So, after a long, long, long time being extremely symptomatic but having various professionals and specialists imply or outright accuse me of being a hypochondriac who spends all her time on WebMD's symptom checker (which is not true; I use google scholar and actually like, talk to my GP and stuff), I started in with a physical therapist for the frequent partial dislocations of my shoulders (which, LOL, ya think?). I brought it up in an appointment, and got to demonstrate the fact that I pass the beighton score with flying colors. Along with a long, long, long list of all of the comorbid conditions I have that were previously thought to be unrelated to each other that all just happen to also be associated with EDS, my PT told me "yeah, you're right. That's EDS."

I still don't have a formal diagnosis because of a huge snarl of red tape, and there's not that much more my PT can do because we're already doing the kind of physical therapy you do for EDS-3--namely trying to help stabilize the joints by strengthening the muscles around them with gentle, careful exercise. But, as my PT told me, "there's tremendous value in just knowing why all of this is going on."

All of this aside, I do want to pursue a formal diagnosis--I'm twitchy about this kind of thing. For now, though, I'm just reeling over that fact that I finally have outside confirmation that's more substantial than "well, it's a strong possibility, but I can't give you any leads on following up or confirming."

And here I am, with my horrifying jelly bones, constant agonizing pain, probable misdiagnosis of fibromyalgia, and riding the joy of being listened to and getting proof I'm not just somehow unconsciously making crap up.

All of this made me really happy about Shanti. :3

My ex-boyfriend's ex-wife has EDS. (I know how weird that sounds, but there's no bad blood between us.) I follow some fellow spoonies on instagram and I actually started following her before I realized it was her. She is super nice, though, and we've talked a couple times since then. She posts a lot of stuff about EDS and she's talked about how hard the red tape is with doctors.

It's really hard to find a doctor that will listen to you. I am actually about to switch doctors because the one I am seeing now is not listening to my feedback on the regimen she gave me. Her solution is to up the dosage every time I see her. It's really frustrating because I am telling her that the meds are not working for me, but she won't try anything else.

Hey! It doesn't sound weird at all. I'm glad you could make a connection with someone; that's how I figured it out. I'm not on tumblr anymore, but the spoonie community was really valuable for me when I started getting sick and first had to deal with self-important doctors who thought they knew my body better than I did, :|

I'm sorry to hear you're dealing with that same thing now, though. My current doctor is amazing, but I went through a lot of duds before I found her, and I vividly remember how much it sucks. I really hope you find someone who listens--I'll send good vibes in your direction!

I am actually in a very similar situation. Just replace EDS with Asperger's. I'm almost thirty and have never had an official diagnosis. Though I suppose part of the reason why is the nature of folks on the autism spectrum; i.e. difficulty reading social cues and communicating. That's a maximum of 25% of the problem by my estimation, though. I'd say at least 50% is because my first mental health professionals all the way back when I was eleven or twelve never put the pieces together, and thus the succeeding ones didn't really consider it because it wasn't in my file. The rest is my atypical of Asperger's affective empathy; I get so upset when other people are hurting that it makes it difficult for me to function.

TL;dr: It sucks when doctors are closed minded. And red tape is awful. How the ancient Chinese thought that bureaucracy could be even slightly how heaven works boggles my mind.