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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)

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@debinsf8

Hi wildflower1948,
I can relate to your confusion, as I went through a phase where I just could not believe that there were no better diagnostic tests than trial and error with different treatments. I've had symptoms for 4 years now. Based on many articles I've read and according to my doctor, if you respond to aspirin, then it is likely primary EM. My doctor had me take 325 mg of aspirin daily for 2 weeks, and it had no effect. So the assumption then is that it is secondary to some other disease or syndrome, which is why it is important to get your blood tested at least annually (I would prefer more frequently).

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Replies to "Hi wildflower1948, I can relate to your confusion, as I went through a phase where I..."

Hello debinsf8,
Thanks so much for your helpful response!
I definitely will have bloodwork done at least yearly. EM's rarity is probably to blame for lack of better diagnostic testing.
I have read that small fiber neuropathy as a cause can be overlooked. It seems the more I research, the less I know.
I am glad I found this forum. Best wishes!