Hello Everyone, I am new here. I was diagnosed by my PT as EDS hypermobile. My doctor did some tests, they all came back normal so she agreed with the PT's diagnosis. Then I never heard anything more. I've been trying to get ahold of her. Nothing. So, safe to say I've been feeling VERY overwhelmed and alone. I journeyed down the rabbit holes... all of the rabbit holes. I was on inspire on reddit, on all the medical websites and journals. I found the negative posts that really make this seem like a sentence to a lifetime of despair. Then I found some positive blogs that make it sound totally manageable. Then I found you guys. Thank you Jeannie for taking the time to reply to my email and recommend I come here. I so appreciate you! Guys, I'm crying as a write this, I don't know if it's the fear finally getting the best of me or the hope that was missing since getting the diagnosis and being basically abandoned by my doctor. In the reddits and the message boards it sounds terrible. However, I 'only' have knee pain. I tore cartilage in my knee and was told during the pandemic to rest it, I'm young it will heal. However, I didn't rest it, I over did it and the other knee hurt too. Finally this year after they started catching again when I jumped back into cross fit workouts at the end of December, I admitted I needed help. My doc didn't do any tests just referred me to PT. My PT took about 10 minutes to diagnose me. I'm hypermobile in pretty much every joint. What is distressing me is that I don't feel 'hurt'. My knees, yes, but also sometimes no, the rest of the things, back pain pfft who doesn't have that... right? But now I'm so in my head. I know that I didn't change pre diagnosis to post diagnosis but now I have this terrible fear that it's just going to hit, I'll be stiff won't want to move, all the horrible stories I seen on those message boards. So, my questions for you guys and please please answer, do you have excruciating debilitating pain every single day? Can you keep a normal job? Did the pain just hit all at once with no forewarning? Is it live with able if you do exercise and maintain a positive outlook and attitude? Please please help me understand what this is? I'm very scared and feeling horribly alone. Thank you, Mandy

Posted by Deleted (6ec5089c) at 2023-02-05 16:26:45 UTC