Physical Therapy for a 37-Year-Old Female with Hypermobile Ehlers-Danlos Syndrome:

Application of the Muldowney Protocol

Author: Matthew Malone

Research Advisor: Caroline S. Gwaltney, PT, DPT, CWS

Doctoral Program in Physical Therapy

Central Michigan University
Mount Pleasant, Michigan

April 19, 2024

Submitted to the Faculty of the

Doctoral Program in Physical Therapy at

Central Michigan University

In partial fulfillment of the requirements of the

Doctorate of Physical Therapy

Accepted by the Faculty Research Advisor

Caroline S. Gwaltney, PT, DPT, CWS

Date of Approval: 04/19/2024

 ABSTRACT

Background and Purpose

Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most frequently diagnosed disorder in the

family of Ehlers-Danlos Syndromes. The overall prevalence of this condition is around 1 in 5000

births. Physical therapy plays an important role in managing the impairments of patients

diagnosed with this condition. There is limited high-level evidence regarding the treatment for

patients with hEDS. However, the existing evidence suggests that physical therapy can improve

patient outcomes. The purpose of this case report was to describe the physical therapy treatment

and outcomes for an adult with hEDS utilizing a graded stabilization exercise program coupled

with osteopathic examination and treatment principles.

Case Description

The patient was a 37-year-old female referred to outpatient physical therapy with a primary

diagnosis of joint pain and instability secondary to hEDS. The patient presented with proximal

muscle weakness and impaired posture upon examination, along with joint pain reported at the

knees, low-back, and neck. The patient also reported mild to moderate impairments on self-

reported outcome measures: The Oswestry Disability Index (ODI), Lower Extremity Functional

Scale (LEFS), and Neck Disability Index (NDI). In addition, sleep quality and childcare abilities

had been impacted negatively. Physical therapy interventions included osteopathic examination

and treatment principles and use of the Muldowney protocol stabilization exercises to address

impairments and work toward patient goals.

Outcomes

After 9 weeks of physical therapy intervention, the patient had made good progress toward her

goals. It was decided that the patient would continue to be seen once a week for 6 more weeks
before additional reassessment. The patient demonstrated improvements in muscle strength in

the bilateral upper and lower extremities. Average pain was found to be reduced in the low-back

and knees significantly, with an increase noted in neck pain following treatment. Outcome scores

for the ODI and LEFS improved, while increased impairment was noted in the NDI.

Additionally, the patient noted subjective improvements in sleep quality, sitting tolerance,

childcare, and pain following long runs.

Discussion

The patient’s outcomes following therapy were consistent with current research. The patient

demonstrated increased strength following the application of the Muldowney Protocol, which

was also shown in the literature. The increased strength allowed for greater active stability and

activity tolerance as evidenced by the patient’s reports of decreased pain following long runs

and improved sitting tolerance. A short treatment duration and patient attendance may have

impacted further improvement in this report. Research has shown that the application of Muscle

Energy Techniques (METs) modulate pain after application, which was reflected in this report.

Further research should be conducted to evaluate the impact of osteopathic treatment and the

Muldowney protocol with a larger sample size, as well as establish psychometrics for outcome

measures specific to the hEDS population.

Background and Purpose

Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most frequently diagnosed disorder

in the family of Ehlers-Danlos Syndromes.1 Encompassing all 13 subtypes of Ehlers-Danlos

Syndrome, the overall prevalence of this condition is around 1 in 5000 births.2 This condition

can present itself in both males and females, but females are much more likely to present with

adverse effects.3

hEDS can best be defined as a genetic connective tissue disorder impacting collagen

production and strength throughout the body. Primary impairments are increased extensibility

and fragility of the skin along with global joint hypermobility.4 This joint hypermobility also

lends people with hEDS to experience frequent subluxations and dislocations of joints. In

addition, many patients with hEDS also have symptoms such as increased daily fatigue,

gastrointestinal, and cardiovascular issues. The most reported symptom with hEDS is chronic

joint pain, with an incidence rate as high as 90%.1,3 Presentation and severity of symptoms vary

widely between individuals and can range from non-symptomatic to complete inability to

perform daily activity independently.3

To date, no clinical practice guidelines have been developed for the treatment of this

condition. Corrado and Ciardi5 performed a systematic review in 2018 and found little to no

high-level evidence supporting hEDS treatment, with nearly all research primarily found to be

conducted in single-participant case reports. Although no high-level evidence has been

disseminated, a retrospective study into the medical history of patients with hEDS found that

63.4% found improvement in outcomes of pain and general state of health after physical

therapy.6

1
 Randomized controlled trials exist that focus on treatment of generalized instability

without a diagnosis of hEDS; these studies may be extrapolated to patients with hEDS.

