Peripheral Neuropathy vs. Erythromelalgia

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.

Who prescribed the low dose naltrexone for you? Will most pain clinic doctors prescribed it?

I prescribe it for some of my patients who have this issue. Dermatology or pain management or PCP should be able to do this. It has to be compounded at a local pharmacy. Usually start at 2mg/day for 3 weeks and can titrate up to 4 if needed. Can't use if on any opiods.

Frequent use of Visine can cause vasoconstriction and is not recommended. The best product I have found for dry eye is preservative-free Refesh Optive drops. They were recommended by my outstanding ophthalmologist.

Thank you very much for this information. I am sensitive to medications that can alter mood and would like to start at 0.5 mg/day. I'm interested in LDN because of the evidence it can break the destructive cycle of autoimmune reaction.

I have SFN and EM. I was diagnosed with EM first. My systems included hot, red feet that could be triggered by hot weather but I would also have flare up with no real cause. Mostly in the morning or evening. Besides being extremely red and hot, it also felt like I was walking on hot sand! And my ankles would swell. Now I have all that, and small fiber neuropathy which just makes my feet hurt worse.

Hello Deb, I just found this discussion group and am curious whether you have found anything that is helping you with the SFN and EM. I have had EM since 2020, and each year the burning episodes get worse and last longer. I am using lidocaine anytime I need to wear shoes and also each night before bed, as well as taking Tylenol or Ibuprofen. How are you doing with it?

Hello @debinsf8, Welcome to Connect. While you wait for @debschults to respond here is some information from a post earlier in this discussion that you might find helpful.

More resources on Erythromelalgia:
National Organization for Rare Disorders (NORD) – Erythromelalgia: https://rarediseases.org/rare-diseases/erythromelalgia/
The Erythromelalgia Association – FAQs: https://erythromelalgia.org/resources/faqs/

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/

@jlander, @gardeningjunkie, @dipperlip1, @lilymol and others may also have some suggestions or information to share with you that might help with the burning episodes.

I lived with burning feet for years so understand your misery. You might consider you have multiple issues causing burning feet. Often with autoimmune issues it's not simply one issue but multiple issues causes symptoms. I had burning feet starting in middle age: my foot pads the most afflicted and the redness, burning and pain much worse in the evening; trying to sleep was difficult. Could you also have allergies to contact materials? Were any contact allergies ruled out with the 5 Day Extended Patch Test? This is not the simple 30 minute test for environmental allergens, Google information about it. This 5 Day Test test revealed reactions to over a dozen daily contacts. To stop the burning feet I needed to create a barrier or walk on allergen free surfaces. I can walk barefoot on dirt or sand. But even barefoot inside on surfaces safe for me the soles of other peoples shoes contain an element from rubber which contaminates the floors. Or the floor is cleaned with cleaners I'm allergic to. The only shoes safe for me are 100% plastic, vinyl or leather contacts. Otherwise, in a tennis shoe for example because of elastic allergies I wear a 100% cotton sock; Buster Brown and Cottonique online, both sell elastic free, 100% cotton socks. I then put on a plastic bag and cover that with sock containing elastic to support this layering. I can then wear tennis shoes or shoes of other blended materials. Yes my feet get hot, but in my case that doesn't trigger my burning fee. In your case that would be an issue. A cotton sock alone will not provide a barrier from surfaces you are allergic to. There are a few 100% vinyl flip flops and shower shoes , but EVA, Ethylene Vinyl Acetate, is replacing the 100% vinyl and I have found one brand that seems safe so far, yet haven't used long enough to be sure because I but have bought other EVA sandals and my foot pads begin to burn again. The expensive 100% leather shoes are supposedly safe for me, as I didn't test positive to formaldehyde for example which is often used to tan the leather, yet some brands make my feet feel hot, not to the burning point, but I only wear these shoes for a few hours at a time when I need a specific style for social situations.
I hope you can find some relief.