxed can reduce your tension and help you relax.
Here's a way to do it, by focusing your attention on your breathing. You can use this
alone, as a stress reduction technique, or in combination with other practices, such as
those you will find on the following pages.

Sit or lie down in a quiet place where you won't be disturbed for a few minutes. Focus
on your breathing. Take a long, slow breath in through your nose, hold it for a second or
two, and then breathe out through your mouth. The idea is to focus your attention on
your breathing, making it slow and gentle. If you find that your mind has wandered and
you are thinking about something else, simply return your attention to your breathing.
Since you are breathing slowly and easily, you should feel your body relax and a sense
of calm replace anxiety. If you get dizzy, stop the technique and breathe normally.

As soon as you trust this technique, you could use it when you are under tension or
when you notice that you are breathing shallowly. It could help calm you down, for
example, when you're in a traffic jam, in a line, or in a heated argument. The basic
principle is to focus on your breathing to decrease anxious or negative thoughts and to
reduce the adrenaline flowing through your body. Many times, just noticing your
breathing can already reduce your anxiety. Sometimes deep breathing in and slow
breathing out can reduce anxiety, but don't use this technique if it distracts you from the
task at hand, such as driving.

Scan the body

Body scanning is a technique that helps you relax your entire body. He partners with
Jon Kabat-Zinn, director of the Stress Reduction Clinic at the University of
Massachusetts Medical Center. He recommends doing it lying down, but any
comfortable position will do. Start by focusing for a couple of minutes on your breath,
visualizing it entering deeply into your body and then out again.

After several minutes, direct your attention to the toes of one foot, becoming aware of
any sensations you notice there. Don't try to relax your fingers, but rather focus your
attention on that part of your body. Paradoxically this is often enough to make you
relax. If you see that your mind wanders, return your attention to your breathing and
your fingers. After about 20 seconds you shift your attention to the sole of one foot.
Again, don't try to relax it, but simply become aware of any sensations present. Then
you move to the instep of the foot, the ankle and the calf. When the mind wanders, bring
it back to the breath and the part of your body you are focused on.
Gradually cover the entire body, going up one leg to the hip, then the other leg starting
from the toes. Then you go up to the stomach, chest and back, followed by the hands,
arms and shoulders. Finally you concentrate on the neck, jaw, mouth, eyes and skull.

Body scanning has two keys: 1) focus your attention on one part of the body at a time
without consciously trying to relax it, and 2) return your attention to your body when
the mind wanders.

You can also use this technique to fall asleep, because it helps you distract yourself
from your thoughts and worries by keeping your attention on your body.

Progressive relaxation

Another way to relax the body is called progressive relaxation, it is the mirror image of
the body scan. In this procedure you first tense and then relax all the large muscle
groups in your body, from the feet and calves, up to the face and head.

As with the body scan, you start by lying down or getting into another comfortable
position. Then you focus for a while on your breathing, inhaling air through your nose
into your abdomen and letting it out through your mouth. As you breathe out, you
imagine that your muscles are heavy and that your body is sinking to the surface
beneath you.

Then you become aware of your feet and calves. Pull your feet toward your face, then
relax and release tension. Next you continue with thighs and butt, abdomen and chest,
hands and arms and finally the face and head muscles. For each part of your body you
first tense the muscles and then relax them. Now you take a deep breath and feel any
remaining tension flowing out as you breathe out.

Note: Do not use this technique if tensing your muscles would cause a flare-up. Try
another approach. Some patients are not able to relax their muscles after tensing them.

The relaxation response

One technique to create a state of deep rest is the relaxation response, a tool developed
by Dr. Herbert Benson of Harvard. This technique involves keeping your attention on a
point of concentration, usually a word that you repeat silently to yourself, something
like "relax" or "peace." Your mental gadget can also be a sentence, image or feeling.

The key to this technique is to adopt a passive attitude. While you focus on your mental
device, distracting thoughts, images or feelings will appear. Don't worry; It happens to
everyone. When you notice that you have been distracted, you simply return to the point
of your concentration. Some people find that it helps to focus first on your breathing
and then on your mental gadget. No matter what strategy you adopt, you have to use it
every time you discover that your attention has wandered from your point of
concentration. You've successfully triggered your relaxation response if you're in a
pleasant state, like the feeling of being on the beach on a hot day, or the sense of
detached relaxation you feel just before falling asleep.

Follow these steps to trigger the relaxation response.

1. Be comfortable . You have to go to a quiet place where they will not disturb you, get
into a comfortable position and close your eyes. (Better sitting, although it is not
necessary.)

2. Relax the body . Start with the feet and gradually move up to the head, relaxing the
muscles of the body. Your body scan may include your feet, ankles, calves, thighs,
stomach, chest, back, hands, arms, shoulders, neck, jaw, mouth, eyes, and skull.

3. Become aware of breathing . Follow your breathing for a little while. Feel how it
enters your nose and comes out through your mouth.

4. Concentrate on the point of concentration . With each exhalation you have to say the
word you have chosen or concentrate on the symbol or feeling you have selected.

5. Continue for ten or twenty minutes . If you notice that you have become distracted
from your point of concentration, you need to return your attention to your breathing
and your chosen word or phrase. When you finish, you sit quietly for a few minutes.

Relaxation through imagery

For relaxation, imagery can also be used. The technique below, which comes from Dr.
David Spiegel of Stanford, illustrates the principle that it is very difficult to be anxious
while physically relaxed. You can use this technique when you are worried about
something, both to calm yourself down and to work on solving the problem at hand. The
goal, as Spiegel describes, is to help you think constructively about a problem "in a way
that leaves it outside your body." The steps are as follows:

1. Imagine that you are floating . Close your eyes and feel your body floating. You can
imagine floating in a bath, a lake, or in space. The intention is to experience a pleasant
floating sensation of relaxation.

2. Draw an imaginary screen and fill it with a pleasant scene . As you float you imagine
a screen in your mind's eye. It can be a movie, television or computer screen or a piece
of sky. Then you draw on this screen a pleasant scene, a place where you like to be.
Your memories and fantasies of the place will help you feel more comfortable. If you
are just looking for relaxation you can stop here. If you have a specific concern you
want to work on, you continue.

3. Draw your worry on the screen . If you are worried about something, draw something
about it on the imaginary screen. As you do this, remember to allow your body to
continue floating. Even though you are worried, don't let your body get caught up in
your tension. As soon as you start to feel more tense, move your attention away from
worry and reestablish your sense of relaxed floating. You can use your pleasant image
to help you reestablish the feeling of floating.

4. Split the screen in two and put the image of the concern on the left . Then you
imagine a line down the center that divides the screen into two equal parts. Put the
image of what is worrying you on the left side of the screen.
5. Use the right side of the screen to brainstorm solutions . Imagine the right side is the
troubleshooting screen. You have to open yourself to thoughts and ideas without trying
to evaluate or judge them. After reviewing several possible solutions, think about which
one might work best. The combination of maintaining the floating sensation in your
body while observing your worry and the possible solutions on the screen allows you to
face your fears in a relaxed state.

guided imagery

A similar approach is called guided imagery. We use our ability to create scenes in our
minds to distract ourselves from worries and help us relax. This approach usually
consists of three steps.

1. Focus on your breathing . Make yourself comfortable in a quiet place and close your
eyes. Notice your breath, how it enters and leaves the body. Stay focused on your
breathing for a few minutes and feel your tension release.

2. Visualize a relaxing scene . Imagine a screen you can immerse yourself in. It can be
sitting on the beach on a nice summer day, walking in a pine forest or remembering a
place that gives you warm and pleasant feelings. The scene itself is not as important as
the feelings it gives you. It involves all possible senses. The more you use, the more
relaxing the scene will be. If you are at the beach, you watch and listen to the waves
breaking on the sand, you feel the heat of the sun on your face and the wind on your
skin, and you smell the ocean. If you are in a forest, you smell the pine needles, hear the
birds singing and the water bubbling in the stream, and see a soft light coming through
the branches of the trees. The idea is to draw a scene with so much detail that you feel
so comfortable, safe and relaxed that your frustrations and worries fade away and are
replaced by serenity and calm.

3. Return to the site and present tense . After 10 to 15 minutes you gradually shift your
attention back to your body and the present place. When you feel comfortable, open
your eyes.

Change your thoughts

As we mentioned before, our thoughts can be a source of stress. This section offers a
three-step process by which you can gradually alter your thoughts so that they help you
rather than increase your suffering. With this guide you can learn to put your situation
in another framework, so that you can see it in a new, more realistic and less stressful
way.

This approach is based on changing the internal conversations you have with yourself.
We talk to ourselves all the time. Some of the talk is about things outside of us. For
example, when we find something we had lost we may say to ourselves, "Here it is."
Another part of our internal dialogue is about ourselves. It's what we say about
ourselves to ourselves. For example, when we don't find something, we may say, "But
you're stupid; you always lose things."
This self-talk is a common way of responding to experience, often an internal critic that
can be very pessimistic. For example, if you have a flare-up, your inner voice may say
something like, "You'll never get better. "You never get what you try."