Puntumetakul et al7 recently examined the effect of core stabilization exercises versus general

strengthening in patients with chronic lumbar instability. Thirty-four patients with lumbar

instability were blindly randomized into two groups: either performing 10-weeks core

stabilization exercises emphasizing abdominal drawing-in maneuvers or general strengthening

exercise. Both groups completed 20-minute sessions twice a week for 10 weeks. Primary

outcomes monitored were average daily pain intensity, lumbar segmental motion, and trunk

muscle activity, measured at baseline, post-treatment, and at a 12-month follow-up. At the

conclusion of treatment, both groups had significantly decreased their average pain rating with

the core stabilization exercises having a higher decrease than the general strengthening group. At

12-month follow-up, both groups improved in their outcome measures. Notably, the core

stabilization group also demonstrated significantly higher activation of the transversus

abdominus muscle and internal oblique muscles at the ten-week follow up. In addition, the core

stabilization group demonstrated significantly lower segmental translation of lumbar segments at

the post-treatment mark. These findings help to illustrate that core stabilization exercises can

benefit average pain ratings and possibly decrease excess and aberrant joint motion in the lumbar

spine.

Despite hypermobility, some patients with hEDS require careful osteopathic treatment to

address joint dysfunction causing pain. In a recent single participant report, Khokar et al8

examined the impact of osteopathic treatment on a patient with hEDS. The patient was seen for

three visits over three weeks; pain level and subjective symptom severity were measured both

before and after each treatment. At each session, the patient was treated with a variety of

2
techniques including muscle energy techniques, soft-tissue manipulation, counterstrain, Still’s

technique, and high-velocity low-amplitude mobilization. The patient reported both significant

reductions in pain and symptoms immediately following the session, as well as reporting that

this improvement carried on for several days following before symptoms reemerged. This small

report helps to support the possible efficacy of osteopathic manipulative treatment for managing

chronic pain in patients with hEDS.

In 2018, Laferrier et al9 published a case report demonstrating the success of a novel

exercise protocol designed specifically to treat patients diagnosed with hEDS (Laferrier et al

2018). The participant in this report had been having global chronic pain and fatigue for six

years prior to the initiation of treatment. Pain was evaluated using a numeric rating scale and

found to be subjectively rated as follows: 6/10 upper extremities, 7/10 cervical spine, 6/10

thoracic spine, 9/10 lumbar spine, and 8/10 lower extremities. The patient also demonstrated

moderate to severe disability in the following outcome measures: Oswestry Disability Index,

Neck Disability Index, Lower Extremity Functional Scale, and Upper Extremity Functional

Index. The patient was then treated using a graded exercise protocol developed by Kevin

Muldowney10 emphasizing stabilization and gradual strengthening. The exercise protocol

focused on three areas: 1) the sacroiliac joint and lumbar spine, 2) the cervical, thoracic spine

and upper extremities, 3) the lower extremities. Exercises were performed using a time-based

duration rather than repetitions, and each focus area has multiple levels which are progressed as

the patient can perform 3 continuous minutes of exercises at the previous level. The patient was

treated three times each week for a duration of one year. At discharge, the patient had remarkable

outcomes of no pain in all areas evaluated initially, and no disability measured on all outcome

3
measures. This report illustrates the success of a stabilization protocol in managing the

symptoms of a patient diagnosed with hEDS.

Overall, there is limited high-level evidence regarding the treatment for patients with

hEDS. However, the existing evidence suggests that physical therapy can improve patient

outcomes. The purpose of this case report was to describe the physical therapy treatment and

outcomes for an adult with hEDS utilizing a graded stabilization exercise program coupled with

osteopathic examination and treatment principles.

Prior to preparing this report, consent was obtained from the patient to proceed. All

information contained in this case report meets the Health Insurance Portability Accountability

Act (HIPAA) requirements of the clinical agency for disclosure of protected health information.

This case report was completed under the direction of the Department of Physical Therapy and

with the oversight of the College of Graduate Studies at Central Michigan University.

Case Description

Patient History and Systems Review

The patient was a 37-year-old female referred to outpatient physical therapy with a

primary diagnosis of joint pain and instability secondary to hEDS. The patient stated she felt the

most pain and instability at her sacroiliac joint, cervical spine, and bilateral knees. The patient

described herself as an avid runner, with her monthly mileage totaling between 150-200 miles.

She mentioned a co-morbid diagnosis of postural orthostatic tachycardia syndrome (POTS) but

reported POTS symptoms were well under control with compression garments and adequate

hydration. She did note that these symptoms were easily impacted by external factors such as the

weather and sleep quality.

