1. Physical Therapy Modifications for EDS
Heather A Purdin, MS, PT, CMPT

2. Heather Purdin, M.S., P.T., C.M.P.T.
Graduate of Duke University 1995 with BS in BioPsychoSocial Psychology, Health Psych, and Neuropsych
Honors Thesis on Pain Behaviors in Children
Master’s Degree in Physical Therapy Duke University 1997
Special Initiatives award for “enhancing awareness of cultural diversity in our program and profession”
Private practice owner with mission to provide holistic care. Large portion of patients have EDS and chronic pain
Personal experience living with HEDS
President of the Oregon Area Ehlers-Danlos Support Group
Manual Therapy Certificate through NAIOMT
Voted among “Portland’s Top Doctors and Nurses 2015” Portland Monthly Magazine
Attended Ehlers-Danlos National Foundation conferences and Doctor’s Conference last 3 years
Personal interaction with Portland, OR area EDS experts

3. Biopsychosocial model: Bio/Mechanics = PT
Discharge goal is to teach neutral joint mechanics at all joints for all activities.
Where to start? Think like Shirley Sahrmann, PT. Is it the loosest or the tightest link that is the biggest problem? Beware of the tight one
Start at the biggest complaint & relieve the most pain quickly to get buy in and if this isn’t the tightest or loosest link then go there next.

4. Key Components to PT Program
Education about condition, pacing, self rx, diet, rest, sleep, Explain Pain, stress management, ergonomics
Manual therapy to reduce pain sensitivity
Proprioception, coordination and kinesthesia
Core stability endurance and strength
Global Muscle strength and endurance
Controlled flexibility
Cardiovascular fitness
Relaxation and breathing

5. Mechanics of Functional Movements – get a quick change in pain
Sit to stand
Posture in sitting or standing
Sleeping posture, surface, support
Bracing – for flares, prevention, orthotics
Mechanics of specific functions
Reaching and neutral shoulder (scapular movement and shoulder stability)
Engaging muscles before moving (compensating with cognitive activation)
Examples: Shoulder setting (up instead of down, ball back in socket)
hip posterior seating, no hip flexor use without glut use usually
Rib setting with ½ inhale before lifting

6. Bracing and Taping Multidirectional instability of the _____
Hips, Shoulders, SI, Knees, Ribs, Fingers
Give patient resources to self manage painful areas as they arise
Teach patient to brace for the activity
Benefit may be from proprioceptive feedback

7. Manual Therapy – soft tissue
Re-align collagen fibers and release cross fibers through myofascial release
Reduce guarding in muscles and fascia – unwinding, strain- counterstrain with caution to avoid end range at unstable areas
Rhythmic oscillations to reduce tone to normal
Reset autonomic nervous system

8. Manual Therapy - Joints
Correct alignment with Muscle energy technique, specific mobilization
Extreme caution with Grade V manipulation to be very specific and not beyond strength of tissues, caution re: stretch reflex activation
NAIOMT training
DC using Activator, Atlas Orthogonal Technique

9. Exercise and Mechanical Stress
Assess recent activity to determine fragility of tissues
Increases mass of ligaments and tendons
Makes them stiffer and able to tolerate heavier loads at failure
Muscles start to change 3-5 days after reconditioning with full strength at 6 weeks and muscle weight at 3 months in normals
Connective Tissue is slowest to normalize after injury
Ligaments begin to increase tensile strength by 5 weeks but full recovery 6 months to 3 years
Endurance exercises at low intensity increase collagen production and hypertrophy of ligament fibers
Weight bearing and loading – important for bone hardening
Avoid cold – due to increased muscle activity, contractions of collagen fibers, difficulty with circulation

10. Mechanics of Stretch
Stretch aligns collagen fibrils and cross fibers that develop when not stretched
Reduces pain
Caution for overstretch: Do 80% of what you think you can ?
Initially 3-5 sec to avoid C-fiber pain response
Keep joints in neutral alignment

11. Mechanics of Strength
Muscle fibers become disorganized with lack of use and become more painful – this is reversed with strengthening
Regular strengthening lowers biochemical inflammatory response in muscles and lowers systemic inflammation
Initially avoid eccentrics due to higher pain levels associated and tissue damage potential

