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Peripheral Neuropathy vs. Erythromelalgia

Autoimmune Diseases | Last Active: Sep 7 11:43am | Replies (56)

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@debschults

I just joined Connect, and I'm finding many of your comments relate to what I'm experiencing. I was diagnosed with EM in 2012. Actually, I had symptoms for several years before that, and none of the doctors I went to could offer any explanation except that it must be a circulation problem! I did my own research and found out about EM, which a doctor confirmed when I gave them the research I had. I have since been diagnosed with peripheral neuropathy by a neurologist. My symptoms keep getting worse, compounded by the EM. This summer weather is especially challenging, with redness, burning and swelling feet on top of the nerve pain! I've tried many different medications and other treatments over the years. Currently I take pregabalin, and also supplements of Alpha Lipoic acid and B vitamins. Pretty much anything that is supposed to help with nerve health. I recently had a battery of tests by both a dermatalogist and a rheumatologist, and they where inconclusive. I now have to sleep with a fan blowing on my feet, and during the day sometimes the only relief I get is by soaking my feet in cold water. Not the best for skin health, but it's all I can do to feel at least moderately comfortable. I am open to any suggestions that have worked for others.

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Replies to "I just joined Connect, and I'm finding many of your comments relate to what I'm experiencing...."

Welcome @debschults, I have PN but only numbness and no burning or pain. @drolker mentioned that a cream made at a Compounding Pharmacy has helped them in this post - https://connect.mayoclinic.org/comment/711838/. @pkagarwal mentioned purchasing socks with gel packs that could be placed in the freezer helped in this post - https://connect.mayoclinic.org/comment/669997/

You may also be interested in these discussions to read what other members have shared:
– Erythromelalgia: https://connect.mayoclinic.org/discussion/erythromelalgia/
– Burning Feet syndrome https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

Consider trying low dose naltrexone 2mg along with pentoxifylline 400mg tid. That later can thin your blood but your dermatologist will know all that.