4
 She described dealing with increased joint pain since her diagnosis of hEDS in 10 years

ago, but in the last 4 months began experiencing increased bilateral low-back, hip, and knee joint

pain following her runs that would last for multiple days and limit her ability to carry out her

necessary daily tasks, prompting her to seek a referral for help managing her symptoms. In

addition to this primary complaint, the patient also noted increased pain after prolonged sitting in

her low-back and hips. Sleep quality had also been impacted lately, with the patient describing

frequent shoulder subluxations during sleep causing pain and abrupt awakening. No lower

extremity subluxations were reported, but bilateral knees felt “loose” while standing and running.

All pain reported was described as achy or sharp, and the patient made no mention of

numbness/tingling or peripheralization of pain.

A review of systems was conducted prior to the initiation of the evaluation. In addition to

POTS, comorbid diagnoses of note were spondyloarthritis, chronic migraines, and

depression/anxiety. Surgical history was significant for hysterectomy, C-section, tonsillectomy,

and benign mass removal from the right breast. A list of patient medications can be found in

Table1.

The patient reported she was independent in all activities of daily living prior to the onset

of pain, but she was currently having difficulty sitting for long periods of time due to pain. In

addition, cleaning the house and taking care of her children as a stay-at-home mom was

becoming troublesome. She had previously had an assessment when purchasing running shoes

and had taken their recommendations for shoe inserts.

The patient lived in a single-level home with her husband and two children. The patient

explained during evaluation that finding childcare was often difficult for her and it may impact

her ability to attend sessions. Her preferred hobbies included running, reading and crafting. The

5
patients stated goals for the outcome of physical therapy were to develop strong/stable joints,

improve ability to sleep, improve sitting tolerance without pain, and be able to run without

lingering pain.

Clinical Impression #1

Based on the subjective information and her diagnosis of hypermobility syndrome, it

was expected that the patient would present with global joint hypermobility and instability. The

severity of the hypermobility syndrome would be assessed using the Beighton Score. Muscle

strength would also be assessed using manual muscle testing (MMT). It is valuable to assess

muscle strength in any patient, but especially those with hypermobility as passive stabilization

ability is weakened. As pain was identified as the limiting factor of most activities, it would be

pertinent to objectively assess and track pain levels and function. Function would be assessed

using questionnaires such as the Numeric Pain Scale, Lower Extremity Functional Scale (LEFS),

Neck Disability Index (NDI), and Oswestry Disability Index (ODI). As an avid runner, it is also

applicable to conduct a gait analysis to observe abnormalities. To provide a more patient-

centered approach to treatment, the patient’s functional goals would be assessed using the Patient

Specific Functional Scale (PSFS).

Based on her subjective report, it was felt that this patient’s case would make an

interesting case report. The patient had a complex mix of comorbidities with hEDS and POTS

coupled with her report of avid long-distance running. In addition, the patient dealt with her

reported symptoms for an extended amount of time with a recent noted increase in severity.

Finally, with a lack of high-level evidence for the treatment of this diagnosis, any interventions

implemented can help to provide a larger base of knowledge for treatment.

6
Examination

Observational Assessment. The patient’s posture was assessed throughout the course of the

evaluation and revealed multiple postural abnormalities. In sitting, forward head posture was

noted along with decreased lordotic/kyphotic curvatures in the lumbar, thoracic, and cervical

spine. In standing, the patient’s forward head posture persisted, along with rounded shoulders

and decreased lordosis in the lumbar spine. Knee hyperextension was also noted bilaterally in the

resting standing position, with the right knee showing more than the left. A brief assessment of

gait was also conducted. During the evaluation, her gait pattern was non-antalgic with no notable

deviations.

Strength. Upper and lower extremity strength was assessed utilizing Manual Muscle Testing

(MMT) using testing positions outlined by Reese11. Grading of the tests was performed using the

scale defined by Kendall12 to help tease out areas of more significant weakness. MMT has been

shown to be most reliable when performed with the same tester (r=0.80-0.99),13 and this strategy

was adopted. Schwartz et al14 has also found MMT to have adequate to excellent convergent

validity (r=.3->.6) with myometry in spinal cord injury patients. Although not specific to this

patient population, this study illustrates that MMT can accurately assess strength. All major

joints of the body were assessed, and specific grades can be found in Table 2 and Table 3.

Overall, the patient demonstrated muscle weakness primarily in the shoulder and hip joints, with

more distal muscle groups testing well. Additionally, pain and instability were noted during

MMT of the bilateral hip and shoulder joints.

