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Newsfeed PostNewsfeed Post in blog Ehlers-Danlos Syndrome
Research Updates II Sep 10 8:53pm | By Brii Sessions, EDS Moderator (@briisessions)Comment receiving replies
It is so confusing have all the symptoms of HSD but none of
My doc or therapist say the words. I guess bc I’ve had so
Many other issues- shattered femoral head, TKR, and back issues. But now that nothing seems to help and with new groin pain and widespread dynamic pain I know this is what I have.
Is it important to get the label? Seems like my care would be positively affected with diagnosis.
I appreciated the Taichi/ Qigong. But it’s so disappointing that for over 16 years Ives probably only been exacerbating my issue with my PT and exercise program.
I would
Love to know what therapies my PT should be doing? All stabilization? And can you tighten any joints with prolotherapy -
SI joint? My possible contributor to my groin pain?
IDK a I just feel like I’m in kindergarten and need to know everything including how to educate my practitioners. Thx
Replies to "It is so confusing have all the symptoms of HSD but none of My doc or..."
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There are many online resources giving examples of common exercises that help improve hypermobility. The keys are to go "low and slow" and improve the stabilizing muscles (core, glues, hips, rotator cuff, etc). Low impact exercises where you focus on quality of movement through a small or mid-range of motion are usually helpful. Pilates, either on the mat or with the Pilates reformer are helpful, pool exercises. tai chi, etc. Basically anything you like doing, doesn't cause a prolonged pain flare-up, and is gentle on the joints.
You can do a search for exercises for EDS or hypermobility, and many examples come up. If you're looking more to understand the underlying concepts, Jeannie di Bon's YouTube channel has a video series that can be helpful. I also like the Actively Autoimmune website (she is a physiotherapist with lupus, EDS and POTS); she's in Australia but offers online classes and exercise coaching that can provide a starting point. Stability Flow is something I read about here and look into. She used to have an ebook available with exercises that I thought was amazing, but I don't see it on her website anymore =(
I'm not sure if you noticed this post on the blog with some guidelines for exercise; I would say the recommendations are consistent with what my PTs and I settled on, especially in regards to how to handle pain: https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/exercise-for-heds-and-hsd/
It is frustrating to not have a "label" or diagnosis. Sometimes it can feel invalidating. But the unfortunate reality is it is very difficult to get a diagnosis because providers are limited. If you feel confident your medical team has ruled out the most serious and life-threatening conditions, it's okay to try to look at options for how you can improve your pain. If I had waited the 3 years and done nothing while I was going from provider to provider to get my inflammatory arthritis diagnosed, I might not have made as much progress as I've made. And oddly, HSD was the last of the diagnoses to fall into place.
One good thing is that many of the principles of physical therapy or comprehensive chronic pain management are the same or very similar, regardless of the condition.