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Anyone out there with Erythromelalgia?

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

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@jlander

I was just directed to this site as I am new to Mayo Connect. I was diagnosed with erythromelalgia in 2018. It started in 2017, it then became dormant the fall of 2018, but surfaced again this past November 2020 and I have had flare since then. I have not resorted to medications other than aspirin, a topical cream and ice pack but may be looking into other medications after I give it another few months to see if it gets under control again. This still all new to me! I am 74. I have read a lot of comments on erythromelalgia and understand my pain and flare is not as bad as many people face but it is still there. Have any of you had your EM go dormant for awhile? I had that happen before but it has returned after 2.5 years and I met with my doctor to discuss. He is a new doctor to me and had not seen my flare up before. He said he could put me on some medications but so far I've been trying to handle like I did before and had it go dormant. I don't know if I'll be so lucky to have that happen again. The only other meds I'm on are Losartan (100mg) and Simvistatin (20mg).

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Replies to "I was just directed to this site as I am new to Mayo Connect. I was..."

@jlander, Glad you found this discussion and posted so that you can meet other members like @runwthme, @txbren, @jcmoffatt, @hotfooted, @emfm4me and other members who may be able to offer some suggestions. You might also find the following resources helpful:

- National Organization for Rare Disorders - Erythromelalgia: https://rarediseases.org/rare-diseases/erythromelalgia/
- Erythromelalgia Clinic in Minnesota - Overview: https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220