Flexibility testing. To objectify global hypermobility, the Beighton Scoring System was

performed following guidelines set by the Ehlers-Danlos Society.15 This system is used to

measure joint hypermobility on a 9-point scale, including flexibility of the thumbs, pinkies,

7
elbows, knees, and spine. Positive markers include 5th digit extension greater than 90 degrees,

elbow and knee hyperextension greater than 10 degrees, the ability to touch the thumbs to the

forearm, and the ability to place hands flat on the floor in standing. A systematic review of

studies found the intra-rater reliability of this measure to be excellent.16 A five-part questionnaire

is also included examining patient reported history of hypermobility. Studies examining the

validity of this test and its ability to measure true global hypermobility in adults were not found

in the literature, but it has been proven to be a good predictor of global hypermobility in the

pediatric population.17

The patient’s Beighton Score was a 4. She answered yes to considering herself double-

jointed and dislocating her shoulder during childhood, and additionally presented with elbow

hyperextension bilaterally, knee hyperextension on the right only, and the ability to place hands

flat on the floor in standing. According to Juul-Kristensen15, a score of 4 with 2 or more

questions answered yes in the questionnaire or a total score of 5 points or higher is a good

indication of global hypermobility syndrome.

Pain Assessment. The patient’s average daily pain was assessed using the Numeric Pain Rating

Scale. In people with chronic pain, this scale has shown adequate test-retest reliability (r=.63)

and excellent concurrent validity with the Visual Analog Scale (r=.86).18,19 The minimally

clinically important difference (MCID) for this test in patients with chronic pain was found to be

1 point.20 The patient was asked to rate her average pain experienced in the last 24 hours in the

three areas she identified as primary issues: the knees, the neck, and the low-back. The patient

gave 5 out of 10 ratings for the knees and low-back, and a 4 out of 10 rating for the neck.

Outcome Measures. To provide an objective measurement of the impact of joint pain on the

patient’s ability to complete daily activities, three questionnaires were utilized highlighting

8
different areas of the body. The ODI is a 10-item form that measures severity and impact of low-

back pain specifically.21 This test has shown excellent test-retest reliability (ICC = 0.97 (0.94 -

0.98); 95% CI) and excellent correlation with the Visual Analog Scale for low-back pain (r = -

0.71).22,23 The minimal detectable change (MDC) for this form in patients with low-back pain

was found to be 10 points.22 The patient’s overall score after completion was 10 out of 50,

indicating a 20% impairment related to her low back pain.

The LEFS is a 20-item form scored from 0-80, with a lower score indicating higher

impairment.24 Test-retest reliability and correlation with the physical function subscale of the

Short Form 36 has been found to be excellent (r = 0.94), and was administered using the same

guidelines. The MDC for this form has been identified as 9 points. The patient reported a total

score of 74 after completing the assessment, identifying minimal disability related to her lower

extremities.

The NDI is a 10-item, patient-reported outcome that assesses the impact of neck pain on

functional capacity.25 Questions are scored 0 to 5, and a higher score indicates more impairment.

In 2009, Young et al26 determined the retest reliability (ICC = 0.64) and construct validity (r =

0.52) compared to the Global Rating of Change to be adequate in patients with mechanical neck

disorders. The authors additionally determined the MDC to be 10.2 points. The patient’s initial

score for this measure was 12 out of 50, which would classify as mild neck-related disability

(24%).

The PSFS allows an individualized objective assessment of goal attainment. The patient

self-selects goals and then rates their ability to perform them on a 0-10 scale. Stratford et al27

determined that this measure shows high retest reliability (ICC = 0.97) and concurrent validity (r

= -0.67). The authors also established an MDC of 2 points in patients with chronic pain. The

9
patient chose the following goals: reduce pain to be able to sleep for seven continuous hours, to

be able to ride in the car for greater than thirty minutes before the onset of pain, and to be able to

sit on the floor for greater than 30 minutes to complete crafts and activities with her daughter.

The patient rated her ability to do each of these tasks as 6.5/10 initially.

Clinical Impression #2

The patient presented with proximal muscle weakness and impaired posture upon

examination, which were to be expected based on subjective information. When coupled with a

diagnosis of hEDS and reduced passive stability, there is increased stress placed on the joints

during movement causing pain and inflammation as a result. This would become increasingly

limiting with the distance running the patient regularly performed. The inability to maintain

proper joint position would also result in increased pain while performing extended periods of

sitting or lifting and caring for her children. Without the ability to maintain proximal stability,

more stress is placed on distal joints which could be a contributing factor to the knee pain and

instability the patient reports with prolonged standing and running. Regarding the patient’s

outcome measures, it was felt that pain was limiting her ability to complete multiple everyday

tasks to a mild degree. Although physical therapy cannot affect weakened passive stability

resulting from hEDS, improving the patient’s strength, dynamic stability, and awareness of

correct movement patterns was expected to improve her function and quality of life.

