








Your toughts before I pay for private hc
I'm so sorry you guys must get posts like this everyday it has to get so tiring but I want tge opinion of educated people on the matter before I have to pay from private because my primary care doctor thinks I'm dehydrated
Hi, I'm 18 and have had knee pains everyday since I was like 4. It started as knee pain on ling walks and everynight when I laid in bed. Now if I stand for more then 10 minutes at a time my knees, ankles, hips and lower back hurt, then if I don't sit down it spreads to my shoulders. Same goes if I sit wrong but I'll also get elbow pain from that. When swimming I feel my elbow wanting to fold backward from tge water resistence.
What has been done- I have been seeing a podiatrician since I was like 7-8, I wore hard sole things? Prostesis? I'm so sorry english is not my first language. At 16-17 he announced he could not help me further, he tought it was neuromuscular because "it's like I'm using too much muscle to walk, like my legs are on overdrive all the time. It makes my muscles stiff and they pull on my rotula, which would explain the knee pain and from there everything my ankles, hips and lowerback can't work properly" but that doesn't explain my shoulders or elbows. Now why standing hurts worse then walking. He refered me to a pt whom I've been seeing for over a year now. It helped at first but now I'm better then I was withbut getting better then that, everything still hurts. My knees have been x-ray'ed, they rulled out juvenile arthritis, and we have done tones of bloodwork and everything is normal. I think one element was strangely raised but not beyound fair range and can't remember what it was, my doc won't look into it further since it doesn't worry him.
Family history- Two older family members where diagnosed with fibromyalgia years ago, which I suspect may have been a misdiagnosis of EDS since it used to be misdiagnosed as fibro a lot. Everyone on my mom's side has mysterious hip problems amd is sensitive to dislocations. My mom also has shoulder problems. This is also the side with two diagmosed relatives. My cousin on that side can pop his shoulderblades out, and my younger sister can fold her back over herself so her toes reach below her chin. She used to sleep on her ass and forehead, with her back folded over herself. Creeped my mom out. She also keeps dislocating every part of her body.
Latest appointment with my primary care doctor- When I brought up that I suspect I may have hEDS, he first of all asked why I tought I was sick as if someone fainting for no appearant reason, having morning sickness for no appearant reason and having daily knee pain since I was 6 was not enough of a sign smt is wrong. Then said I'm dehydrated and need to drink more water and that we'd talk again after that. Then he had to look up what hEDS was, and then he did not do the beighton test before dismissing me. He did his own little test where he palpated my tendons or ligaments idk with his thumb and determined I was not hypermobile.
I cannot touch the ground with my palms, last time I tried I could do it with my knuckles. My pinky does not fold back 90°. Attached are some pictures of my joints in the most extended position I could get them in but I'm sore this morning so my flexibility is slightly impaired.