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?
Restore function - working toward goals
Address compensatory movement patterns
Address poor proprioception (common in EDS)
Manage pain and fatigue
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
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
A randomized comparative trial of generalized vs targeted physiotherapy in the managment of childhood hypermobility (Sue Kemp et al, Rheumatology 2010)
Exercise in children with joint hypermobility syndrome and knee pain: a randomised controlled trial comparing exercise into hypermobile vs neutral knee extension (Verity Pacey et al, Pediatric Rheumatology 2013)
Interdisciplinary pain management improves pain and function in pediatric patients with chronic pain associated with Joint Hypermobility Syndrome (Gadi Revivo et al, American Academy of Physical Medicine and Rehabilitation 2018)
Multidisciplinary treatment of disability in Ehlers-Danlos Syndrome Hypermobility Type/Hypermobility syndrome: A pilot study using a combination of physical and cognitive-behavioural therapy on 12 women (Trine Bathen et al, American Journal of Medical Genetics 2013)
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