The patient’s prognosis for improvement was good. The patient was independent prior to

the onset of pain, and she reported being regularly highly active. The patient was a regimented

runner which was expected to translate into high adherence to prescribed home programs.

Barriers to recovery included the complexity of hypermobility syndromes and comorbidities, as

well as reliable attendance.

10
 After assessing the patient’s function, a plan of care was made. It is inferred that patients

with hEDS have excessive joint motion globally. This increased motion may lead to joint

malalignment causing excess stress to be placed in certain joints causing pain with movement.

To best achieve active stabilization, strengthening should be done with the spinal column in

optimal alignment. Each session would involve an extensive alignment screen to identify and

treat any outlying asymmetries in joint motion. Once re-aligned, the patient would begin a

graded stabilization exercise protocol outlined by Kevin Muldowney10. In addition to the weekly

sessions, performance of the stabilization exercises at home would be necessary to obtain the

optimal frequency of intervention. The goals of therapy were to become independent in the

performance of the stabilization exercise protocol, improve joint stability, reduce average daily

pain, and increase ability to tolerate running and other daily activities with less pain. To meet the

therapy goals as well as the patient’s goals, she would participate in physical therapy one day per

week for 9 weeks before reassessment.

Following the examination, it was felt this patient remained a good candidate for a case

report. The patient’s examination matched up well with her subjective reports. With very little

evidence provided for the treatment of patients with hEDS and their variable presentations, any

intervention provided with positive outcomes will help to increase the base of knowledge for the

treatment of this diagnosis.

Interventions

The patient participated in physical therapy once each week for 9 weeks with sessions

lasting 45 minutes prior to interim reassessment. The intervention classifications used to address

noted impairments and progress toward reaching set goals included therapeutic exercise, manual

therapy, and neuromuscular re-education. At the start of each session, the patient received an

11
axial osteopathic examination to identify any sacroiliac or spinal asymmetry of motion. If any

dysfunction was noted during examination, it was treated using Muscle Energy Techniques

(METs) and reassessed until motion was found to be symmetrical. These techniques were

utilized for realignment as there is low-level evidence to support the use of these techniques in

patients with hEDS while more aggressive forms of mobilization are contraindicated in this

population.8 Treatment was performed in this order so that the spine would be in better

alignment with symmetrical movement prior to the initiation of strengthening.

Over the course of treatment, the patient presented with several asymmetries at different

sessions. At multiple sessions, a left innominate upslip was noted. This was corrected using a

grade 2 sustained inferior glide over the left iliac crest with the patient in supine. This method

was chosen to avoid placing stress over the knee and ankle which occurs with the more common

correction technique. The patient also often presented with a posterior rotation of the right

innominate. METs were performed in accordance with techniques defined by DeStafano28. A

supine technique using hip flexor activation to anteriorly rotate the innominate was chosen for

correction. Several sacral asymmetries were noted during treatment, with a backwards right on

left torsion being the most frequent, which was corrected using a side-lying MET using

facilitation of the abductors. Lumbar spine examination revealed several type II dysfunctions

across different sessions, which were corrected using autogenic inhibition METs in seated.

Thoracic and cervical spine examinations did not reveal any asymmetric movement patterns. All

corrections performed demonstrated improved symmetry and motion after one application of the

corresponding technique. After realignment was achieved, the patient was then strengthened

using the Muldowney Protocol.

12
 The Muldowney Protocol is a graded stabilization exercise program developed by Kevin

Muldowney10. Exercises are divided into three categories focusing on different areas of the body

and completed using a time-oriented duration rather than repetitions. During the education of the

exercises, emphasis is placed on slow, controlled movement with the goal of enhancing

stabilization and awareness of the mechanics of movement. Each category is multi-level, and

participants begin each level performing exercises for 90 seconds each. These exercises are then

added to a home-program to reach the target frequency of performance, at least 3 days per week

to daily if possible. Patients progress their duration of performance until each exercise in a given

level can be performed for 3 consecutive minutes, at which point they are educated on the next

level of exercises. The end goal of this treatment approach is to increase the active stabilization

of the joints of the body while providing a comprehensive home program for lifelong

management of symptoms.

