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Anyone out there with Erythromelalgia?

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

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@nancyc777

The burning tingling pain started in my feet mildly in 2017. I was misdiagnosed with neuropathy. But as my symptoms increased, and my life became very limited, I started searching and asking for many tests. I went to a Neurologist and was tested for neuropathy and the test came out negative for neuropathy. From there I searched for blood vessel disorders, And the major blood vessels were normal. I tested for many things, heavy metals and arsenic, blood vessels, neuropathy, and others. I finally found a neurologist who diagnosed me with ERYTHROMELALGIA. I have tried gabapentin, Lyrica, oxcarbazepine, carbamazepine, amitriptyline, Duloxetine, And many supplements. All of these either did not work, Or else the side effects were intolerable. I find that store brand Bengay, ice packs, and elevation are about the only things that have done any thing for temporary relief. Next, I am going to try berberine, it is an over-the-counter supplement that has been researched quite a bit and found to help with neurological inflammation. I find that the “Now” Brand of supplements work the best for any supplement, I know this because I had my vitamins tested With a blood test, and that is the brand that works the best. I take ALA but I have not had any relief for the Neuro pain by taking ALA by Mouth, But I take it anyway. I also tried steroid injections near my spine, with no relief. I have found that Triamcinolone 0.1% cream Twice a day just on the very bottoms of my feet helps some. This is a steroid cream but must be used with caution, but because it’s on the bottoms of my feet where the skin is tougher I do not have to worry about thinning of the skin there. I cannot go food shopping because of the pain, I cannot stand long enough to cook because of the pain, My life has become very limited. I spend a great deal of time on the couch elevating my feet, And I limit the ice packs to 10 minutes at a time to avoid skin ulcers by icing too much. By afternoon my feet are dark red with purple areas because of the vascular part of Erythromelalgia, And the nerve pain is so bad, I just wish it was visible so the doctors could see it. I have learned that it is the micro and small blood vessels that are affected, so that is why the test for veins and arteries comes back normal because they only test for the large veins and arteries. And it is my understanding that the Neuro part is the small fiber nerves, So things like a spinal nerve stimulator device do not work. Has anyone else discovered anything that has worked for them? I live in Florida, so the hot days are so much worse for me, because anything heat related makes my feet worse. It is better for me that it is cold out and my floors are cold.

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Replies to "The burning tingling pain started in my feet mildly in 2017. I was misdiagnosed with neuropathy...."

@nancyc777 Welcome to MayoClinic Connect! I’m glad you’re here. You’ve certainly tried everything and documented it well. Are your doctors at a comprehensive medical center or university hospital? The reason I ask, is because I don’t feel that you are getting adequate care. Maybe you are, but it seems like nothing is working for you.
Would your doctors be open to referring you to Mayo Clinic, Jacksonville? Would you be open to going to Jacksonville? Here is the link: https://mayoclinic.in/1mtmR63