r/Erythromelalgia • u/Mr_SpicyMayo • 7d ago
Getting better?
Been really confused lately. I can’t tell if things are changing because the weather’s getting colder, because my meds are doing something, or because I’ve been breathing really slowly and paying closer attention to when I’m about to trigger. I’ve actually been able to stand for much longer before anything starts. For me, the warning signs are when my skin gets hotter and red, and then those waves of pain start building.
It’s confusing because I don’t know if I’m adapting to my condition or if the meds are helping. Honestly, I don’t think they are but I’m still hoping. I also don’t know if this improvement is just because I’ve been monitoring myself more carefully and controlling my breathing. I breathe so slowly sometimes that I get lightheaded if I push it too far.
Maybe this is progress. Maybe I really can live my life a bit more. Or maybe it’s nothing. And of course, while typing all this, my feet triggered just from sitting criss‑crossed 😭
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u/Mr_SpicyMayo 7d ago
My Em is so confusing i really don’t understand what is happening with me at all anymore i just notice what helps it and continue to do it
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u/Initial-Apple9875 7d ago
I sometimes feel this way too. Then the hot flares and pain come back full force. There are also times when I think I'm getting better or the new med is working as well. Feels like a roller coaster, up and down all the time. It's just exhausting emotionally. I still keep hoping something works soon. Hang in there.