It's not easy to observe your self-talk at times like this, because thoughts like these are
common. But your self-talk can have a big effect on your mood and self-esteem.
Unnecessarily negative thoughts make you feel anxious, sad and helpless. These things,
in turn, make it difficult for you to act constructively. Worry about suffering can even
intensify symptoms and cause more negative thoughts. The circle can be very
demoralizing, making it difficult to motivate yourself.

Recognize automatic thoughts

The first step to changing your habitual way of thinking is to recognize it. It's not easy
to do, because our thoughts are automatic, so deeply ingrained that they seem self-
evident. But if you are able to recognize the thoughts, you will be able to distance
yourself a little from them and remove them from their self-evident nature, which is the
first step to transforming your inner critic into a cheerleader.

I will give a general idea of the technique so that you recognize and gradually change
automatic ideas. It is the "Thought Record" that is described in the book "Mind Over
Mood" by Dennis Greenberger and Christine Padesky. Using this form offers a way to
become aware of automatic thoughts and their effects on your mood and behavior.
There are similar techniques in other books, such as Learned Optimism by Martin
Seligman or Feeling Good by David Burns, or you can learn them from psychologists
specializing in cognitive therapy.

To see how this technique works, imagine a patient who goes out for a walk and feels
very tired when she gets home. Feeling depressed and helpless, she wondered what
thoughts were going through her mind at that moment. They were “I will never get
better. Every time I try to do something, it doesn't turn out right." He recorded his
experience in the first three columns of the Thought Log (see below). In column 1 you
wrote a description of the event. In the second column he wrote down his emotions at
the time of the event. And in the third column he wrote the thoughts that went through
his mind when emotions were the strongest.

Thought Log #1

1- 2- 3-
Event Emotions Thoughts
initials

I walked 30 min. Very depressed helpless I will never improve. Every time I try
tired after something, it doesn't turn out well.

The objective of this exercise is to help you distance yourself from your thoughts, to
remove their "taking for obvious" or self-evident character. Since these thoughts are
automatic, they may be hard to recognize and it may take you some time to develop this
skill. To capture your automatic thoughts you have to fill out a Thought Log as soon as
a disturbing event occurs.

Evaluate automatic thoughts

Once your automatic thoughts have been identified, thanks to the registry you evaluate
them to separate the true ones from the distorted and irrational ones. To help you
determine the extent to which your automatic thoughts are valid, ask yourself what the
evidence is for and against them. Use column 4 in the Thought Log for evidence in
favor of your initial thoughts and column 5 for evidence against.

The idea is to stop believing that automatic thoughts are the truth and, instead, look for
evidence, both for and against. By writing down evidence you help yourself distance
yourself from your thoughts and make them less self-evident. By taking a step back, it
will be easier for you to see how your automatic thoughts can ignore facts or select only
the worst aspects of a situation.

Thought Log #2

1- 2- 3- 4- 5-
Event Emotions Thoughts In favor Against
initials

I walked 30 depressed I will never improve. I have frequent Overall I am better

minutes. Very helpless Every time I try breakouts. Exercise than a year ago. Many
tired after something, it doesn't often makes me feel people recover.
turn out well. worse.

Your thoughts in moments of strong emotions can seem irrefutable, so it may help if
you have in mind some questions that you can ask yourself to find evidence that does
not support your thoughts. Between them:

 Do I know situations in which the thought is not completely true all the time?
 If another person had this thought, what would you say?
 When I felt this way in the past, what did I think would make me feel better?
 Is it likely that in five years you will see this situation differently?
 Am I blaming myself for something that is not under my control?

See alternatives

In the last step you have to propose to understand your experience in a new way. What
you write in column 6 of the Thought Log should be either an alternative interpretation
of your experience (if you have rejected the thought) or a balanced thought that
summarizes the valid points for and against (if the evidence was mixed). In any case,
what you write has to be consistent with the evidence you have recorded in columns 4
and 5. At first this process may seem artificial and contrived, but it has a point: you are
training in a new, explanatory, more balanced and realistic style. You are learning to
replace one habitual interpretation of your experiences with another.
Examining what she had written in columns 4 and 5, our patient decided that the
evidence was mixed. He wrote in column 6 a balanced thought that combines evidence
for with evidence against.

Thought Log #3

1- 2- 3- 4- 5- 6-
Event Emotions Think- In favor Against Think-
lies I lie
initials corrected

I walked Depressed I will never I have frequent Global- I have frequent flare-
30 min. helpless improve. breakouts. I'm mentally ups and I don't know
Very tired Every time I Exercise often better than I was if I will recover, but
after try makes me feel a year ago. I have made progress
something, worse. Many people and now have some
it doesn't recover. tools.
turn out while they give me
well. hope.

Realistic thinking, not positive thinking

The process described in this section involves changing deeply embedded habits of
thought. Long-term results can be dramatic, but improvement is gradual, and there may
be some bumps along the way. Becoming aware of negative thoughts can cause a short-
term drop in mood.

This process suggested here does not imply that you replace your negative thoughts
with positive, but inaccurate ones. I'm not suggesting that you adopt something like the
motto "I get better and better every day and in every way." Instead, the goal is to learn
to view your situation accurately but hopefully and retrain your thinking habits in a
more realistic direction.

The way of thinking defended here integrates all the evidence, both positive and
negative, in a balanced way. With this way of understanding your experience you
become aware of the negatives in your life and praise yourself for your successes. This
approach should reduce your stress because it helps you feel better, less anxious and
sad. And at the same time, it should help you manage your illness more effectively.

The value of being realistically positive was well expressed by one of the leaders of our
self-help program, a woman with multiple medical problems, who wrote the following
for her class:

One of the most valuable techniques I use to maintain my positive attitude is to

consciously congratulate myself for every small victory. It can be things as simple as
getting dressed in the morning, or forcing myself to pause during my activities to take a
fifteen-minute preventative break. It may seem like I haven't done much at the end of
the day, but I know how much I've accomplished when I remember all the times I've
been able to sincerely congratulate myself.
References

Benson, Herbert. The Relaxation Response . New York: Morrow, 1975.

Burns, David. Feeling Good . New York: Morrow, 1980.

Greenberger, Dennis and Christine Padesky. Mind Over Mood: Change How You Feel
by Changing the Way You Think . New York: Guilford Press, 1995.

Hallowell, Edward. Worry. New York: Ballantine Books, 1997.

Kabat-Zinn, Jon. Full Catastrophe Living . New York: Dell, 1990.

Seligman, Martin. Learned Optimism . New York: Knopf, 1991.

Spiegel, David. Living Beyond Limits . New York: Times Books, 1993.

14: Manage feelings

Fear, anger, grief and depression are normal reactions to a serious illness. They are an
understandable response when your life takes a complete turn. Consider the effects of
CFS and fibromyalgia:

 Limits : Fatigue, pain, and other symptoms restrict what you can do and
decrease your ability to enjoy life.
 Frustration and Helplessness : Lack of control creates frustration and fuels a
feeling of helplessness.
 Uncertainty : It is often hard to plan each day, and the long-term future can be a
big point of doubt.
 Loss : Apart from losing your health, you may lose your job, friends and
sometimes even family, and you also lose the future you had planned for
yourself.
 Isolation : You may spend long periods of time alone and feel psychologically
isolated because you feel different from others.

Further compounding your challenge, CFS and fibromyalgia often make emotional
reactions stronger than before and harder to control. The technical term is unstable ("
labile") . A student in our program writes "My emotions are much more sensitive than
before. "I cry more easily and my emotional reserve is less." Another says, "Just
recognizing that emotions are stronger as a result of CFS has really helped me. Before
learning this I was quite perplexed as to why I disliked small things so much." I believe
this increased intensity is part of the physical basis of CFS and FM.

The force of emotions can create a vicious cycle. Emotions can intensify symptoms,
which in turn can increase emotions such as worry and depression. The process by
which feelings intensify symptoms occurs even with positive emotions, as suggested by
a comment from another participant in our program who said, "In one of the classes I
cried for the joy of being with people who understood me. Almost immediately I had an
attack of brain fog. The experience has helped me realize that any experience that
releases adrenaline, no matter if positive or negative, worsens my symptoms."

But, as with other aspects of a long illness, feelings can be managed. Some of the
strategies mentioned in previous chapters can be helpful in managing emotions. The
stress reduction techniques described in Chapter 13 may help. Relaxation, for example,
can short-circuit the feedback effect with which symptoms and emotions reinforce each
other. The same chapter explains in general terms how a change in your thoughts can
also be useful. The techniques described there have been proven especially useful in
counteracting the effects of anxiety and depression. Another general approach is to
identify the situations (and sometimes people) that trigger strong emotions and plan in
advance a strategy to respond to them. Often avoiding or minimizing stressful situations
can reduce emotions. For more on this, see the stress avoidance section of the stress
management chapter.

