Replies to Oh wow this is so great to finally read. I have not been completely diagnosed but…

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Swimming for EDS and HSD Jul 12, 2023 | By gimblogger09 (@gimblogger09)

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@suecutuli

Oh wow this is so great to finally read. I have not been completely diagnosed but after 16 1/2 years of chronic pain I’m getting closer. I have HSD but it’s like pulling teeth to get a practitioner to say it. My PCP said I had a connective tissue disorder and sent me to a Rhemy - he said I didn’t have Lupus but was hyper mobile. And sent me on my way. My PT s are totally supportive but say there is really nothing to be done expect stability exercises. It’s been such a long road and such a painful one that I am filled with tears writing this. Everyone, and I mean everyone in my life has had a diagnosis and wondered why I just didn’t get well. It wasn’t until my daughters classmate in Grad school alerted me to EDS as she did her thesis on it that I even know it existed. None of my myriad docs and therapists have used the words hEDS, EDS or HSD until I did . God I am behind frustrated and don’t even know what I should be doing next! Thanks for posting- it’s also the first post I’ve seen on this platform???

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Replies to "Oh wow this is so great to finally read. I have not been completely diagnosed but..."

emo | @emo | Jul 9, 2023

Oh wow, welcome if this is your first post you’re seeing?!

I’m so sorry this happened to you, and you haven’t had answers or maybe even an affirmation. But I’m glad you found your way here, if this helped you. The EDS/HSD blog is really helpful for a place to start, and so is the EDS Society: https://www.ehlers-danlos.com/

There are also many bloggers and PTs who host sites about EDS, POTS and hypermobility.

I believe the EDS society has a provider directory on their website.

It’s beyond frustrating that so many providers (rheumatologists, PCPs, orthopedists, etc.) consider EDS and HSD (and fibromyalgia and every other chronic pain condition it seems) “outside their scope of practice.” In my experience, PTs are most likely to be familiar with the physiological aspects of it, yet they don’t have authority to diagnose it. They can send you to a physician…but odds are they won’t feel “comfortable” diagnosing it!

I could rant about that forever. Thankfully, there are a lot of online resources you can find if you look up hEDS and hypermobility. If physical pain is your primary symptom, stability exercises can go a long way to improving them. You kinda need a PT who’s experienced with hypermobility or willing to do the research on best practices though.

If you feel you may have other systemic symptoms related to hypermobility, it is even harder to find a provider. I’m not sure how much you might want to pursue further evaluation, but in my area the closest EDS clinic wait list was 2 years. I waited about 9 months to be seen at Mayo Jacksonville’s clinic.

But there are options, and there is treatment, and you can access it or learn a lot even without that. I think deciding what to do next depends on what you feel is most important, which symptoms if any you’re interested in addressing.

Where are you located? You might be able to find an online PT with experience with hypermobility too.

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