Feeling Stuck with Severe ME Diagnosis

Have you read about pacing? That's really the only thing I'm doing to improve my symptoms. It's a very, very slow process of healing, and I have been setback many times from accidentally overexerting myself. I also try to eat every few hours rather than eating a few larger meals. Seems to boost my energy a smidge.

Definitely feeling stuck as well. Seems to be getting worse over time. I’ve read that adhd stimulant meds can be helpful, but I have to be cleared by a cardiologist for POTS first, since stimulants can be hard on your cardiac system, and the only specialist is scheduling out in May. So it feels like I’m just waiting and worsening…

I'm over a decade in (and I'm only 33), after a head injury and covid I became much more severe. I'd spend a little more time going into details, but I'm exhausted and heading to bed. Just wanted to make myself known to possibly comment at a later point! 😅

oh wow thank you for the advice its the first time i heard of this. i have issues with thrombocytopenia and leukocytosis so this sparks an interest for sure. What kind of testing should I ask for? Is there a specific name for it?

i felt similarly for a long time, and in my experience it’s something that i live with that comes and goes. i found out i had the severe form of the MTHFR gene variant, which can cause ME, depression, anxiety.. but is hallmarked by things like thrombocytopenia, spina bifida, and sometimes autism. after being supplemented properly for this all areas of my life were steadily improving. i know my experience is very specific but if there’s any chance at all you can relate too i’d get a generic test done if u haven’t already! especially if you relate to the other ailments listed. ask your family too since it is genetic, or just read up on it. a lot of people have the variant but the severe form is rarer and causes more issues. good luck!! <3