12. Recommended Strength Exercise
Spine stability with proprioceptive feedback i.e. lean against wall/on floor before removing support
Spine stability in functional movements next
Ball exercises, balance ex
External focus - lasers
Pool exercises
Light weights – engaging proper muscles is chief concern before ↑ weight
Caution with bands that get tighter toward end range
Neutral Joints!
Symmetry

13. Strengthening – tips
Isometric exercises can seem “easy” but actually be very difficult to coordinate without over contracting/shortening
Ragged red cells with chronic pain don’t line up correctly and get off track with contraction
Stretch after strength to line up muscle fibers again/reduce over contraction
Try flowing motions, external focus to improve coordination - lasers
Try alternating agonist and antagonist contractions – example: push then pull

14. Strengthening – how hard to go?
#1 rule is to protect all joints at all times
Stay pain free whenever possible – initially the pain free zone is very narrow and then expands as patient desensitizes – PTs can shine here with knowledge of kinesiology/body mechanics
Optimal strength effect sets to fatigue (12-20 reps) 3x/week
Initially – 1st 2 weeks’ gains are from neuromuscular connection and lighter but more frequent exercise may be OK – repeat exercises once recovered from last workout
40-80% of what a patient thinks he/she can do
RPE 0-10 scale: 4-5/10 initially for 1st week, 5-6/10 2nd -4th week, goal of attaining 7/10 for most and 7-8/10 for athletes
The longer since you’ve strengthened the slower you need to go
2 hour recovery rule: 2 hrs later pain level ≤ prior level

15. Physiology of Cardiovascular Exercise
Chronic pain leads to fewer mitochondria, slower Kreb’s Cycle which improves with chronic exposure to cardio
Increased circulation to remove waste products, bring oxygen and reduces need for adrenaline to perfuse vital organs and distal regions
Ideal: daily, outdoors, 10 minutes working up to 3-6x/week min, RPE ≤7.5/10
Start cardio after initial core stabilization training or use machines that assist stability (row machine, recumbent bike)

16. Cardio effects on mood and pain
When Your Body Gets the Blues – 10 minutes of walking outside in the clouds elevates mood for 1.5 hrs
compared to chocolate consumption, there is no “low” afterwards

17. Cardio, Strength and POTS
CHOP protocol - 8 months for kids fh289ry298fhijewf/misc/30-chop- modified-dallas-pots-exercise- program
Gradual progression of RPE and allowing for recovery days
CHOP: RPE 2-4/10 for 1st 3 months before increasing 1x/week to 5- 8/10 briefly
START STRENGTH LAYING DOWN
Gradual progression to upright exercise

18. POTS – retraining the nervous system
Autonomic NS isn’t regulating well, so need to THINK about regulating
Make slow, gradual transitions from laying to upright activity
Make the blood flow better with isometrics before you move
Squeeze the legs, the gluts, the abdominals, the hands
If you feel revved or tired, lay down 2-5 min to give the nervous system a break by providing a low sensory environment with the legs up
When revved or tired, or just starting retraining, wear compression garments 30-40mmHg waist high, or socks and abdominal binder?
Drink isotonic fluids (electrolyte water) to increase blood volume
Coffee in the am to get going, Dramamine if overstimulated/revved
If revved start exercise with less warm up needed, if sluggish start slow

19. Neuro PT and Pain Management
Hypothesis that chronic pain/inflammation acts on tone the way CNS damage does – think of Pain rehab as Neuro rehab
When normal: Flexor (Fight or Flight)/Extensor (Rest Digest) tone is balanced
CNS injury, fear, or pain takes away balance of extensors/posture muscles and leaves increased tone in flexors/fight or flight muscles: calves, hamstrings, psoas, pectorals, lats, levator scapulae, suboccipitals
Engage posture muscles/inhibit large muscle overactivation from fight or flight – Earl Pettman, PT’s Extensor muscle activation
Tibialis anterior, quads, gluts, kegel +TA, mid/low trap, external rotators, longus colli nod
Vibration can be used to reduce tone by stimulating large area of sensory cortex and pairing that with movement in people with CNS damage - Paul Cordo, OHSU researcher
Caution for whole body vibration from occupational stressors – increased disc herniation and back muscle fatigue – Keer and Grahame

