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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: Mar 12 2:12am | Replies (307)

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@emfm4me

In response to the OP, I was diagnosed with Erythromelalgia (EM) one year ago at Mayo Clinic - Jacksonville. It was a relief because my Rheumatologist in Chicago had misdiagnosed me. Since then, I relocated to Jacksonville area and continue to follow up with my Rheumatologist at Mayo. I’ve also been diagnosed with Fibromyalgia (FM) and Ocular Migraines subsequently. The past year has been full of emotions and chronic pain. EM and FM have been tough, especially trying to figure out personal triggers, and losing the ability to have the very active/athletic life I once had. My kids are still young, so I miss running around with them. Sometimes the flares are so bad I’m unable to walk properly. Currently I take aspirin, gabapentin, and CBD oil. They all help slightly, but I’m still searching for a better medicine. To anyone newly diagnosed: You are not alone. I wish for you a clearer path to health.

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Replies to "In response to the OP, I was diagnosed with Erythromelalgia (EM) one year ago at Mayo..."

I have SFN and burning feet and legs. I have erythmyealgia. If you look at Matk Davvis's page ay Mayo, they have connected it with faulty gene. They have also connected it with blood diisorders. It's all very scary and most doctors don't understand it.