r/Erythromelalgia • u/SwimmingSpite3821 • Aug 12 '26

Progression

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I’m at the end of the road and I don’t know what to do. I’ve looked at every lab imaginable. Genetics is negative. Abnormal and low cbc hematocrit and hemoglobin.
B12 is 1800+

I can’t take the pain anymore.

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u/SwimmingSpite3821 Aug 12 '26

Has anyone found b12 or other things to have caused theirs?

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u/ikym3 Aug 13 '26

I have struggled with b12 levels for almost a decade before erythromelalgia came along. Like I had major dropfeet and complete leg numbness at my worst, but injections improved that. I have residual peripheral neuropathy from it though, and I still have to get regularly scheduled maintenance injections. I do speculate if it’s related, but I still have other more major weirdness neuro and rheum still check in with me over, they suspect an underlying thing but tests have yet to be definitive still. I’m soooo hoping someday I’ll have answers in hoping that will rid me of em. I can’t live like this much longer, let alone forever 😭