20. Neuro PT Mobilization of the nervous system – NOI Group/David Butler
Nerve flossing long before any tensioners
External focus exercises – put a laser on it and draw on the wall
Exercise classes – Yoga, Thai Chi, Chi Gong, Ai Chi, Aqua aerobics to associate movement with meditation or positive sensation
Breathing education – diaphragmatic breathing increases tone in postural muscles, can assist with reducing anxiety, adrenaline
Meditation – guided relaxation technique to reduce tone, reduce pain, reduce fight or flight, mindfulness meditation to reduce arousal cycle

21. Equipment
photo thanks to: Annette Lovejoy

22. Women’s/Men’s Health Issues
Uterine, bladder prolapse, rectal prolapse is common
Incontinence – pessaries are braces to support bladder/rectum
If bladder weirdness, think tethered cord
Rectocele worsens due to constipation and straining, leads to increase in inflammation in gut and infection of bladder, yeast infections
Teach proper toileting techniques – squat position to relax pelvic floor, big belly, deep breathing
Pelvic pain associated with involuntary guarding to gain stability of pelvis, organs
Chronic inflammation and infection can lead to interstitial cystitis (MCAD of the bladder/urethra), vulvodynia
Erectile Dysfunction associated with low blood pressure and vascular insufficiency
Hyperarousal associated with malfunctioning Autonomic NS

23. Lifestyle Modification
Avoid showing off your bendy tricks (take a picture)
Sleep is King
The Gut is Queen
Exercise in normal range?
Study on knees showed improved proprioception when exercising through the full ROM (including excessive range)
Pacey et al 2014

24. Lifestyle changes Promote regular, aerobic fitness
Promote fitness support with strengthening, gentle stretching, and proprioception exercises
Promote postural and ergonomic hygiene especially during sleep, at school, and at workplace
Promote weight control (BMI < 25)
Promote daily relaxation activities
Promote lubrication during sexual intercourse (women)
Promote early treatment of malocclusion
Use of compression garments, bracing, assistive devices as needed
Isotonic fluid intake

25. Lifestyle changes continued
Avoid high impact sports/activities
Avoid low/high environmental temperatures
Avoid prolonged sitting positions and prolonged recumbency
Avoid sudden head-up postural change
Avoid excessive weight lifting/carrying
Avoid large meals (especially of refined carbohydrates)
Avoid hard foods intake and excessive jaw movements (ice, gums, etc.)
Avoid bladder irritant foods (e.g., coffee and citrus products)
Avoid nicotine and alcohol intake
Heidi Collins Diet 2015 – supplements for poor absorption

26. Social: Goals to get out and be active again
Exercise/rehab can be a fun, social outing – socialize!
Exercise classes
Support groups
Fibromyalgia support group
portlandfibrocfs.com
Ehlers Danlos Support Group
International Organization
International EDS Online Support

27. Psycho: Understanding pain reduces pain perception
Realizing that many health issues are linked by one common cause reduces worry
Patient education
Family education
Cognitive Behavioral Therapy – learn to respond differently and thereby change the neurochemistry, work on the doing too much/too little cycle, address fear of movement/exercise/fear of permanent damage with exercise
Pain is Depressing (chemically)

28. Schools require psychology
Pacing, self care
Explain pain
Meditation
Mirror Box therapy
Distraction and sense of humor
Make it fun! You and your patient will benefit!
Active listening skills, paraphrasing

29. It’s Not Just in Your Head – Explain Pain
It is very rare that I have a patient that is lying about their pain. You must assume the complaints are legitimate and problem solve to discover their cause.
- Iris Wolfe, PT

30. Other Providers on the Team
Massage: Bowen technique, Neuro integrative Therapy, MFR
Reiki, Acupuncture, other Naturopathic rx
Spiritual and Religious
Psychologist
MD for medication and medical management, but who is in charge?: Primary care, Pain Doc, Physiatry, Rheumatologist, Geneticist, Orthopedist, Gynecologist, Cardiologist, Opthamologist, Psychiatrist?
Caution for Quacks- people will spend any amount of money to be rid of pain and waste a lot on unproven practices, providers, and supplements