In addition to self-help measures, emotions can be managed with professional help.

Emotions such as depression and anxiety can be caused or intensified by changes in
brain chemistry. In that case, the emotions can be treated with prescription
antidepressants or anxiolytics. Psychotherapy may also be useful to you. Talking to a
professional about the problems triggered by your illness does not imply that "it's all in
your head," but rather that having help and perspective about your situation can help
adjust to the dislocations caused by a serious illness. If you think it might be helpful to
talk to a counselor, look for one who specializes in treating people with long-term
illnesses.

With these general comments about feelings as a background, this chapter talks about
depression, anxiety, and anger. (Overcoming loss is the topic of Chapter 16.)

Depression

Depression is very common in chronic diseases. This should not be surprising given the
effects of the incessant symptoms and the disruptions and uncertainty created by the
disease. What's more, for patients with CFS and fibromyalgia, depression can be part of
the illness, with real physical causes. Prolonged stress can alter the body's biochemistry
and cause depression.

Depression is usually divided into two types: situational (or also called reactive) and
biochemical. Both can occur in people with CFS and fibromyalgia. Situational
depression, meaning depression that occurs in response to a particular set of
circumstances, lends itself to self-management strategies such as those described below.
Biochemical depression is caused by changes in brain chemistry. Self-management
strategies may also be helpful for this type of depression, but treatment typically also
includes medication. If you are deeply depressed by your illness, for example if you
have seriously considered suicide, you need to seek professional help.

You can do many things to improve your situation. If you are depressed you may not
want to try it, but remember that depression feeds on itself. Your attitude becomes a
self-fulfilling prophecy. If you think you can improve, try taking actions, like those
listed below, that will most likely help you.
Rest: Some depression appears to be associated with physical symptoms such as fatigue
and pain. Resting to reduce these symptoms can also improve mood. One student
describes the connection like this: "I can usually tell when I do more than my body can
handle, I start to get depressed, not to mention short-tempered and moody. "If I'm well
rested, I'm much happier."

Reach out to others: Simple human contact is often very calming. Family and friends
can also be important sources of support. Calling a friend or getting together to chat, eat,
or watch a movie together counteract the isolation, worry about problems, and low
mood often associated with chronic illness. Explaining yourself many times can give
you perspective. As one patient said, "I find it very helpful to talk to other people who
are going through the same thing. For me it is important to be able to identify with other
people so as not to feel so alone in this."

Leaving the house: Like contact with others, leaving the house counteracts isolation
and boredom and provides stimulation.

Consider taking medications: Tranquilizers and narcotic analgesics enhance

depression. If you are depressed, it may be partially due to a medication side effect.
Check with your doctor. On the other hand, if the origin of your depression is
biochemical, an antidepressant may help you.

Exercise: Exercise is a natural antidepressant. Relieves tension, reduces stress and

improves mood Most exercises also involve being away from home, thus adding the
benefits of a change of scene. For more on the exercise, see Chapter 12.

Solve problems practically: Taking action to solve a problem lifts spirits and also has
practical benefits. Doing something counteracts the sense of helplessness and replaces it
with a sense of control and power. In the words of a student "I manage emotions better
if I do something instead of suffering passively."

Change your thoughts: Being sick for a long time can lead to a feeling of helplessness.
You can improve your mood if you change your usual way of thinking to a more
positive one. This is explained in the "Changing your thoughts" section in the previous
chapter. To improve your mood you have to look at what is going well and what you
have achieved. Try to reduce the impact of low mood by talking to yourself in a
comforting voice. In the words of a student "When I feel low, I remind myself that life
is a series of mountains and valleys and that even though I am in a valley right now, I
will be back on top of the mountain later."

Do something pleasant: Pleasant activities counteract depression and help create a

good mood. Doing something that can absorb you distracts you from a bad mood and
puts you in contact with positive forces. Such activities may include reading, playing or
listening to music, sitting in the sun, doing puzzles, knitting, being with friends, getting
out in nature, and laughing. One student said, "I use my pleasant activities to reverse my
low mood. "I force myself to put aside my 'to do' list and do something that I know will
put me in a better mood."

Seek help: If you are seriously depressed and suicidal or have been depressed for some
time, seek help now. Call the suicide prevention center, talk to your doctor, see a
psychologist or call a friend. If your problems are less severe, consider going to a
psychotherapist. Look for someone with experience in people with chronic diseases. A
therapist can provide an outside perspective on your situation, help you accept your
illness, and support you in your efforts to get better. If you have tensions in the family
due to the illness, consider marriage or family counseling.

Establish good daily habits: Having daily routines, no matter how you feel, can help
you counteract depression. Your daily amount of activities will depend on the severity
of your illness, and may include things like getting dressed, making your bed, cooking
meals, going for walks, and watching your favorite show on TV. Forcing yourself to do
things, even if you don't feel like it, counteracts the inertia of depression.

Helping others: Getting involved in something bigger than yourself counteracts the
isolation and worry that often accompany illnesses and rebuilds self-esteem. We tend to
feel better if we do something for someone else. Helping others may involve a regular
commitment, such as running a support group, or something as simple as a phone call to
an elderly relative or visiting an old friend.

Manage stress: Controlling stress can help you manage your emotions, because stress
tends to make emotions more intense. Living within your energy margins and managing
the stressors in your life will make emotions more controllable.

Fear, anxiety and panic

Fear and anxiety often accompany chronic illness. These reactions are common in
situations in which we feel the combination of an increase in vulnerability and a
decrease in the feeling of power. Due to our illness we experience a loss of control over
our bodies and our ability to plan and predict. Our illness also brings uncertainty about
the future. We may lack clarity regarding our prognosis and wonder if we will improve
and, if so, how much. We may worry how far we can go and become dependent or
destitute.

Here are eight strategies that often help counteract reactions of fear and worry. For more
tips, see "Fifty Tips on the Management of Worry without Using Medication" in the
book Worry by Edward Hallowell.

Solve problems: Taking action to solve a problem has a double reward. You reduce or
eliminate a practical worry that is bothering you and the process of taking action
reduces the worry.

Practice stress reduction: Learning relaxation and other stress reduction techniques
can help you reduce the intensity of your emotional reactions and, in this way, reduce
the echo effect with which emotions and symptoms amplify each other. Regular stress
reduction practice can also decrease "background worry," the incessant anxiety that
results from long-term stress. The key is relaxation. Remember that it is difficult to be
both worried and relaxed. There are instructions on various relaxation procedures in the
previous chapter.

Change your thoughts: If you have a tendency to think about the worst that can
happen, you could take the necessary steps to avoid that part of the process in which
thoughts increase anxiety. An antidote is to retrain yourself to speak reassuringly when
you're worried, and say things like "I've been there before and I've survived" or "this
probably isn't as bad as it seems." You can also do reality checks, checking your fears
with the facts and asking for feedback from other people. Learn to distinguish between
toxic, unproductive and paralyzing worry, and good worry that helps you in your plan.
Act decisively to stop the first. For more see the section titled "Changing your thoughts"
in the previous chapter.

Connect with other people: Feeling like you are part of something bigger than yourself
counteracts worry. Touch also relieves worry, distracts you from obsessing over
problems, and provides comfort.

Exercise: One of the best treatments for worries is exercise because it relaxes and
distracts. There are ideas about how to integrate exercise into your life when you have
CFS or FM, in Chapter 12.

Pursue pleasure: Reading, music, good conversation and other activities you can
immerse yourself in help change your mood.

Don't worry alone: The act of sharing a worry almost always reduces its size and
emotional weight. Talking about it can help you find solutions and almost always makes
the worry seem less threatening. Putting worry into words moves it from the realm of
imagination into something concrete and manageable. You have to look for people who
can offer support and comfort.

Think about medications: Just as medications can help with depression, some people
find that medications help them improve their anxiety. One medication will not be the
complete solution to anxiety problems, but it can be part of an overall response.

A note on panic

Nearly ten percent of people with CFS experience an especially severe and frightening
form of fear, called panic attacks. They are brief episodes of terror during which a
person may feel as if they are about to die. Symptoms may include chest pain, heart
palpitations, and dizziness. Despite overwhelming fear, people survive, but may live a
life of fear, apprehensive about when the next attack will occur. This type of fear is
treatable. For more look at the books by Edward Hallowell and Martin Seligman listed
in the references at the end of the chapter.

Anger

Anger is another understandable reaction to chronic illness. Being sick is frustrating

because it brings uncertainty and loss of control. The frustrations of the illness range
from not being able to plan daily activities to losing the future you dreamed of.
Additionally, irritability appears to be a symptom of CFS and fibromyalgia. Many
patients see a bad mood as a sign that they are exceeding their energy limit.

