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Anyone out there with Erythromelalgia?

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

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@kellyc14

Hi everyone. I was diagnosed by my dermatologist back in 2016. I went to the vascular and erythromelalgia clinics at Minnesota Mayo in 2018. They ran 4 days of various tests on me and diagnosed w me Reynauds as well. I take gabapentin. I’ve tried Cymbalta, Lyrica, and others, with no luck. Gabapentin (high dose) gives me some relief to function. Like one of the others, my feet are purple, and then turn hot and red. This has moved to my hands, ears, and face as well. Mind blowing frustrating. Life is not the same as it used to be. I read everything I can get my hands on see if there is some breakthrough.
Should also note that my dr (and Mayo) prescribed topical cream w ketamine/lidocaine/amitriptiline(sp?). I use that on my feet in am/pm when flares are bad and rhofade on hands and face/ears, which somewhat keeps those flares in check.
All the best to you all.
Kelly

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Replies to "Hi everyone. I was diagnosed by my dermatologist back in 2016. I went to the vascular..."

I have the same issues plus neuropathy. I found that 600 mg. stabilized Alpha Lipoic Acid gives me some relief. I also use Aspercream with Lidocaine on my feet most nights, plus 1000 mg of Aspirin and 100 mg Gabapentin, which I will try to eliminate since the higher does did not help.
I went to Mayo's in 2006 and had some relief for several years until the neuropathy kicked in which was worsened by the Covid vaccination