31. References Butler, D and Moseley, L, Explain Pain
M. Castori, I. Sperduti, C. Celletti, F. Camerota, and P. Grammatico, “Symptom and joint mobility progression in the joint hypermobility syndrome (Ehlers-Danlos syndrome, hypermobility type),” Clinical and Experimental Rheumatology, vol. 29, pp. 998–1005, 2011.
M. Castori, “Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations,” ISNR Dermatology, Volume 2012 (2012), Article ID , 22 pages.
M. Castori, S. Morlino, C. Celletti et al., “Management of pain and fatigue in the joint hypermobility syndrome (a.k.a. Ehlers-Danlos syndrome, hypermobility type): principles and proposal for a multidisciplinary approach,” American Journal of Medical Genetics A, vol. 158, pp. 2055–2070, 2012.
Cincinnati Children's Hospital 2014 Identification and Management of Pediatric Joint Hypermobility- In children and adolescents aged 4 to 21 years old. Evidence-Based Care Guideline for Management of Pediatric Joint Hypermobility, Cincinnati Children's Hospital Medical Center, Guideline 43: 1-22

32. References Con’t
A. J. Hakim and R. Grahame, “A simple questionnaire to detect hypermobility: an adjunct to the assessment of patients with diffuse musculoskeletal pain,” International Journal of Clinical Practice, vol. 57, no. 3, pp. 163–166, 2003.
A. J. Hakim, R. J. Keer, and R. Grahame, Hypermobility, Fibromyalgia and Chronic Pain, Churchill Livingstone, Elsevier, Edinburgh, UK, 2010.
Hakim, Keer and Grahame Hypermobility, Fibromyalgia and Chronic Pain 2010
Keer, Rosemary and Grahame, Rodney Hypermobility Syndrome – Recognition and Management for Physiotherapists published by Butterworth Heineman, Elsevier Limited 2003
R. Keer and J. Simmonds, “Joint protection and physical rehabilitation of the adult with hypermobility syndrome,” Current Opinion in Rheumatology, vol. 23, no. 2, pp. 131–136, 2011.
Kemp et al A Randomized Comparative Trial of General vs Targeted Physiotherapy in the Management of Childhood Hypermobility. Rheumatology :
Knight, Isobel with Hakim, A A Guide to Living with Hypermobility Synrome: Bending without Breaking 2010

33. References Con’t
Pacey et al Proprioceptive Acuity in Knee Hypermobile Range in Children with Joint Hypermobility Syndrome. Pediatric Rheumatology, 2014,12:40
Pocinki, Alan G, MD, PLLC Joint Hypermobility and Joint Hypermobility Syndrome
Sahin et al Evaluation of Knee Proprioception and Effects of Proprioception Exercise in Patients with Benign Joint Hypermobility Syndrome. Rheumatology International 2008; 28:
J. V. Simmonds and R. J. Keer, “Hypermobility and the hypermobility syndrome—part 2: assessment and management of hypermobility syndrome: illustrated via case studies,” Manual Therapy, vol. 13, no. 2, pp. e1–e11, 2008.
J. V. Simmonds and R. J. Keer, “Hypermobility and the hypermobility syndrome,” Manual Therapy, vol. 12, no. 4, pp. 298–309, 2007.
Smits-Engelsman et al Beighton Score: A Valid Measure for Generalized Hypermobility in Children. Journal of Pediatrics 2011;158:119-23
Tinkle, Brad MD, PHD (2008). Issues and Management of Joint Hypermobility. A Guide for the Ehlers-Danlos Hypermobility Type and the Hypermobility Syndrome. Left Paw Press 2008
2016, 2017 Ehlers Danlos International Symposium Current Recommendations for Evaluation and Treatment of Ehlers-Danlos Syndrome presented at the Ehlers Danlos Society National Conference July 2016 and to be published March 2017

34. 4475 SW Scholls Ferry Rd, Suite 258
References Con’t
Facebook: Official Oregon Area Ehlers-Danlos Support Group, Fibromyalgia Support Group Portland
(UK) (CL)
Dysautonomia information
Mobilisation of the Nervous System – NOI group course
North American Institute or Orthopaedic and Manual Therapy (NAIOMT) courses
Heather Purdin, PT
4475 SW Scholls Ferry Rd, Suite 258
Portland, OR 97225
Ph:

35. Questions?
EDS Hypermobile Type is a Heterogeneous Syndrome with varying presentations and intensities. Any body system that relies on collagen is suspect.