So, after insisting that I did not have joint laxity/instability the first time my physical therapist (who specializes in chronic pain and always screen's for hEDS)- I finally realized that I do meet most of the diagnostic criteria. Some of the issue was me being taught to ignore the constant pain as a child and minimizing my symptoms. My PT and I reviewed the diagnostic criteria that she could check and I'm within 1 point of a diagnosis. She said that means we will definitely address hypermobility in our sessions. Next step is talking to my primary doctor about referral to a geneticist.
Even without the genetic conformation or an official diagnosis, EDS explains so much about my experience of pain, medical complications, mental health, and even dental issues. I know it wasn't all in my head before- but somehow that's so much more real to me now. It's not a defect in my character (which it never was anyway but sermed like because the tests always came back "normal"), it's a physical problem that makes the everyday so much more challenging.
Just so relieved to potentially have so many answers to questions I was afraid to ask. My symptoms haven't changed- but knowing more about why seems to make them a bit easier to manage.
Thanks for reading my ramblings. Looking forward to more information and a deeper understanding of what this condition means for me and how I choose to live my life going forward.
#HypermobilitySyndrome #PTSD #Fibromyalgia #ChronicFatigueSyndrome #PolycysticOvarySyndrome #OrthostaticHypotension #Migraine #longcovid #Dysautonomia