• Matthew Preston

What can physiotherapy offer EDS patients?



Who: Dr Jane Simmonds (Physiotherapy Lead, London Hypermobility Unit; Post-Graduate Lead: Great Ormond Street Institute of Child Health, University College London; Chair, Ehlers-Danlos Society International Physical Therapy Working Group)

What: Ehlers-Danlos Society Learning Conference - Patient Day

Where: Macquarie University, Sydney

When: 7 December 2018


These are my notes from Dr Simmonds' talk. I have tried to be as true as possible to what was said at the conference - please excuse any errors.

Physiotherapy is the mainstay of EDS treatment but patients with EDS need to be treated with special care. It is critical that the physiotherapist learns how to handle EDS patients.


Use this article as a guideline: The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome (Engelbert, et al, American Journal of Medical Genetics 2017)


Keys to successful physiotherapy:

  • Individualised: Every EDS patient is different, with different problems and varying severity, so each person needs to be assessed individually

  • Self-management goals: Empowering the patient to feel in control of their condition, NOT the condition controlling them

  • Clinically reasoned, goal-directed functional restoration programmes, including education, MDT, adaptations

  • Stratified management: spectrum from mild to severe; each patient varies and each patient individually can also have a wide range of severity (eg, okay during the last visit but this week much worse)

  • Start very slowly and gradually increase: EDS patients tend to need to start and progress much more slowly than typical patients to avoid injury. Could start with as little as one or two shoulder rolls.

What can physiotherapy offer EDS patients to help improve life?

  • Education

  • Acute management

  • Restore function - working toward goals

  • Address weakness

  • Address tightness

  • Address compensatory movement patterns

  • Address poor proprioception (common in EDS)

  • Improve fitness

  • Manage pain and fatigue

Simple/early physiotherapy

  • Episode(s) of acute musculoskeletal injury, sprains, subluxations, dislocations (with minimal or no trauma), overuse, misuse

  • Rest, ice, compression, elevation, electrotherapy, tape, support, reassurance, exercise, time, education, prevention

  • 6-week graduated exercise intervention

Intermediate physiotherapy

  • Coordination problems, recurrent episodes of pain, series of episodes at different sites, subluxations/dislocations

  • Important to prioritise your issues: what are your most important things in order to be more functional and enjoy life? (the physiotherapist cannot treat everything in one go)

  • Requires perseverance and tenacity: the condition of an EDS patient will not change overnight

  • Trust between physiotherapist and patient is crucial (partnership)

  • How to tackle setbacks and barriers: pain, fear of injury, fatigue

  • Individual plan: movement control = graded strength. Start in non-weight bearing and work up gradually.

  • Pilates is recommended

  • Weekly or fortnightly sessions with physiotherapist but daily exercise at home

  • Even on bad days, movement is key (eg, do core exercises lying down if unable to walk that day)

Complex, long-term physiotherapy

  • Chronic, longstanding, severe, unremitting pain with profound deconditioning/ comorbidities

  • May need to start extremely slowly (hydrotherapy?)

Keys for the EDS patient to remember with physiotherapy

  • Go with realistic expectations - be ready to change

  • Provide a clear, concise history and a functional problem list

  • Set functional, realistic goals

  • Work as a team with the physiotherapist

  • Stay hopeful and calm

  • Persistence is key - don't give up

Other key articles






An American physiotherapist, Kevin Muldowney, has written a physical therapy protocol for Ehlers-Danlos Syndrome patients that can be a good place for physiotherapists to start. He also provides a webinar on his website: Muldowney Physical Therapy

Whakatane, Eastern Bay of Plenty

New Zealand

© 2018 by Matthew Preston