EDS and Physical Therapy Treatment

We have heard before from some of our expert therapists on the basics of PT and EDS/HSD (Physical Therapy and Ehlers-Danlos Syndrome). In this post we have another one of our experts share insight on the importance of finding a Physical Therapist who knows about EDS/HSD.

As a Doctor of Physical Therapy (PT) who has consulted and treated hundreds of people with the diagnosis of hypermobility spectrum disorder (HSD) and EDS, I don’t know how many times a patient has told me that physical therapy treatment flared them up, so they had to stop.  I will tell you – it IS possible to exercise, get stronger, and better manage symptoms.  Often joint hypermobility is not accounted for by a PT who is not knowledgeable about EDS/HSD – understandably they might not realize that there are certain modifications that are needed with EDS/HSD.  These diagnoses are very rare, so in many clinics they are seen infrequently, and when seen, there is insufficient knowledge and experience with working with hypermobility in a patient.  Hypermobility can be recognized and accounted for, even without a true diagnosis of EDS or HSD.  One of the most important components in management of these conditions is a properly dosed therapeutic exercise program that can help someone get stronger and have better control of their joints and movements.  This is a lifetime endeavor with ups and downs, which is why it is so important to have a physical therapist with sufficient knowledge of these conditions as a partner in their care for the long term.  When you see a Doctor of Physical Therapy (PT) at Mayo Clinic, we will help equip you with knowledge about how best to start exercising as an individual since so many people with hypermobility can be different.  You can then take this to a local PT as a guide to help you progress and modify that plan of care.  This doesn’t have to be multiple times a week forever, but after a few weeks of 1-2 sessions a week, most patients can be seen for follow-up every few weeks, months, then as needed, or perhaps on a semi/annual basis. We recommend that you develop a relationship with a PT whom you trust so that you can consult on future issues as they arise.  In the meantime, new research is becoming available all the time for and by physical therapists here and outside of Mayo Clinic (Masterclass: Hypermobility and hypermobility related disorders) that can be very helpful for understanding some of the considerations for working with someone with hypermobility or EDS.

Author: John Leschitz, PT, DPT, OCS