Hi everyone. It’s really hard to explain to others about our condition since its so unheard of. Erythromelalgia is often linked to Reynaud’s. Is erythromelalgia also an autoimmune disorder?
No, my doctor says it is a genetic disorder that can be activated by nerve damage. He said it is an autosomal dominant disorder and I’d have a 50% chance of passing the mutated gene underlying the EM to a child. Some patients (typically younger than 40) may recover from the nerve injury that triggered their EM and see symptoms improve. I seem to fall in that category.
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It can be autoimmune and can be hereditary. There are blood tests that can determine this. Mine is neither of those factors so it is a guessing game to know what caused the onset.
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I think EM can only be secondary to an auto-immune condition. As in, an existing auto-immune condition triggers it. Sometimes EM presents in advance of an auto-immune condition not yet apparent. However, EM itself is not immune mediated.
Hello Elle,
I have EM in my feet and I have POTS which also causes blood to pool in my feet when sitting. POTS is among autonomic disorders.
I also have Rosacea which reportedly may be linked to autoimmune conditions.
I discussed with my cardiologist how EM and POTS may be interacting.
“Dysautonomia means dysregulation of the autonomic nervous system. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.”
I found the Dysautonomia Information Network helpful and some forum discussions include experiences of EM and also Autoimmune conditions people experience: https://www.dinet.org
Best wishes.
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Thanks. Your response is very helpful
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Carter, I agree with you. In the order below, I got Reynaud’s, EM, then Rheumatoid arthritis. The treatment for the RA is effective but unfortunately does not help my EM or Reynaud’s.