Pretty wild, because as of right now I dont fit the traditional markers to get my genetic testing paid for. Im hyper flexible in over 75% of my joints and fit a crazy amount of the symptoms, so much so that every PT ive ever seen since I was 12 for my body pains has said something.
I dont have hyper flexible elbows so I havent gotten a single specialist to listen lol
Yeesh and yeah, only rheumatologist Ive managed to see asked if I had any ideas what I had and I said I'm pretty sure its EDS and he just went "yeah seems like everyone is seeking an EDS diagnosis these days, its like its trendy or something." And then insisted I have fibromyalgia even after I said Id researched it already and it didn't fit how I experience my symptoms (plus its more of a diagnosis of exclusion to begin with). Gave me a nerve depressant medication which then could have killed me because it turns out I had undiscovered severe sleep apnea but my whole life I just self treated for the most part by sleeping in specific positions that supported my head properly.
This was nearly a year ago and I haven't heard from his office since :/
Good news is that apparently they're changing how EDS is diagnosed later this year and folks are feeling that its going to make diagnosis much easier/more streamlined. Fingers crossed.
The idea that its trendy is really hard to get out of doctors heads. If its not eds my body is still not the same as the average person, and id like to know that. After all the research ive done it really probably is though. I didnt know they were changing how it was diagnosed, so ya hopefully that helps.
53
u/PotterOneHalf Jul 25 '26
Yeah, we’re built different (incorrectly)