google is really bad so it's hard to find info. so a few years ago I got physical therapy for my shoulder pain and issues. I learned that i'm hypermobile at that time when the doctor evaluated me. I had seen things about eds because I was looking at autism stuff online and it's very common for us to be hypermobile. so I remembered that and mentioned it to the doctor. she looked it up on her computer and then asked a few questions and said I cant have it because no one in my family does (that I know of. I said I dont know. no one in my family goes to the doctor unless theyre dying or severely impaired. we are poor), don't have any confirmed heart problems, and I scored a 4 on the beighton test that I dont even know if she did properly. she didnt seem to really know anything about it. "it says here you are required to have this and that (genetic forms symptoms) so you cant have it" she diagnosed me with "general hypermobilty," not even an actual condition. the closest condition is hsd, but I didn't even get that. I researched about heds after that and I think I meet the symptoms! if it was hsd, i feel like I have more issues than that symptoms listed for that. like hsd, from what I can tell, doesnt include stetchy and soft skin? I cant find anything that differentiates very well. some things say the difference is ONLY beighton score and share everything else. others say hsd only has hypermobilty and sometimes minor pain symptoms and nothing else. but like I said, google is so bad these days, so it's hard to find anything. but I have very stretchy and soft skin. i've been told my skin feels like a baby's and people are surprised I dont put on lotion often (sensory issues with it) and I learned this isn't normal:
I always thought this was normal but when i do it, people freak out and tell me how gross it is and say stop doing it! so uh. is it possible I DO have heds and that doctor just didn't know anything? I see a geneticist in March. but they also dont deal with heds, but still scheduled me for some reason despite it not being on their list of things they evaluate for. but my doctor sent a referral. so we will see what happens. probably wont do anything for me. but maybe they can refer me to someone who knows about heds, since i cant find anyone who does. because I know it's not a genetic one. no one in my family has a genetic eds. I have family with confirmed hypermobilty issues like me (a cousin and my sister, maybe others i dont know about), but thats it. no diagnosises.
I just wanna know whats wrong with me so I can get proper care or help or something and know what I can and cant do to avoid hurting myself again instead of getting brushed off as "youre just a little hypermobile, exercise more and it will make it better" 😭 but when getting a proper evaluation is so hard, i'm not too hopeful.
