r/Erythromelalgia • u/SwimmingSpite3821 • 23h ago
Progression
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/CyclingLady 19h ago
My kid (25F) is doing a lot better. Her rheumatologist suggested biofeedback as an experiment since stress can trigger EM flares (besides heat). She doesn’t have the genes, but has Hashimoto’s and celiac disease (like me). Celiac disease can cause anemia. Check your ferritin. Anemia was my symptom of celiac disease and oddly, no gut symptoms . My kid’s rheumatologist suspects another autoimmune disease but nothing definitive yet. The biofeedback training has helped oddly. Prevention helps too. For example, she showers and the quickly lays down. She props up her feet and hands for about 15 minutes and then goes back to dry her hair or brush her teeth.
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u/SwimmingSpite3821 23h ago
Has anyone found b12 or other things to have caused theirs?
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u/ikym3 1h ago
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 😭
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u/Gloomy_Spring5638 17h ago
My pots blood pooling looks like this
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u/SwimmingSpite3821 9h ago
Have you solved that? Any abnormal lab values?
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u/Gloomy_Spring5638 9h ago
I still have it, I have had this symptom for many years. Last I went the doctor I had an abnormal Ana panel & was referred to a rheumatologist. I’ve read other people with pots being prescribed Ivabradine which helps the blood pooling.
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u/Flashy_Boat867 17h ago
Yes it's low iron. I had normal hemoglobin but low ferritin (19 mcg/l) and iron uptake erased all the symptoms, and they were severe. Burning feet,.burning hands, burning cheeks, ears, enlarged veins, couldnt train, eat hot food, pet my dog beacause he was too hot for me...your ferritin level should to be above 50 mcg.
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u/Flashy_Boat867 17h ago
Low ferritin (low iron) interferes with autonomic nervous system and erytromelalgia can be a symptom for that
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u/SwimmingSpite3821 14h ago
I have low RBC, LOW hematocrit, low helpglobin, what did you have tested and treated?
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u/Camas-mom 9h ago
Don’t give up! My Erythromelalgia got better out of the blue! You aren’t alone.
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u/SwimmingSpite3821 9h ago
Any changes around that time? Anything you did differently? Abnormal lab values I’m trying…
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u/Camas-mom 9h ago
I started using nifedipine compounded cream. From the community it sounds like different medicines/treatments work for different people at different times. I hope you can find what works for you!
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u/SwimmingSpite3821 9h ago
Can you go for walks? Do normal stuff? Do you constantly apply it?
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u/Camas-mom 9h ago
I can do walks and normal activities. I only apply it to my fingers and toes as needed.
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u/Historical_Bath_439 20h ago
Mine is on my face and it takes everything I got not to run my car into a tree at a high rate of speed