Finding support for Erythromelalgia? Connect with people like you.

Were you told that you don’t have erythromylagia if you don’t have small fiber neuropathy? 3 posts – 3 participants Read full topic

Hi, thanks for letting me join. I chose to participate when I discovered a treatment thats actually helping with type 1 EM. It was after learning that this disease ran in my family and that there was an actual explanation for the things that were happening to me and upon my listening to a doctor breakdown the pathogenesis of both forms that I started a successful campaign on specific nutrients that might be a benefit. For me the symptoms have been more neurological with the swelling of the feet and the burning sensation on the skin certainly being present but more as a side of effect of the neurological problem associated with it all. I started my course of treatments with a natural sodium blocker alpha lipoic acid I then also tried supplementing with potassium pills and even attempting to constrict my blood vessels with butcher’s broom. These various treatments occasionally assisted but after the doctor tried Ativan I went to a natural form of that which is passion flower and found that to be suitable as a replacement as well though none of these treatments actually gave any real relief. But it was after laying there and realizing that the trimmers that I was feeling in my nervous system were actually very similar to what could be present in someone who has Tourette’s or epilepsy that I considered an anticonvulsant and was absolutely floored when I discovered the news that was reported about cilantro. It seems that there is a decanol within that plant that is being researched for epilepsy because of It’s ability to prevent convulsion specifically by creating a persistent open state to the potassium channels Within neurochemistry. Having remembered and already knowing about the issue of persistent sodium channels and how potassium is what balances that I couldn’t wait for the 4th of July weekend to be over with so that I could go to the health food store and purchase a tincture of cilantro and give it a try. For me it actually works and while I do find myself still occasionally having to take Ibuprofen and also replenishing my electrolytes since I am burning through them about 10 times faster than the normal individual I am so relieved to have something that gives me a life of normalcy again. Because type 2 seems to be able to benefit from something as simple sometimes is taking aspirin and type 1 has seldom seen in positive response from something so mundane I felt it worthy of mention not just because somebody out there might be able to benefit from the treatment but because of the ramifications of what this might mean for the entire subject to the academic community 2 posts – 2 participants Read full topic

I’m 23 and and I live alone in Central Indiana. Recently, I’ve been feeling weak and having stabbing pains alongside my disease, and I had chills briefly the other night, but I think I’m better from that now, having Erythromelalgia really sucks in the sense that I feel so reliant on a fan or water constantly when flareups occur and then even when I’m slightly sick, I feel so hot and cold and uncomfortable and it feels like hell and I just in general I feel so weak compared to others. I often do a lot of moaning and groaning if I’m even just slightly sick. I also hate that when I try to work out it gets so much worse and so it’s hard to get myself in shape because it triggers flareups. It’s also hard to eat healthy and to be active in general and then with this condition it makes it so much worse, but despite that, I do eat some healthy things sometimes, and I try to walk around the neighborhood sometimes every night, but not always every week in order to get a few thousand steps in at night, especially since I don’t have a job and I’m taking school online. I have some really good friends online that I talk to regularly, but in person, I have basically no one now besides family on holidays, as my parents passed away and I have no siblings. So I’m looking for community and support and resources and treatments and relatable experiences with this rare disease. 3 posts – 3 participants Read full topic

I’ve had EM for three years. It started in my toes. I thought it was due yo my fibromyalgia. I just lived with the pain , thinking There was nothing I could do. In April it moved into my ankles causing the pain to explode! I was finally able to see a doctor last week who prescribed Tegratol. I thought I had hope, but now it’s in my knees, and with weather heating up I can’t sleep more than thirty minutes before needing to soak my feet. The pain at night is so much worse at night that I can barely stand with the aid of crutches. I’m frightened, alone, and I don’t want to live like this. I don’t think there is hope. Does anyone get better? 8 posts – 6 participants Read full topic

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 4 posts – 4 participants Read full topic