I just found this community recently through the youtube videos, and it’s given me a fresh dose of optimism! I was only diagnosed with EDS-Hypermobility during this past winter, but it had been a LONG time coming. 🙂
Now, at least the pieces are coming together. I’d had bizarre medical issues my entire life … dislocations, muscle weakness, chronic fatigue, chronic joint/muscle pain, headaches, unexplained anaphylaxis, poor temperature regulation, inability to run a block without seeing stars… you get the picture! :/
Anyway, it looks like EDS + MCAD + Dysautonomia are the gang of culprits. It’s been such a relief to know that I’m not just lazy, crazy, or a weakling. And unlike the rheumatologist who diagnosed me, I don’t agree that “there’s nothing to be done about EDS”.
So anyway, hi! I can’t wait to learn from all of you. 🙂
Hi Colin and Welcome! I think you’ll find this group of folks knowledgeable and extremely eager to help. And I agree with you 100% — “There’s nothing to be done about EDS” — In my experience, this is VERY far from the truth. Optimism abounds. 😉