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 
Jane S
Rockford IL
