Talonflame

joined 1 month ago
[–] Talonflame@lemmy.cafe 1 points 1 month ago

I've had so many blood tests done when they were trying to figure out what was wrong with me pre POTS/EDS/CFS diagnosis

[–] Talonflame@lemmy.cafe 3 points 1 month ago

You described it so well! That's exactly how I feel. I understand how frustrating it is, especially when it happens in public because people make so many assumptions. Thanks for the kind words ❤️

[–] Talonflame@lemmy.cafe 5 points 1 month ago (3 children)

I have, but doctors don't suspect it. I find my brain fog correlates to episodes of bad circulation/low blood volume, in that it gets worse whenever my blood volume or circulation is low/bad. How did they diagnose you with MCAS and is it easily treatable? Thanks

[–] Talonflame@lemmy.cafe 5 points 1 month ago

It really is. I'm aware of every mistake I'm making but it's like trying to move my fingers rapidly when they're too cold, I can't stop it. Thanks for telling me about the ME community, I'll check it out!

[–] Talonflame@lemmy.cafe 1 points 1 month ago

That's messed up. I can feel your frustrations and I have the same thing too. My heart stopped during a tilt table test and I've passed out several times just from standing. I have to do so much just to maintain a low normal blood pressure.

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