New member questions

General
1

Hi I’m new here and my name is Jane. I always wake up in the middle of the night with different types of pain including pins and needles. Sometimes burning hot or freezing as if I was walking through snow barefoot. I have been suffering with severe pain several times a month. Then it went to never stopping. I’ve been given different lotions like lidocaine and lidocaine patches as well. Also tried a pill that is commonly used Gabapentin but I couldn’t tolerate it and it didn’t work for me. So they tried Lyrica and it seemed to help at least a little bit which was better than nothing. They started me at a low dose and I didn’t feel much relief so they increased the dose and my husband said I started dropping things and fidgeting and so the doctor said we’d have to cut back again because we didn’t want those symptoms and I’ve been on that dose for as long as I’ve known what I had which is maybe a year. I’ve know I’ve had it a lot longer time but I thought it was something else I was positive and of course I can’t think of the word. There are many doctors for that type of thing.

I called that doctor and told him my symptoms and he said it sounded right. So he made an appointment for me. When I went in and showed him my feet and described all the different feelings. He decided he would put me through a course of tests and when I was done with all the testing it came back that I didn’t have that type of thing. He

I’m had me come back in and gave me 5 pages on Erythromelalgia. Even though I still can’t pronounce the word, I quickly started reading every word on every page, some of which I could not pronounce either, but everything in that report matched every symptom I had. The sad part was that it was so rare. There were no doctors to speak of and very few people that had it. I felt so alone and the pain got worse and worse and worse. I was so depressed. Seems like I’ve had so many things that are rare, but then my psychologist sent me Three Links to check out. This being the first and the second was to find other people that had it and hopefully I could get some answers from reading what they wrote. So I’m just starting this today. I hope I do everything right. I hope some of this helps you or someone, and I’ll continue to read everyone’s information on here. Hoping I can find an answer to find a doctor that really knows about this. Thank you for listening :slightly_smiling_face:

Jane S

Rockford IL

Are there any doctors out there knowledgeable about EM?!?
2

I use Valium sparingly for relief, it helps. You most likely also have small fiber Neuropathy, and also maybe fibromyalgia. I have all three everywhere in my body. The valium is the best thing I have found, but you must use it sparingly. Also the lidocaine patches I cut them up in small pieces and put them everywhere. Have you ever had thorough testing for Lyme and coinfections? EM and Neuropathy often comes from that.

3

Unfortunately Jane we have all seen many doctors without any relief.. I have had EM for 15 years. The first couple were horrific. No sleep constant pain. Only temporary respite with ice water which is very bad for your feet… Found out the hard way, sores etc… Then I found onAmazon the Cryo/Cuff. Takes the burn away immediately…

images-2
images-2205×245 7.29 KB

4

Jane

I’m new here as well. Just diagnosed in late March 2026. In my hands. Probably brewing forever but the last 3 yrs over explosive stress brought it to the surface. Last straw of stress Feb 7,26 end of Feb I start to feel something trying to emerge. My Dr ran regular test and ANA with top 5 auto immune markers. My ANA quadrupled in 14 mths. I see Rhuemotologist this Friday the 12th June. My Dr has never in his career seen this, nor treated it

He knew it’s a thing. Is hoping it secondary to whatever autoimmune I have. But like everyone he trialed and Errored me on Aspirin, BP meds pain meds, compound cream with Ketamine amitriptyline and a BP med in the cream. Lidocaine cream

After rheumatologist, I’m scheduled to have Ganglion nerve block with pain management

About finding a doctor. Go on website Burningfeet.org they have a physician directory that members have seen and recommended. One might be in your area

Mostly Neurologist

But as a nurse that has never heard of this nor have I ever seen,treated a patient in this amount of pain. As a research nurse I’ve done over 100 hrs of research

So my DR say " we’ll figure this out together"

I had lots of questions, being confused, overwhelmed, painful, depressed. Or sharing research info. I would email the nurse a lot

I received a letter of discharge 2 days ago

Saying my condition is extremely complex

After 7 yrs and blessed to find a DR like him. This was only my 3rd actual medical problem visit in 7 yrs. Every patient gets 1 he with him every visit, sometime just to BS, laugh, talk about life

Truly 1 of a kind. I’m shocked

. And no clue who to find as a new PCP.

Try the burning feet website under support button

Good luck

Went for blood work follow up only every 3 months bc of diabetes.

I