Self-management can make anger manageable. The strategies described in previous

chapters, such as pacing and stress management, help reduce the sources of frustration.
For example, with pacing you can stabilize your life, reduce swings between high
symptoms and periods of remission, and reduce irritability. Stress reduction practices
can help you relax, thereby reducing your susceptibility to frustration. In both cases,
techniques used for other purposes can also reduce anger.

Anger can be destructive if it is expressed in a way that alienates people who want to
help you or on whom you depend. One way to respond positively to anger is to create a
situation focused on finding solutions to what worries you. If a relationship frustrates
you, choose a time to talk when you and the other person are calm and not distracted.
Before the conversation, ask yourself what the other person could do to improve the
situation that is causing you anger. Then, when you meet, you explain what's frustrating
you. Perhaps you can diffuse others' anger by telling them that you realize your illness
is frustrating for everyone involved.

Here are six more strategies people in our program use to cope with the frustrations
created by being sick. They focus on finding non-harmful ways to recognize and
express anger.

Talk openly about it: Expressing anger by talking about it with someone who is not the
target of your frustration can release the feeling. As one student said, "The frustration
and anger I felt about getting sick eased considerably since I joined a support group. "I
feel lucky to have found a place to unload, be accepted and feel understood."

Writing: Putting the experience into words can help. Psychologist James Pennebaker
found that people have fewer health problems if they write about traumatic events in
ways that combine factual description and emotional reactions. (See his book Opening
Up and also the article "Writing is Good Medicine" elsewhere on this website.) Giving
verbal form to emotionally strong experiences brings understanding. A related
technique is to write a letter to the person you are angry with, and then tear it up instead
of mailing it.

See things from a new perspective: The amount of anger you feel can be related to
your thoughts, to how you see your situation. Imagine, for example, that you are waiting
at a restaurant for a friend who is half an hour late. You feel irritated. When your friend
arrives she says she was late because she had a car accident. Suddenly, your emotion
changes from anger to worry. Here's what one student said about the effects of seeing
things in a new way:

I have learned to think about things differently. By taming my ideas I have discovered
that much of the anger has disappeared and this feels wonderful. I have now reached a
stage where most of this new way of thinking is automatic.

Plan your response: If you are irritated by comments like "I am convinced that you
would feel better if you tried this new remedy," you could prepare a response so that
these types of comments no longer bother you. In this case you could say something
like "Thanks for the suggestion, but I am under medical care and following a treatment
plan."

Accept and acknowledge feelings: Some people claim to be able to dissipate the
strength of anger and other feelings if they name them. Exercise makes you release the
feeling. As one student said:
What seems to work for me is thinking about the emotion I have. If I'm angry I'll say
'Ah, this is anger.' Then I say 'I accept this anger.' Then I describe the anger. Is it a very
big, latent or small anger? Then I notice how it feels in my body.

Seek professional help: Sometimes talking to a counselor can ease the pressures
created by having a long-term illness. If your anger makes your relationships more
stressful, you might consider seeking professional help. Look for a therapist specialized
in helping people with chronic illnesses.

References

Hallowell, Edward. Worry. New York: Ballantine Books, 1997.

Pennebaker, James. Opening Up: The Healing Power of Confiding in Others . New
York : Avon Books, 1990.

Seligman, Martin. What You Can Change and What You Can't . New York: Fawcett
Columbine, 1993.

15: Improve relationships and build

support
Chronic illness creates stresses for most relationships. Relationships with family,
friends, colleagues and bosses and even with doctors are altered in a way that suggests
that the relational area is another in which the limits imposed by the disease can create
new challenges, both for patients and for others. those around them. This chapter
provides an overview of eight common relationship frustrations that people with CFS
and fibromyalgia face and suggests strategies for coping with them.

Frustrations and solutions

Feeling not understood

Perhaps the most common relational frustration is not feeling understood or believed
when we say we are sick. Because CFS and fibromyalgia are invisible illnesses, we
sometimes have trouble convincing others that we are sick and, in fact, have a serious
illness. Some people may respond with statements like "But you look so good" or "I get
tired too." They may give us well-intentioned but unsolicited advice. In short, getting
others to understand and accept our situation can be quite a challenge.

Part of not feeling understood can be due to poor communication. For ideas on coping
with this frustration, see the section titled "Improvising Communication" later in this
chapter.

In addition to working to improve communication, I suggest that you consider using

different strategies with different people. Some people you see may not understand your
medical situation. For example, if you want to use an electric wheelchair in the
supermarket, it will most likely be enough for you to ask if there is one available
without having to explain your medical situation. If someone asks you to volunteer, it
may be enough for you to say that your situation does not allow you to help at that time.

Friends are in a different category. Patients with CFS and FM sometimes have success
educating others about their illness, but most limit their efforts. If you think that telling
others about your illness would help them be more understanding and encouraging, you
could talk to them or give them something to read. The CFIDS Association of America
has a brochure in English titled "For Those Who Care", available for download from
their website: http://www.cfids.org/ . The Arthritis Foundation has a similar brochure
for fibromyalgia.

Patients who have attempted to educate the people in their lives report that this approach
often requires patience and is not always successful. They have sometimes had positive
responses, but they have also concluded that some people will never understand or have
sympathy. As one person on our program said, "When I first got sick I tried to educate
everyone about CFS. Over time I saw that some relationships were more central to my
life than others. I have also concluded that some people may never understand. I
continue to strive to educate, but I am more selective about who I approach and have
accepted that some may never understand."

With medical professionals the situation is different. It is reasonable to expect your

doctors to believe your illness is real, to know about your illness or to show a
willingness to learn about it, and to treat you with respect. For suggestions on how to
get comprehensive and friendly medical care, see Chapter 5.

Speaking of family, I suggest that you think about overcoming any lack of knowledge
as a long-term project. Some people in our groups have said they have more empathy
for the difficulties of others after asking themselves what they understood about CFS or
FM before they had it. Just as we need time to understand and adapt to our illness,
others need time to understand what we go through and to figure out the implications
for our lives. One person in our program who wanted to educate her husband and
children about CFS gave her husband and adult children the CFIDS Association
pamphlet mentioned above and asked them to read it as their birthday gift. He reported
that, one by one, they developed understanding about their illness and limits, but
completing that process took them a couple of years.

Your situation is different if you have school-age children. If they know you are sick,
but do not understand your illness, they may fear that you will die or blame themselves
for your suffering. If you talk to them about your condition, they could change fears into
facts. Consider using the four tips that Dr. Julie Silver offers. Suggests that: 1) tell your
children the name of your illness; 2) explain something about the disease (for example
that it is not contagious or anyone's fault); 3) describes the expected course of the
disease (it will probably continue, but will be manageable); and 4) give them a general
idea of the effects and reassure them of your commitment to them (you still love them
despite being sick, you will do what you can, even if your level of activities is limited
by the illness).

A final strategy to reduce frustration from not feeling understood is to create new
sources of support in your life, including from other patients. Look at the section at the
end of the chapter called "Building Support."
Pressure to do too much

Due to lack of understanding or for other reasons, others may pressure you to do more
than your body can tolerate. If you feel sick and if you depend on others it is much more
difficult to be assertive. Sometimes we take on the expectations of others and, by doing
too much, we make our situation more difficult. Guilt about not being as active as we
and others want can contribute to us doing too much.

The pressure to do more than is healthy can be changed, both by changing our
expectations for ourselves and by being assertive with others. We often impose
unattainable expectations on ourselves. One approach to overcoming this difficulty is to
define our limits, as described in the chapter on energy levels, and then gradually learn
to live with them, as explained in the chapter on pacing. The adaptations are both
mental and physical. As the “Mental Adjustments” section of Chapter 13 describes, we
need to redefine our own expectations, adapting them to our new limits. We can also
take advantage of activity adjustments, as I described in Chapter 10. These changes can
be doing activities for short periods of time, spreading the activity throughout the entire
week and integrating rest into our lives.

Assertiveness means setting safe limits for yourself and then communicating them to
others. Clarify for yourself and others the consequences of trying to meet your old
expectations: intensification of symptoms and delay in improvement. Try to be as
specific as possible when asking other people for help. You could, for example, ask
someone to do your shopping, make a phone call, or drive you to a doctor's
appointment.

Being assertive can be difficult if you feel dependent or afraid of being abandoned. If
this is your case, it may help if you practice saying your request, saying it to yourself or
someone you trust before making it to the person whose help you need. When you
present your petition it may be helpful to recognize that you understand the person's
situation. You could say something like, "I know that my illness makes your life more
difficult and that some things I say and do can be frustrating."

