Just joined, hoping to find some people with severe ME who can relate. Is there anything more to do after diagnosis? It feels as if I'm at a stalemate right now. I've suffered through 2 years of non-stop, traumatic testing, and now that I've got my diagnosis I don't even know where to go from here. I've pleaded for direction from my pcp, psychiatrist, and NOBODY knows what to do with me. Any advice?
Myalgic encephalomyelitis/ Chronic fatigue syndrome (ME/CFS)
Anxiety (Including GAD)
Purpura & Other Hemorrhagic Conditions
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
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'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! 😅
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…
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.
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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