Peripheral Neuropathy vs. Erythromelalgia

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.

This is a different "Deb," but I am now very curious about the 5 day patch test. I find I cannot wear shoes (tennis shoes or even sandals) with foam footbeds, and almost all of them do have foam. I have tried cotton and also wool socks, but neither have helped with the burning that begins within minutes. Was this patch test recommended by the doctor treating your EM, or did you seek it out yourself? I have not seen a dermatologist for EM, only my primary doctor and a podiatrist. Could I ask what brand of 100% vinyl shoes you found? Thanks in advance!

Sure seems like you have an allergy if you react within minutes. I can tell in a few minutes if a fabric chair has Scotch Guard, Fire Retardant, or his made with blended materials containing Mercaptobenzothiazole. I bring a large clear plastic bag to movie theaters and even doctor's offices that have fabric seat. Google True Test Patch Test Kit, that's the kit my allergist ordered. It's expensive, around $1,500 however Medicare pays for this test as well as other insurance programs. Dermatologist's also use these test kits, however the allergist or dermatologist must be licensed with the test kit company and not all are. Ask them if they are licensed before you make an appointment.
You mentioned irritation from foam footbeds. Because of this test I learned I am allergic to memory foam because it is synthesized using an element from rubber, Mercaptobenzothiazole. It is a known human carcinogen and yet our FDA allows its use, stating that it is used at safe levels. For me any level causes inflammation. It is not used in polyurethane foam, but most shoe inserts these days use memory foam. Or you tennis shoes could have elements of rubber, latex is an example of a rubber element. This element is also used accelerate the blending of many other materials.
I wish I could give you recommendations for vinyl shoes. The company from which I bought dozens of these shoes, Native Shoes in Canada, no longer makes these vinyl shoes, they now only sell EVA. Randomly searching the internet I have found shower shoes made from vinyl. Ugly for sure. Plastic is also safe for me.
If you have one contact allergy, chances are you have several. I've have close to a dozen. These allergies cause various eczema symptoms', it's called Allergic Contact Dermatitis, ACD. It's chronic, no cure, just avoidance. Your reactions will become more severe with continual contact of an allergen. Your histamine armies become more reactive.
Try layering with the socks and plastic bags as I mentioned next time you wear tennis shoes and see if that helps. Mercaptobenzothiazole off gases, you must provide an occlusive barrier, simply wearing socks of any type won't block the chemical off gassing. My new mattress had memory foam, I believe this is what triggered my allergic reaction. I didn't develop this until middle age, about 50.

A clog that is 100% vinyl I can wear I buy on Amazon, made by Backdoorshoes. It has a removable insert and I don't know what the insert materials are. The reason I hesitated to recommend it is because it has a wide front and with the insert removed it's made even wider. Plus these clogs squeak! Still, I have several pairs because I slip off my safe clean house sandals of vinyl or leather and put these on to go outside if walking on gravel or rocks. You might consider wooden clogs if they have an all wood footbed, some clogs have rubber on the bottom of the shoe but you won't have contact with the rubber, a common allergen. The trouble with all clogs is that they are elevated and that can be a hazardous if balance is an issue.