In the first session, the patient was instructed on the performance of the first level of

lumbar and sacroiliac stabilization exercises, termed Mat level 1. The patient performed each

exercise for the initiation timeline. If the patient demonstrated accurate performance of the

exercises, the level was then issued to the home program for progression to the full timeline

independently. At the second session, the patient was instructed on the performance of the first

level of upper extremity and neck stabilization exercises, termed Head, Neck, and Shoulders

level 1. The patient reported high adherence to the home program performing each 5 times per

week at home outside of therapy and progressing as tolerable in duration. Secondary to her high

adherence at home, the patient was able to progress to the next level in each of these categories

in alternating weeks of treatment. It should be noted that the lower extremity focus area was not

initiated by the time of reassessment. This was because the primary focus of initial treatment was

13
to strengthen proximal stability in the trunk, shoulders, and hips before advancing to more distal

stabilization activities. By visit 9, the interim reassessment session, the patient had progressed to

the third level in each of these respective categories and was performing just below the 3-minute

duration to advance to the level 4. A full list of the exercises in each level of the program

completed can be found in the Appendix.

In addition to manual therapy and protocol-based treatment, the patient was educated on

METs to be performed at home daily at the second session. The rationale for this prescription

was to help improve daily joint alignment to mitigate joint pain caused from malalignment. As

the patient would be unable to perform any alignment assessments on her own, she was

instructed to perform each correction bilaterally. These techniques are preferred as they utilize

low-grade contractions that are unlikely produce malalignment from their performance. Patients

with hEDS often present with pain secondary to muscle spasm to protect unstable joints.1,3 These

techniques utilize muscle inhibition strategies that aim to both provide gentle realignment while

relaxing spasm.

Outcomes

After 9 weeks of physical therapy intervention, the patient had made good progress

toward her goals. With some long-term goals not yet achieved, it was decided that the patient

would continue to be seen once a week for 6 more weeks before additional reassessment. At the

time of reassessment, the patient wished to focus on improving her upper extremity and neck

pain as she felt she had made excellent progress toward her lower extremity goals.

Strength

Overall, the patient demonstrated improvements in muscle strength in the bilateral upper

and lower extremities with a few exceptions. The full results of the testing can be found in

14
Tables 2 and 3. Primary improvements of note were bilateral hip and shoulder strength. At initial

evaluation, hip flexion was rated 3/5 bilaterally with pain, and at reassessment was graded 4/5

bilaterally without any pain noted during testing. All shoulder strength assessments improved by

at least 1/3 MMT grade on reassessment except for right shoulder internal rotation.

Pain

Pain was reassessed at the hips, low-back, and neck using the Visual Analog scale, and

the patient demonstrated improvements in some areas. The patient rated her pain 2/10 for the

knees, 3/10 for the low-back, and 6/10 for the neck. The patient surpassed the MCID for knee

and low-back demonstrating a meaningful improvement.20 The patient’s neck pain rating 6/10

was higher than her original rating at evaluation and did not show a significant change.

Outcome Measures

All three outcome measures recorded at initial evaluation were reassessed after 9 weeks

of therapy. The patient scored 80/80 on the LEFS demonstrating no impairment. The patient was

unable to attain the 9-point MDC secondary to her high score on initial assessment.24 The

patient’s ODI score on reassessment was 1/50, demonstrating a 9-point improvement from initial

evaluation, but a point less than the MDC of 10 points.22 On the NDI, the patient scored 16/50

showing more impairment than initial score of 12/50.

The PSFS was readministered to monitor progress toward patient-set goals. After initial

ratings of 6.5/10, the patient rated 8/10 for each of her previously stated goals: reduce pain to be

able to sleep for seven continuous hours, to be able to ride in the car for greater than thirty

minutes before the onset of pain, and to be able to sit on the floor for greater than 30 minutes to

complete crafts and activities with her daughter. These ratings demonstrate improvement but did

not reach the MDC of 2 points for significant change.27

15
Subjective Improvement

In addition to recording objective improvement, the patient was asked for her personal

opinion on any changes noticed since the initiation of therapy. In several treatment sessions, the

patient immediately noted improvements in pain following the application of METs to restore

symmetric spinal and sacral alignment. At reassessment, the patient noted several additional

improvements. She stated that she had initially been sleeping better, with less occurrence of

shoulder subluxation. She endorsed significant reductions in pain following her runs and a

greater sense of stability in her knees with running. When asked about childcare, it was noted

that the tasks she needed to complete each day around the house as well as playing with her

children had become less bothersome on her low-back. On the opposite side of the spectrum, the

patient described increased pain in her neck beginning to impact her ability to read and had

recently begun disrupting her sleep. Overall, the patient was satisfied with her progress at this

point in her episode of care.