One student in our groups was able to communicate her limits to her family using a
scale of 1 to 10. In his system, a 1 meant "as good as he was before he got sick" and a 1
meant having to stay in bed all day. When your family asks you to do something or go
somewhere you may respond by saying "No, I can't; today is the 7th." She was able to
verify that this practice helps her family understand her situation and help her cope.
Here are some other ideas about setting boundaries for people in our program.

Setting limits and respecting them are great challenges for me. For years he had the
word "Welcome" tattooed on his forehead, as if it were a doormat.

When friends or family ask me to go to their house to do something, I am honest with

myself and reject these types of invitations when I know I am not around for certain
activities. I just give a simple explanation "it might be too much for me today" or "I'm
not in the state to do it right now" and forget about it. I have found that, for both parties,
it is much better for me to tell the truth instead of accepting the invitation out of feeling
guilty and then suffering for it.
The loss of relationships

With a serious illness you have less energy for everything, including relationships. This
basic fact about CFS and fibromyalgia makes it likely that certain relationships will
change or even end. This is another example of how the limits imposed by the disease
force us to be selective about what we can do and set priorities. I suggest that, when
faced with limits, you do relationship triage: a conscious and deliberate process that
consists of making explicit decisions regarding who to include in your support network,
focusing on the most valuable or necessary relationships and letting them others leave.

A good reason to start evaluating your support network is the fact that CFS and
fibromyalgia can make you more vulnerable to negative or demanding people. The cost
of spending time with these types of people can be great enough to convince you that
relationships with some people should be limited and that relationships with other
people are not worth maintaining.

Think of your relationships as a series of concentric rings. In this scheme, the inner ring
contains the most important people in your life, typically family and closest friends. The
people in the outer ring are the informal acquaintances. In the middle there will be one
or two more circles of people with various levels of importance. You can approach
people from different rings differently, concentrating on those in the inner ring. Outer
ring relationships may be easier to let go of.

The suggested approach is summarized by Dr. David Spiegel of Stanford, who writes
about relationships and chronic illness as follows: “Save your energy and use the illness
as an excuse to disconnect from unwanted social obligations. Simplify relationships that
are necessary but not rewarding, and eliminate those that are neither necessary nor
rewarding."

Here are some examples of selecting people relationships in our program.

I have made my circle of friends much smaller. I have excluded people with whom I
noticed that I had a one-way friendship. It was difficult to let them go because before I
really valued my friendship with them, but I have decided that I have to put myself first,
and this is a new concept for me.

I try to limit contact with hyperactive, negative, skeptical and demanding people.

Some relationships are simply too expensive for me and I have to let them go. If the
person causes me a lot of stress, if they don't try to understand my illness, or simply get
more out of the relationship than they give, I can't continue to put energy into them like
before. If this person is part of the family, I have learned to distance myself as much as
possible, but perhaps it is not possible to cut off completely.

In a time of loss, it is especially helpful to create new relationships, especially with

people who understand what you are going through. Knowing other patients with the
same disease can especially help. For ideas on how to create new relationships and
strengthen old ones, see the section titled "Building Support" later in the chapter.
Another strategy for responding to boundaries and the loss of relationships is to accept
loneliness. Serious illness often forces people to spend much more time alone than
before. Although some find loneliness frightening or boring, illness can give you the
opportunity to develop new solitary interests. Some patients, recognizing that they will
spend less time among people, have taken advantage of the situation as an opportunity
to do things like reading and crafts that they did not have enough time for before. Look,
for example, at JoWynn Johns' article "In Praise of Solitude" on our website. Two other
students in our program had this to say about having more alone time due to illness.

I have really found that I enjoy solitude. I never had time to do the things I liked most. I
was always rushing and when I finally had time to do something, I was too stressed to
enjoy it.

I really enjoy spending a lot of time alone. After many years of activity and socializing,
it is great to have time to enjoy my intellectual interests. I like the luxury of not having
to rush. I read a lot, do simple housework, watch TV and work on my jewelry hobby.
It's great not to have the weight of pressure to be productive on your shoulders.

Feeling untrustworthy

Unpredictability can create relationship problems, because we may not trust ourselves to
commit or we may be forced to cancel dates, often at the last minute. Not being reliable
due to the ups and downs of the disease increases our stress and generates frustration in
others.

You can give a positive answer to this problem by moving forward on two fronts. First,
by applying the strategies discussed in the pacing chapter, you can smooth out the roller
coaster ride of chronic illness because there will be more predictability in your life.
Pacing is based on understanding your limits and living consistently with them. The
power limits chapter offers several ways on how to set them. The pacing chapter shows
how to translate this understanding into a more consistent and predictable lifestyle, thus
reducing the times you have to cancel social commitments.

The second strategy for dealing with unpredictability is open communication. People in
our program have reported success in discussing their situation with family and friends.
They highlight the usefulness of expressing the value you place on relationships, saying
something like, "I enjoy meeting you and would like to maintain our friendship," and
also of preparing others for possible cancellations by saying something along the lines
of, "I have an illness with unpredictable symptoms that It makes it less reliable than I
would like."

Isolation

Having a serious illness often leads to a feeling of isolation. Isolation can be both
physical, because you spend more time alone, and psychological, because you feel
different from other people.

One strategy for responding to isolation is acceptance. If you have moderate or severe
CFS or fibromyalgia, it is very likely that you have fewer social contacts than before
and instead spend more time alone. For ideas on putting loneliness to good use, see the
discussion of loneliness in the section above on the loss of relationships.

On the other hand, you may be able to reduce your feeling of isolation by adjusting the
way you socialize. You may be able to keep some relationships alive by replacing
phone calls or email contact with meeting in person or by adjusting the frequency or
type of in-person meetings. For example, instead of going out yourself, you can ask
people to visit you at home. Or you meet for less time than before, in quieter places or
with fewer people at a time.

One strategy to cope with the feeling of feeling different from others is to build
friendships with other patients, people who understand you because you share a disease.
For suggestions on how to meet patients with CFS and fibromyalgia, see the discussion
of support groups and classes in the section on “Building Support” later in the chapter.

Culpability

Guilt is a common response to having CFS or fibromyalgia. We may feel guilty for not
being able to go to work and therefore depriving our family members of an income, or
for not doing as many things at home as we did before. Living in a society that
emphasizes productivity makes guilt for doing less than before common. It is
appropriate that you view your situation realistically. If you live with other people, your
illness has probably caused a redistribution of responsibilities in your family. But it also
helps if you remember that you didn't choose to be sick and that the illness has imposed
its limits on what you are capable of doing.

Guilt is a response to the losses imposed by illness. (For ideas on working with losses,
see the next chapter.) You can reverse the feeling of guilt in a positive way by using it
as motivation to take good care of yourself. Strategies such as pacing, getting adequate
rest, taking medication, and managing stress can help you improve to contribute viably
at home.

Another positive response to guilt is to work to improve communication within your

family and, if you work, with your boss. For some ideas, look at the "Improving
Communication" section later in this chapter.

Finally you have to think about developing new interests as described in the next
section.

Feeling unnecessary

If we are not as active as before and if others take over our previous roles, we may feel
expendable. Not feeling necessary is part of the experience of grief caused by loss.
Accepting loss and moving forward building a new life is one of the greatest challenges
of long-term illness.

Serious illness brings pain and suffering, but it also offers the opportunity to reevaluate
your life and give it a new role. Some patients come to see their illness as a spiritual
journey. Students in our program often say that, although they did not choose to be sick,
they consider themselves better people because of it. Being sick pushes you to find new
meaning in response to a situation of pain and loss. By developing new self-
understanding, new relationships and new ways of contributing we can respond
positively to the challenge of loss. (For a more in-depth discussion see the "Creating a
New Life" section in the next chapter)

Feeling dependent on others

Our boundaries can feed the fear of becoming dependent on other people. When we no
longer have the energy and independence we once had, we may fear that in the future
we will not be able to take care of ourselves or that the people we depend on will
abandon us.

One response to these fears is to subject them to a reality check. Fibromyalgia is not a
progressive disease and most patients improve. Although it is true that a relatively small
number of CFS patients decline over time, the most common results are improvement or
stable symptoms.

Other people often feel helpless when they think about their illness. If you give them
something specific to do, you are doing them a service while also helping yourself. But
there are also some dangers. If you receive more help than you need, it can reinforce the
feeling of helplessness. And asking too much of a person can also lead to caregiver
burnout. For ideas on how to build sustainable aid, see the “Building Aid” section later
in the chapter.

People are often excited if I ask for help in a clear and practical way. But it's hard for
me to say what I really need without imposing compromised expectations on them.

Improve communication

A serious illness dramatically alters the economic circumstances of most families,

forces radical changes in the division of household tasks, and drastically reduces the
number and scope of activities that the family can do together. If you live in a family, a
relational healing approach might begin by acknowledging to yourself, and then to other
members of your family, how your illness and behavior affects them.

