Physical Therapy and Ehlers-Danlos Syndromes

Sep 24, 2021 | Samantha Campbell | @samanthacmaa

There are many modalities patients can choose from for treatment of hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD). Overarching all of them, is the positive effect of Physical Therapy (PT) and Occupational Therapy (OT). We will focus here on PT, and in coming posts on OT, and exercise. For PT to be optimal in treating hEDS, and HSD, therapists providing the service should be experienced in managing these conditions. If not conducted properly, some PT may even be harmful. We are very fortunate at Mayo Clinic to have leading experts in the field of PT and EDS. If you have not yet had a chance to schedule a visit with PT, and need to do so, please contact our scheduling services either through your patient portal or by phone.

Some helpful tips for understanding the basics of PT as you go about activities on your own:

Avoid excessive end-range movements, either while stretching or doing yoga, as this can exacerbate your hypermobility.
When experiencing symptoms such as “tightness”, you can perform progressive muscle relaxation, and manually massage the areas of tightness. Also, meditation or mindfulness strategies can help to enhance muscle relaxation for decreased pain and muscle tension as well.
Only perform targeted stretching as recommended by your physical therapists.
Visit the Ehlers-Danlos Syndrome Society web page for more excellent videos, reading material, and patient resources on PT:
- https://www.ehlers-danlos.com/
Advice to find of specialist physical therapist back home, once you have completed your initial sessions with Mayo Clinic PT:
- Google/Bing search “find a PT” and search for your zip code
- Look for a therapist with specialty in EDS or hypermobility disorders and advanced credentials, and certifications such as Pilates certified PT, OCS, FAAOMPT, MTC. Therapists that are preferred are those that are residency and fellowship trained, experienced with chronic pain and fatigue, and have a good reputation locally.