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Hi everyone,
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. 🙂
-Colin
Hi everyone,
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. 🙂
-Colin
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. 😉
I am tired of being told there is nothing you can do about it too. If the doctors were in our shoes and saw what it does to us and our families, maybe then they would care. All they have to do is spend 5 minutes with you and send you on. I even had one doctor tell me that I was too much for him to handle and not to come back. It was the first appointment I had with him and I had spent hours filling out his paper work. Doctors no longer care, and see us as a liability. I had doctors tell me that they knew I had something wrong, but it was too much work for them. I have been passed around from one doctor to another.
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