Like patients, family members may also feel isolated and helpless. They may experience
loss because, like you, their dreams may be stagnant because of your illness. And they
may feel abandoned or frustrated by the restrictions in their lives. The unpredictability
of symptoms and mood can affect others, because we may cancel plans at the last
minute or respond with an inappropriate emotion.

One step toward easing tensions in your relationships is to recognize that your illness
creates problems for others. Your symptoms and mood, for example, can make you
unpredictable, and your limits can force others to take on additional responsibilities.
Express your appreciation for their efforts. Recognize that illness can make you
unreliable. As for other people, try to warn them that you may have to cancel within a
short period of time. To help you maintain your relationship with them, tell them that
you value them and that canceling a meeting doesn't mean you don't appreciate them.
Take responsibility for the problems your illness creates for others. For example, if your
illness causes you to be moody, make a list of things you can do to feel better to avoid
inflicting your mood on others. When you feel irritable, perhaps you could listen to
music, go for a walk, or rest for a while.

I have found that it helps a lot if I identify my part in the miscommunication or a

problem.

I make time for my marriage. I found that, even if I'm too tired to do something
together, simply talking to my husband or sitting next to him instead of in another chair
further away, and paying attention to what he wants to say, makes our relationship much
more soft and happy. He, in turn, is much more attentive to my circumstances and
needs.

Poor communication creates frustration in all relationships, no matter if they are family,
friends, co-workers or doctors. Working to improve communication can help improve
understanding, uncover unrealistic expectations, and solve problems cooperatively.
Here are some general suggestions for good communication. (For ideas about working
productively with your doctors, see Chapter 5.)

1. Choose a good time . Choose the time for important conversations, when both you
and the other person are at your best. Find the time when you're not distracted by pain
or brain fog, and when the other person can pay attention too.

2. Be grateful and respectful . Treat the other person with respect, acknowledge their
support and effort. Avoid degrading comments, sarcasm and blaming. Acknowledge
your part in shared problems. A therapeutic approach can start with pointing out your
limits and the things you do that make the other person's life difficult. Show
appreciation for the efforts of others.

3. Practice problem solving . Try to focus on the difficulties caused by your illness and
not on personalizing the problems. Think "Complaints and Solutions." Each person
describes a complaint, and then you both focus on what can be done to fix the problem.
Work only on one or two problems at a time.

4. Check your understanding . From time to time you have to check whether you have
understood the other person's position by repeating it in your own words. Good
communication depends on each person's understanding of the other's point of view.

Build support

Since being sick is so difficult, feeling understood and supported is like a balm for the
soul. Students in our groups report seeking contact with other patients and also valuing
the support and friendship offered by others. Creating new relationships, especially with
other patients or other empaths, can be a powerful antidote to relationship frustration.
Likewise, talking about your illness with friends prevents you from overburdening your
family. And having friends with the same disease can give you the opportunity to help
others, which can increase your self-esteem.
A help network

Speaking of thinking about how to meet your practical and emotional needs, think about
building a network of people who can help you. Author Devin Starlanyl suggests that a
network has to consist of at least five people. Some may offer practical help, such as
shopping, cleaning the house, or giving you a ride. Others can be companions for going
out, like going to a restaurant or to the movies. Still others can offer emotional support
by listening and comforting. In any case it is smart to have a few people to meet these
varied needs, so that one or two people do not feel overwhelmed and burned out.

a confidant

It can be especially helpful to have a confidant, a person you can lean on for emotional
help and an objective view of your life. This person can be your partner, a good friend,
another patient, or a doctor or therapist. I was lucky to have a friend like that. At the
beginning of the month we set aside some time to discuss how I was doing. We each
assessed my condition with the Rating Scale from Chapter 1, and then reviewed my
journals from the previous month. I learned a lot from these conversations, I recognized
patterns that I was not able to detect on my own. Equally important was that these
meetings communicated to me that I was not fighting my illness alone, but that there
was someone who cared about me and wanted to help me get better. And she told me
that the sessions helped her feel useful, counteracting the feeling of helplessness that
people close to people who are seriously ill often feel.

Support groups and classes

Contact with other patients can counteract isolation and make you feel recognized and
supported. That contact can be a way to be understood, comforted and inspired. Support
groups can provide information such as names of local doctors who treat CFS and
fibromyalgia. Groups also offer a way to be helpful, thus counteracting the loss of self-
esteem that often results from illness. And finally, they can offer models for
successfully managing the disease, thereby dispelling fear. Similar experiences are now
available on the Internet, in online chat rooms and message boards.

A word of caution: Although support groups can be very helpful, not all of them
provide a positive experience. Some groups have a negative tone and reinforce the
feeling of victimhood. Some groups are dominated by one or a few people. Other
groups, however, focus on responding positively to the disease and ensure the
participation of all members who want to speak.

I suggest that you evaluate your experiences in groups based on the effects they have on
you. Contact with other patients, especially in a group, can be very powerful. When
such contact is negative, it can reinforce isolation and the feeling of your status as a
victim. In a supportive environment it can be helpful and even healing. Contact with
other patients may sometimes upset you, but this discomfort should be followed by a
change of perspective on your situation and an increase in confidence in your ability to
cope with your illness. A good group is one in which you feel accepted, that gives you
something positive to take home (inspiration or practical advice), and that offers models
for living with your illness successfully.
The CFIDS Association of America maintains a state-by-state list of CFIDS support
groups in the United States. They will send you a free list of groups in your state. (You
can contact them at 800/442-3437 or email your request to SupportGroups@cfids.org .)
The Arthritis Foundation sponsors fibromyalgia support groups in many locations and
offers a directory of their groups on their website: http ://www.arthritis.org/ . Other lists
of fibromyalgia support groups are at ( www.Immunesupport.com/supportgroups/ ), the
Immune Support website and the National Fibromyalgia Association website (
http://www.fmaware.org/ ). You can also find support groups in your local newspaper
or locate them in patient education departments at hospitals, clinics, and medical
centers.

Self-help classes for people with CFS and fibromyalgia include our online course and
the Arthritis Foundation offers the in-person course called Arthritis Self-Help. The latter
includes material for patients with fibromyalgia.

Translator's note: In Spain there are associations in many cities for people with FM
and/or CFS and a national association ( http://www.plataformafibromialgia.org/ ).

Professional Help

Psychotherapy helps some people with CFS and fibromyalgia. An empathetic therapist
can provide a level of caring trust and offer the point of view of a person outside your
situation. If you are interested, look for one specialized in working with people with
chronic illnesses. A local support group is often a good source of leads. Therapy can
help couples, too. It can offer a place where the tensions created by living with a long-
term illness can be addressed.

References

Silver, Julie. "Chronic Pain in the Family," Fibromyalgia Aware : May 2005: 40-42.

Spiegel, David. Living Beyond Limits . New York: Times Books, 1993.

Starlanyl, Devin and Mary Ellen Copeland. Fibromyalgia & Chronic Myofascial Pain:
A Survival Manual . Oakland: New Harbinger, 2001.

16: Beyond loss to a new life

CFS and fibromyalgia usually cause many serious losses. We often experience a loss of
control over our body, loss of friends, and loss of valued activities. We may be forced to
leave our jobs, losing income, company, and challenges. And, we often have to abandon
dreams and, therefore, we lose the future we had envisioned for ourselves. In short, we
experienced the loss of the person we were and the person we hoped to become. Loss is
very pervasive and presents us with two of our greatest challenges: keeping hope alive
and giving new meaning to life when so much has been taken away.

We will look at loss from two perspectives, first we will discuss how to recognize and
digest it and then we will describe how to move beyond the loss to build a new life.
Respond to loss

The emotional reaction to loss is grief. Although grief is usually associated with the
death of a loved one, it can occur after any loss. Responses to loss are sometimes
discussed in terms of the well-known phases of death, described by Elizabeth Kubler-
Ross in her book On Death and Dying . For most people, however, there is no neat and
orderly progression implied by the term phases. Instead, grief is a more individual
process in which a person may experience some, but not necessarily all, of the emotions
described by Kubler-Ross. Likewise, a person may experience some emotions more
than once or may feel two or more at once.

Going through grief can cause a double benefit. Not only will you resolve a key
psychological issue, it could also help you physically. Grief is associated with a
symptomatic flare and therefore resolving feelings of loss can help control symptoms.
The salutary effects of grieving were demonstrated in a recent study of HIV-positive
men who had lost a close friend to AIDS. The study found that these men were able to
make sense of the loss and their risk of dying from AIDS over the next several years
was significantly lower.

Denial and disbelief

A diagnosis of CFS or fibromyalgia often brings relief because it gives a name to the
suffering, but this initial reaction can be accompanied by shock and disbelief.
Diagnosing any of these diseases means you are told you have a condition for which
there is no cure and no consistently effective medical treatments. Common reactions
include ignoring the illness and continuing with a busy life or seeking a cure by going
from doctor to doctor or trying special diets and treatments.