Discussion

The purpose of this case report was to describe the physical therapy treatment and

outcomes for an adult with hEDS utilizing a graded stabilization exercise program coupled with

osteopathic examination and treatment principles. Physical therapy interventions included

therapeutic exercise, manual therapy, and neuromuscular re-education utilizing the Muldowney

Protocol. There is a lack of high-quality evidence focused on physical therapy treatment of

patients with hEDS; however, the Muldowney Protocol may be a useful tool to guide

intervention planning.

The patient’s improved strength and pain ratings were consistent with current research

examining the use of lumbar stabilization exercises. When Puntumetakul et al7 performed 10

16
weeks of core stabilization exercises on patients with chronic lumbar instability, they found a

significant average pain reduction of 4.3 points using the Numeric Pain Rating Scale. The

participant in this report also experienced a 2-point reduction in rated low-back pain. With

similar baseline pain ratings, the magnitude of improvement following the implementation of

lumbar stabilization was lower for the patient in this report. The decreased frequency and

duration of treatment received may explain why the impact wasn’t as profound, but the patient

was expected to make additional gains with 6 more weeks of therapy. In addition, strength

improvements were noted in the larger hip muscles surrounding the low-back. This improvement

in strength may have led to increased ability to stabilize the lumbar spine during the patient’s

daily activities and reduced the pain caused by excess and aberrant motion. These findings are

congruent with the Puntumetakul et al7 study, in which subjects also demonstrated improvements

in lumbar and core musculature via surface electromyography. Based on the comparison to the

literature, it may be inferred that the application of stabilization exercises may have contributed

to improved strength and stability of the lumbar spine.

The patient’s improvement in pain ratings following the implementation of osteopathic

treatment and the application of METs were congruent with the case study conducted with

Khokar et al8 in 2023 on a patient with hEDS. When the authors performed METs to correct

spinal dysfunctions noted, their patient reported immediate significant reductions in pain

occasionally as high as 5 points on the Numeric Pain Rating Scale. Although not objectively

assessed, on several occasions the patient in this report noted immediate improvements in pain

following MET application. With the goal of these techniques to restore symmetric joint motion

and alignment, it can be inferred that this improved alignment allowed for ideal positioning of

the spinal column to distribute forces more evenly and avoid excess stress on single joints which

17
may be causing pain. In addition, the inhibitory effect of METs may have relaxed muscle spasm,

which has been noted to be increased in patients with hEDS to combat their increased joint

mobility using active stabilization.1

Although positive outcomes, were achieved for the patient in this case report, the

application of the Muldowney protocol was not as impactful in this report as the one completed

by Laferrier et al9 in 2018. In their report, the patient did not have any noted impairments at

discharge. Several differences in the prescription of the protocol may help to explain these

differences, primarily frequency and duration of treatment. The patient in this report was treated

for a much shorter episode of care prior to reassessment, while also being seen less frequently

each week. With performance of stabilization exercises primarily occurring at home, the only

verification of performance received is through patient report. Without visual confirmation, it

cannot be proven that the patient was performing exercises to the volume reported subjectively.

Patient attendance may also have been a barrier to improved outcomes in this report. In the 9

weeks between initial evaluation and reassessment, the patient was unable to attend 2 sessions

due to unforeseen circumstances. With full attendance, the patient would have been able to

progress further through the stabilization exercises and this may have influenced further

improvement of symptoms. In addition, the patient did not alter the volume of her running

program throughout treatment. While lower extremity and back symptoms improved, this high

impact repetitive activity may have contributed to increased pain along the spinal column

extending up to her neck.

Several factors can be identified as having a positive impact on patient outcomes. The

patient’s previously active lifestyle and familiarity with regimented exercise led to high reported

18
adherence to the exercise protocol. This allowed for expedited progression through the program

and higher-level stabilization exercises to be performed. The patient’s well-controlled comorbid

POTS diagnosis allowed for minimal disruption of treatment progression both at home and

during physical therapy. Uncontrolled POTS can greatly influence a person’s ability to tolerate

exercise and positional changes,29 but this was not a factor in the treatment of this patient.

Despite mostly positive outcomes from this application of physical therapy interventions,

limitations exist for its use as evidence. At the time of the completion of this report, the patient

had not concluded her episode of care, and the Muldowney protocol had not yet been completed

to its full extent. Patients with hEDS have a wide variability in presentation, and the protocol

applied to a single participant in this report.Thus, the application of this protocol cannot be

inferred to impact each patient in a similar manner at this time.

Future research should investigate the outcomes of the application of the Muldowney

Protocol on patients with hEDS utilizing a larger sample size. In addition to this, the impact of

osteopathic treatment should also be more extensively examined with a larger sample size. With

minimal high-level evidence currently available, a randomized controlled trial utilizing the

Muldowney protocol or osteopathic treatment principles could help strengthen the case for its

use more widely. Finally, future studies should attempt to establish psychometrics for outcome

measures specific to the hEDS population. Although the reliability and validity of the outcome

measures used in the treatment of this patient have been proven in similar populations, their

content has yet to be studied specifically hEDS patients.

