Talonflame (she/her) @ Talonflame @lemmy.cafe Posts 2Comments 5Joined 2 wk. 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
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 ❤️
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
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!
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.