Denial can be an adaptive response that allows you to gradually adjust to all the
differentness and uncertainty that comes with the illness. Denial is a way to keep hope
alive after being told that your life has changed and will probably never be the same.
But if you stay stuck in this reaction you will not be able to realistically face your
situation. Repeated failed attempts at "Miracle Cures" could reinforce a sense of
helplessness and despair. Gaining some control over symptoms and using self-
management strategies, such as pacing and stress reduction, can replace the sense of
helplessness with experiences of control.

Fear and worry

Fear and worry are common reactions to the unpredictability and uncertainty that come
with illness. Not knowing what the future holds, or sometimes even what today will be
like, can be a source of tremendous anxiety. You may feel like your life is out of
control.

Developing a self-management plan can address fear in several ways. First, pacing,
often in combination with medications, can bring stability, thus replacing uncertainty
with predictability. Second, since fear is usually accompanied by muscle tension,
relaxation procedures can break the connection between emotion and physical reaction.
It is difficult to feel anxious while being physically relaxed. Third, since anxiety
typically produces negative thoughts, it may help to try to change the way you talk to
yourself less fearfully and more realistically, as described in Chapter 13. Fourth,
educating yourself about your illness can help you replace worries with facts. For
example, some fears about the future can be alleviated if you know that fibromyalgia is
not a progressive disease and that neither CFS nor FM are fatal. (For more strategies,
see the discussion on anxiety in Chapter 14.)

Anger

Frustration, anger and envy are common reactions to loss and the experience of having
your life changed because of something you do not control. They are honest emotions
that honor the recognition that life has changed for no apparent reason, becoming much
more difficult.

The experience of uncertainty can also trigger frustration. Symptoms wax and wane,
making planning difficult. Having to cancel work and social appointments can create
problems at work and complicate relationships. Bosses, family and friends may have
trouble understanding why you cancel appointments at the last minute or why you can't
consistently go to work.

Feeling anger is normal and can have positive effects if it motivates you to work to
regain control over your life, or if it leads you to channel your energy to help others. But
anger can be destructive if it is expressed in a way that alienates the people who want to
help you or on whom you depend. It is harmful for you to express anger by exploding,
yelling, or being cruel. Resignation is another non-productive response: “Why try? If
nothing works." It's another to act hostile, even if you don't say anything. Refusing to
talk, for example, to your partner.

Gaining control over symptoms, often with medications and lifestyle changes, can
reduce frustration and uncertainty. Pacing strategies, for example, such as taking regular
breaks to rest, help stabilize life with a chronic illness, reduce swings between strong
symptoms and periods of remission, and gain some control over irritability. Resting
before an event can increase the likelihood that you will be able to attend it. A health
diary can allow you to figure out the patterns of your symptoms by showing what makes
your symptoms worse. Likewise, feeling understood can reduce frustration. For ideas on
building support, see the previous chapter.

Culpability

When you look back you could blame yourself for getting sick. You could review your
past to find the mistakes you made that resulted in you getting sick. You might say
things like, "I wish I had taken better care of myself," "I wish I had dealt with stress
better," or "I wish I had paid better attention to my body." The truth is that still no one
knows the cause of either CFS or fibromyalgia. It is likely that there are factors we do
not control, such as genetic susceptibility, that will turn out to play an important role in
both.

We live in a society that sometimes blames people for getting sick. There is a common
idea that we will avoid diseases if we eat correctly, exercise and think the right
thoughts. But the truth is that we are vulnerable, we do not control our genes, and we
are subject to many forces that we do not understand. Don't follow the idea that you
wanted to be sick to teach yourself a lesson. Ideas like this only aggravate the suffering
of chronic illness.

You may also feel guilty for not being able to work or do as much at home as you did in
the past. Living in a society that emphasizes productivity, it is common to feel guilty for
doing less than before. It is appropriate that you view your situation realistically. If you
live with other people, your illness will probably have caused a redistribution of
responsibilities in your family. But it also helps to remember that you did not choose
because you were sick and that the illness has imposed its limits on what you are
capable of doing.

If it motivates you to take better care of yourself from now on than before, guilt can
help you, but it can also be a trap if you consider your illness as a personal failure. No
matter what has happened before, you will only be able to exercise control from now
on, through strategies such as getting adequate rest, exercising, taking medications,
relaxing, getting supportive relationships, accepting a reasonable load of responsibilities
(but no more), continuing taking pleasure in your life and developing new interests.

sadness and depression

Depression and feelings of sadness are common in chronic illness; they are natural
responses to loss, uncertainty, limits, and symptom discomfort. Depression is a response
that decreases additional stress or trauma that shuts you down, allowing time to process
what has already occurred. Depression can also be triggered by a long period of
suffering before receiving the diagnosis. Years of inappropriate or insensitive treatment
can engender a feeling of hopelessness.

Depression usually eases over time. If it persists you will have a feeling of hopelessness
and inertia. There are several strategies that can help. First, self-help techniques, such as
those discussed in previous chapters, can help you move forward, refuting the belief that
everything is hopeless. Second, you can work to reposition your thoughts to make them
more objective and hopeful. For more, see "Changing Your Thoughts" in Chapter 13.
Third, since a considerable number of CFS and fibromyalgia patients suffer from
clinical depression, professional counseling and medications may help.

Acceptance

This complex reaction involves a combination of factors. On the one hand, acceptance
means recognizing that life has changed, perhaps permanently and certainly for a long
period. It means letting go of your past life, but also the future as you had envisioned it.
And it means saying goodbye to the person you were.

On the other hand, acceptance also implies having a good will to build a new life. This
attitude was summed up by Dean Anderson, a recovered CFS patient, who was quoted
in the chapter on pacing as saying that for him the key to recovery was a certain kind of
acceptance. He described it not as resignation, but rather "acceptance of the reality of
the illness and the need to lead a different kind of life, perhaps for the rest of my life."
Acceptance also means finding ways to "be productive and find fulfillment in
unfamiliar and difficult circumstances."
Fibromyalgia patient Joan Buchman gives an overview of a similar change process in
her article "How I Created a Good Life with Fibromyalgia" on our website. (See
references at the end of the chapter). She wrote that, although she did not choose to have
fibromyalgia, she did choose how to live with it. He reduced his symptoms by making
lifestyle changes and developed a satisfying life by "focusing on my many blessings."

CFS patient and writer Floyd Skloot describes his journey toward acceptance in his
memoir In the Shadow of Memory . He writes that, after a struggle, he concluded that
"since I cannot escape my body and the limits it imposes on me, I have to learn to feel at
home within it." He says that, over time, he recognized "possibilities for
transformation." He found inspiration in Robert Frost's description of acceptance: "Take
what you are given and make it your own." Skloot concludes that, even though "It may
seem like I'm shattered,... in many ways I'm better than ever... I feel reborn, hopeful."

All three came to accept the reality of their illness and the need to lead a different type
of life. They found that the key to improvement is the combination of accepting the
illness and disciplining yourself to live with hope within the limits it imposes.

Strategies for moving through grief

What can you do to grieve? In addition to the self-help strategies discussed in the last
section, consider the following:

Use problem solving: Respond to the emotions of chronic illness with problem solving.
By making self-management strategies you will remedy the circumstances that triggered
the emotions.

Have structure in your life: Having a routine provides a sense of stability and
familiarity, counteracting the feelings of disorientation and uncertainty that come with
loss. Writer Gail Cassidy suggests that routine also offers a distraction from loss. He
advises "Don't make large unnecessary changes to your life in times of loss, because
they could in turn add to existing instability and anxiety."

Avoid stress: Having to adjust to the many changes brought by the disease is traumatic.
In a situation where you are already emotionally overloaded it is best to avoid people
and situations that add more stress. Gail Cassidy suggests that you "stay away from
negative people and situations that trigger negative emotions."

Acknowledge losses: Some people report that they found it helpful to make a public
statement of loss. One person in our program wrote a Christmas letter to her friends to
explain why they didn't know about her. The letter said, in part, "I have calmed down
because I have realized that it is very unlikely that I will return to the level of
functioning I had before I became ill and that I will probably have to get used to living a
life with greater limits than before." He reports that writing this letter has helped him
accept his limits and, paradoxically, increased his resolve to improve.

