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Anyone out there with Erythromelalgia?

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

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@drolker

I have an autoimmune condition called Sjogrens. The Erythromelagia started about 10 years ago, but was transient, mostly affected by fluctuations in temperature inside the house or outside or be exercising. The neuropathy began before that and I was prescribed Gabapentin . That seemed to be helping , at least in the beginning. In the last year the Erythromelagia has gotten worse, adding edema of both feet and ankles , so severe, I couldn’t wear any of my shoes . Recently the NP added Lasix to my list of Rx meds. I cut the Gabapentin back in the last three weeks to
See if this also helps reduce the edema. We are still working on this. The other Rx I’ve tried is Rhofade cream . It’s for rosacea. It also seemed to help a lot last spring and summer, but not so much now. I do not want to take steroids or narcotics. I am open to any safe or effective treatments .

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Replies to "I have an autoimmune condition called Sjogrens. The Erythromelagia started about 10 years ago, but was..."

@drolker, I was diagnosed with lymphedema about 3 years or so ago and wear 20-30 mmHg compression socks to control the swelling in my ankles and calves. Has your doctor mentioned wearing compression socks or have you tried them to help with the edema in your feet and ankles?