Why do I have to be the expert??
I've been dealing with pain and hypermobility my whole life. I finally start to figure out that's its hEDs within the last few years. But why do I always have to be the most informed person in the room? Every PT, ortho, pcp, and specialist all seem to have some vague knowledge of hypermobility but never enough to actually HELP ME!! sure fine, whatever, this is not a well known condition in some fields but come on!!!! How am I supposed to ask questions and get help if I have to spend half the appointment convincing them that this is real and that I have it and the other half explaining that I've already tried all of the usual solutions and that they didn't work.
I'm just so frustrated today because I have to find a new PT again and no one local seems to take my insurance and know how to treat hEDs patients. And my latest MRI shows yet another labrum tear (in my shoulder this time, I already had surgeries for torn labrums in both hips in the last 8 months). I just feel like I can't catch a break and no one is knowledgeable enough to help me. I'm so grateful a communtiy and resource like this exists so at least I know I'm not alone.