Peripheral Neuropathy vs. Erythromelalgia

Hi lili,
Yes on the natural doctor. Get with a doctor who will check your bloodwork, your gut, your diet, and find a direction and symptoms to start treating, which usually is effecting the rest of the body!😃

Hi wiedd
I get different locations from my doctor as circulation improves. Also the machine I use treats to the cellular level, promoting tissue healing. I’ll send an example. Keep walking, pumping those toes with combined elevation!
Tx Bren

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.

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.

Um sorry have so many issues I feel I am hopping from one room to another; now eye issues pain puffy etc etc but I think on here was mentioning getting hot flushes mostly face one side, or shoulder or top chest etc etc to the point it hurts and burns... and now after waiting 2 yrs for nurse practitioner she has gone on medical leave indefinitely, I feel for her, but hope they get a replacement - she was going to send me to dermatologist ...but now am wondering about something: been on Imodium for many years and a month or so ago renewed prescription but from a different company! So, the ingredient is the same but on Internet the additional ingredients eg colour, fillers, etc. are different from previous pills. I would imagine this can happen with any drug. The main medication is the same, but the other ingredients are different, because I just took a couple of pills today and within an hour right side of face on fire type feeling... how do we know if a medical condition, result of medication or even, which is tricky... a different manufacturer of the same medication - honestly its detective work isn't it. Also I bought new dry eye drops which on package says two ingredients but I wrote them and their Internet site shows FIFTEEN "INACTIVE INGREDIENTS" So you buy a med, in this case Visine for dry eyes, the box lists 2 ingredients and the web site 15.. not picking on this particular item but how many other meds are we taking for the "main ingredient" but its the inactive ingredients added for colour, texture etc., could be giving us problems, such as hot flushes, honestly am worn out trying to find out. and doctors certainly don't have time to compare one brand to another of the same drug? I have spent hours on it today...Or am i wasting my time? Oh dear!

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.