19
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22
Table 1.
Patient Medicationsa
Medication Dosage

50 mcg daily
Fluticasone propinate
70 mg every 4 weeks
Erenumab-aooe
137 mcg prn
azelastine
5 mg daily
levocetirizine
200 mg prn
celecoxib
amg = milligrams. mcg = micrograms
Table 2.
Upper Extremity Manual Muscle Testing12 Scoresa
Movement Tested Initial Initial Discharge: Discharge:
Examination: Examination: Left Strength Right Strength
Left Strength Right Strength Grade Grade
Grade Grade
Shoulder Flexion 3+ 4- 4+ 4+

Shoulder Extension 5 4+ NT 5

Upper Trapezius 3 3 4- 4-

Middle Trapezius 3 3 3+ 3+

Lower Trapezius 3 3 3+ 3+
Shoulder Internal 5 4 NT 4+
Rotation
Shoulder External 4+ 4+ 5 4+
Rotation
Elbow Flexion 5 5 NT NT

Elbow Extension 5 4+ NT 4+

5 4+ NT 5
Wrist Flexion
5 4+ NT 5
Wrist Extension
Wrist Ulnar 5 5 NT NT
Deviation
Wrist Radial 5 5 NT NT
Deviation
a3 = holds test position. 3+ = holds test position against slight pressure. 4- = holds test position

against slight to moderate pressure. 4 = holds test position against moderate pressure. 4+ = holds
test position against moderate to strong pressure. 5 = holds test position against strong pressure.
Table 3.
Lower Extremity Manual Muscle Testing12 Scoresa
Movement Tested Initial Initial Discharge: Discharge:
Examination: Examination: Left Strength Right Strength
Left Strength Right Strength Grade Grade
Grade Grade
Hip Flexion 3 (painful) 3 (painful) 4 4

Hip Extension 3- 4- 4+ 4

Hip Abduction 4 4 4+ 4+

Knee Flexion 5 5 NT NT

5 5 NT NT
Knee Extension
5 5 NT NT
Ankle Dorsiflexion
5 5 NT NT
Ankle Plantarflexion
5 5 NT NT
Ankle Inversion
5 5 NT NT
Ankle Eversion
a3 = holds test position. 3+ = holds test position against slight pressure. 4- = holds test position
against slight to moderate pressure. 4 = holds test position against moderate pressure. 4+ = holds
test position against moderate to strong pressure. 5 = holds test position against strong pressure.
Appendix
Lumbar and Sacroiliac Stabilization Exercises10
Mat Level 1 Mat Level 2
• Supine Hook-lying
Bridges
• Supine Hook-lying
Marches
• Supine Hook-lying
Adductor Ball
Squeezes
• Supine Hook-lying
Clamshells with level
1 band resistance
• Prone Hip Extension
Upper Extremity and Neck Stabilization Exercises
Head Neck Shoulders level 1 Head Neck Shoulders level 2 Head Neck Shoulders level 3
• Supine Scapular
Retraction
• Supine Cervical
Retraction
• Supine Serratus
Punches
Mat Level 3
• Supine Hook-lying • Supine Hook-lying
Bridges with Bridges with Kickouts
Adductor Ball • Supine Dying Bugs
Squeeze • Prone Hip Extension
• Supine Hook-lying with Opposite
Marches with Shoulder Overhead
Kickouts Extension
• Supine Hook-lying “Superman”
Adductor Ball • Supine Hook-lying
Squeezes Adductor Ball
• Supine Hook-lying Squeezes
Clamshells with level • Supine Hook-lying
2 band resistance Clamshells with level
• Prone Hip Extension 3 band resistance
with Opposite
Shoulder Horizontal
Abduction in 90/90
Position “Prone
Swimmer”
• 4-Way Isometric Neck • Prone Cervical
• Seated Shoulder Retraction
Internal Rotation • Seated Shoulder
• Seated Shoulder Internal Rotation with
External Rotation level 1 band resistance
• Full-Can Scaption • Seated Shoulder
• Seated Short-Arc External Rotation
Shoulder Abduction with level 1 band
• 4-Way Wrist Motion • Full-Can Scaption
• Prone I’s with 1# resistance
• Prone Y’s • Seated Shoulder
• Prone T’s Abduction
• 4-Way Wrist Motion
with 1# resistance
• Prone IYT’s with 1#
resistance