Respond positively to self-compassion: Almost everyone with a chronic illness

occasionally feels sorry for themselves. It is not surprising that we sometimes feel
overwhelmed by emotions, given the losses and stress we experience. Here are four
ways to cope.
 1. Recognizing self-pity is part of a serious illness . Just like symptoms, emotions
come and go. Recognizing that you have self-pity can take some of its power
away. You might say something like, "Oh, there's self-pity again," or "I see I'm
feeling sorry for myself again today." It can also help to say comforting things
like, "I've felt this way before and it's always happened so far, so this probably
won't be the last time either."
2. Rest . Strong emotions are sometimes triggered by fatigue and other symptoms.
In that case you have to rest.
3. Connect with others . Reach out by phone, email, or in person. Sometimes just
being in touch can change your mood. At other times it helps to recognize your
mood.
4. Help others . Instead of focusing on yourself, shift your attention to what you
can do for your family, friends, or other people in your life.

Respond to grief triggers: Grief reactions are often triggered by particular

circumstances such as an anniversary, or by particular people. If your emotions intensify
around the anniversary of your illness or other special dates, try to plan something
positive for these dates. If certain people or situations make you feel anxious or
uncomfortable, consider limiting your exposure to them.

Get support: Other patients can provide you with understanding, support, and
successful coping models. Professional help can give a new perspective to your life and
help you accept the changes that come with the disease.

Recognizing grief is a long process: You may experience grief repeatedly as you go
through the phases of life. Depending on when you got sick, you may feel loss at
several key moments in your life. You may experience grief if you remain single while
your friends are getting married, if you remain childless while others do, if you are
unable to be the parent you hoped to be, or if you are unable to have the job you had
planned.

Create a new life

Although a few patients recover, most people with CFS and fibromyalgia face the
possibility of loss and limitations throughout their lives. Although coming to acceptance
often takes years, most eventually recognize that their old self is gone and replaced by a
more limited self. The losses brought by a long illness create a challenge: who are you if
you can't be the person you were?

CFS patient JoWynn Johns describes how she has recognized and responded to this
challenge "I gradually came to terms with the idea that I might never be able to return to
my old life. As soon as I understood this, I began to let go of my goal of recovery and
replaced it with the idea of restoring my quality of life by building a different kind of
life than I had before CFS....I have created a good life for myself by abandoning the
need to have what that he had before, abandoning the idea of recovery as a return to a
past way of life."

This change usually occurs gradually, but sometimes a single experience brings home
the finality of the loss. A fibromyalgia patient in our program reported that one day she
was talking to a friend about her active life before she became ill and how she had to
accept that she could no longer be as active as before. She described that before she
became ill she did mountaineering, nature walks, caving, cross-country skiing,
backpacking, orienteering, rappelling, and snow camping. The friend responded, "Yes,
this was another life." The patient said her friend's comment was "like a light went on in
my brain. Intellectually I had accepted the loss and grieved, but I felt something was
incomplete - suddenly 'this was another life' gave me a place to put my old life."

Long illnesses trigger a spiritual journey. An illness brings pain, suffering and loss, but
it also provides an opportunity to reassess life and reposition it. Many students in our
program said that, despite not choosing their illness, it has taught them valuable lessons.
They believe, and I agree, that it is possible to live a rewarding life with a long illness,
even if it is a different kind of life.

Reposition: Focus on gains and improvements

There are people in our program who have echoed JoWynn's opinion and who have
found their own ways to give positive meaning to their new life. One approach to
transition is to focus on the gains that came from the illness. A student in our program
wrote "One thing that has helped me is appreciating the positive in my life. "I am
fortunate to have a loving and supportive husband, a fantastic son and wonderful
daughter-in-law, and other friends and family who accept me for who I am and value
our relationship." Others say they prefer the person they are today to the person they
were before they got sick.

The loss of my self, the new normal me is a kinder, gentler, more caring person.

I really like the new me better than the old one. I'm much more pleasant to be around
and I'm generally happier with life.

Others say that today their life is better than before:

I'm happy about some of my losses. As I progress through the autumn of my life, I am
glad to have released many of my old fears, prejudices, and resentments. I have replaced
them with trust, tolerance and love.

In many ways my life is better now than before I became ill. I know what my priorities
are. My social calendar is not loaded with activities, it contains only those that are
important to me. And I'm not as stressed as before... I'm almost thankful I have
fibromyalgia (and the other things related to it) because the positives outweigh the
negatives!

Gratitude

As the quotes above reflect, some people with CFS or FM find that it helps them to look
at their illness by shifting their attention away from the loss toward what they have
gained from being sick and what they can do in the future. They may even come to see
their illness as a gift. Reflecting on the benefits of keeping a gratitude journal, Joan
Buchman wrote that, while journaling, she learned "to value what I have right now."
Thanks to the newspaper, he has recognized that before he became ill "I was not on the
path of happiness and peace. Thanks to FM I have had the opportunity to find out what
is really important for me to have a satisfying and meaningful life."

For her, gratitude does not always mean having to see the bright side or deny pain and
suffering. Instead, for her, gratitude is "appreciating what you have and making the best
of it. It's discovering that you have more power over your life than you imagined
before." (See his article The Healing Power of Gratitude on our website. The Success
Stories section of the website includes other stories from patients who found meaning in
their illness.)

Adjust the objectives to your capabilities

Patient Patti Schmidt describes in her article how she reoriented her life, "Coming to
Terms with a Life I Didn't Plan," which is also on our website. He writes that, once he
had recognized that the disease had changed his life irrevocably, he was left with the
question: What now? She made some changes thinking that she had to accept having to
let go of some things that had been important, but she also recognized that she still had
what was important to her: her family and the ability to contribute something to others.
He decided to focus on the things he could do instead of the things he couldn't, adjusting
his goals to his abilities.

Nourish yourself

Between what you think you have to do and the suffering imposed by the illness, it is
easy for you to let the positive things in your life escape. But we all deserve to have
pleasure and enjoy. Being able to look forward to certain things helps you significantly.
Enjoying positive experiences reduces stress, replaces it with pleasure, and builds a
positive sense of self-esteem.

There are many ways to nourish yourself, many forms of pleasure. It can be physical
pleasure that comes from exercising, laughing, bathing, listening to or playing music, or
from intimacy. Or it may be the delight and satisfaction of tending a garden, painting a
picture, or completing a craft project. Or it may be the mental pleasure that comes from
enjoying the beauty of nature or reading a book or the spiritual satisfaction of
meditation or prayer. Here is how one person expressed the pleasures achieved in his
solitude:

Even though I had always been an art lover, being alone I have developed a deeper
appreciation. In my room I dedicate myself wholeheartedly to literature, familiar and
new; to paintings, wood engravings and ceramics; copies, photographs, reproductions of
paintings, and needlework that I study in books and magazines; to the music...
Experiencing this alone, without distractions, I notice that it reaches deeper into me,
transforming my way of seeing and inspiring my imagination.

New interests and new meaning

A powerful antidote to loss is to develop new interests and, with it, a sense of purpose
and new meaning. Some patients have taken the opportunity to return to arts, crafts and
other hobbies they missed while they were busy with their careers and family. Taking
advantage of so much time available, they begin new activities or resume projects that
they had put on hold during their busy previous lives. Others see their illness as a
challenge and find purpose in trying to understand their illness and expanding their area
of control. Others have found meaning in helping others. They may do this by
participating in a support group or offering help informally. Some have created a group
or lobbied for greater recognition and to sponsor research into CFS and fibromyalgia.
No matter what they have chosen, they have found new ways to give meaning to their
lives.

One way to achieve meaning is to put your life in another framework, objectively, but
safely. In the words of a student in our program:

I'm not the person I was, and I probably won't have the same kind of life I thought I
would have. But it doesn't matter if I recover or not, I try to make as much sense as
possible in my life now and value my qualities that have not changed. I try to remind
myself that I still make a difference to others and that I can still contribute to their lives.

In conclusion

A chronic illness has profound effects because it changes every part of our lives: how
much we can do, our moods, our relationships, our finances, our hopes and dreams, and
our sense of who we are. Even though we may not have control over the ultimate
outcome of our disease, there is much we can do to improve our quality of life.

This book does not contain a cure for CFS or fibromyalgia. Rather, it gives a general
idea of the coping skills that can help you take responsibility for those things that are
under your control. Many students in our groups have improved their quality of life and
some have substantially increased their level of functionality. I hope you can gain the
ability to better manage your illness. May you create the most favorable circumstances
possible so that your body's healing forces can take you to the highest level of
improvement possible for your situation, which is always unique. And I also hope that,
even though you may not have the life you had hoped for, you can still build a good life
for yourself.

References

Cassidy, Gail. "CFIDS, Change and Loss," CFIDS Chronicle 15(Winter, 2002): 20-21.

CFIDS and Fibromyalgia Self-Help website: See the Success Stories archive for articles
by Dean Anderson, Joan Buchman, JoWynn Johns, and Patti Schmidt. See the Coping
Strategies archive for articles on loneliness and the guide to living well with a chronic
illness.

Kubler-Ross, Elisabeth. On Death and Dying . New York: Macmillan, 1969.

Skloot, Floyd. In the Shadow of Memory . Lincoln NB: University of Nebraska Press,
2003.