I'm 99% positive I have Erythomelagia

Hi everyone,

I never knew such a disease exist until a few days ago. I still can’t pronounce it properly. No one deserve this and I pray that there will at least be a treatment that works, and someday, a cure. I have been all over this forum for the last couple days reading as much as I can. I can relate to many members here and you are all in my thoughts.

To summarize my situation. I have always have cold hands and feet, nothing that would raise alarm, just the type of person that still have freezing feet after being in warm bed for 15-20 mins. But when I get hot, usually after walking in the sun, my feet tend to get red and a bit puffy so I tried not to wear sandals cause I thought they look ugly. And lastly, my legs tend to fall asleep more often than normal people. When I sit in a weird position or on a hard wooden chair for too long, I will have trouble getting up and walk funny for like a minute before I resume back to normal. My hands also sweat more than usual, for example I will have trouble doing monkey bar or pull up cause they are super slippery.
All this must have been signs of problems coming.

This year I turned 30 and everything was okay until this April 2017, 8 months ago. My toes started to swell, turned red and got very itchy, especially at night. I was traveling and was in Asia then, I thought it must be some kind of allergy, I took allergy pills and applied anti itch lotion. I woke up in the middle of the night because of the crazy itch, and I’m usually a deep sleeper. I found that hanging my one itchy feet off the bed and soaking it in cold water helped immediately and I slept like that.
This lasted 3-4 days and then it went away, I never thought about it again.

Then I moved to the US, last month I was in the Midwestern states visiting and it was snowing there. My toes started to swell up, fell hot and itch again. I was sure it was because I wear socks right away after shower before my feet are completely dry. It lasted a couple days and then went away the minute I got back to the West coast so I didn’t think much of it.

And then, 5 days ago, the same thing happened again and it hasn’t gone away like my last two times :frowning: They are more red, more swollen, sometimes, purple-ish. Especially the top of my toes, they are so swollen it makes my skin look a bit shiny. They feel tight, sensitive and only hurt when I touch or knock on the tip of my toes. Like I’m tying a rubber band around my toes and let it puff up.

I started doing research hoping it’s some kind of fungus but it’s not. They were so itchy, sometimes it’s a constant brain wrecking itch, sometimes it’s quiet and then a sudden throbbing itch. I tried all kind of itch cream and they did not calm me down, just cold water can do the trick.

Two days ago I tried to wear my dry athletic socks with loose sport shoes and went to the gym. surprisingly they did okay in socks, they just itched 1 out of 10 once in a while, mostly they felt hot, hotter than I have ever seen. My feet also felt very sweaty like i’m wearing “steam shoes”.

I thought it was going away, but yesterday afternoon they itch again. I got so upset and depressed because now I can’t do anything I like anymore. Sports, hot bath, drink coffee, eat spicy food, walking… I’m not just saying this because I found out about my symptoms, I really enjoy doing these things. So I decided not to let it stop me, I took Aspirin 240mg, I went to play tennis, when I run and my feet slides inside the shoes, they actually help the itch. I know it might be bad for the skin but I wanted to experiment.

After I got home, they were okay so I think partly the Aspirin kicked in, partly because my whole body temperature was high so my toes did not feel abnormal? So every time I feel like I’m cooling down, I started doing push up, or plank, anything to keep my temp high. and I think it helped.

But later I got tired and it was getting late, so they start itching again, so my hope kinda withered. Today, they itch less, it was more of tingling, sometimes pin and needle, but still very red, swollen, uncomfortable, hot to the touch toes. I think the Aspirin is working for me, I have not had to use cold water today. The rest of my feet is still cold.

I wonder if this time it’s here to stay or it will go away like last times… Does it sound like I have EM? I wonder if it’s going to turn to pain like other members had. I am not ready to change my lifestyle but I guess I have no choice. I’m sorry for this crazy long post but I would be so grateful to hear from people who suffer from the same thing as me. You are all warriors. Please excuse my ignorance with medical terms and stupid guesses, English is not my first language. Stay cool and I wish you all find something that work for your flares.

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well I like you am still searching for answers I was running into dead ends with each dr apt that I went to. Finally the vascular doctor said I had raynauds I feel colder than most even if its not that cold out. my hands and feet and tip of my nose will become freezing, however on the other side I heat up worse than anyone else if I’m in the sun walking my toes will also become bright red and swollen and my hands will get so hot and fat that I cant make a fist and they burn like I’m holding them over a flame. I started to google and that’s were I read about EM I feel as though I to have this but have not found a dr to confirm this but like you my hands and feet sweat a lot in the summer so maybe this could be part of the EM. sounds like you have EM to me but like you I’m also learning from reading things on this group. its a great way to talk with others going threw the same things as you. my flares come on and off all day and night. it’s affecting my knees upper arms face and ears seems like over the past almost 2 years now it’s just gotten worse. my body is constantly fighting itself from being to cold or to hot ugh so I can relate for sure. I’m here if you wanna chat anytime it helps to talk with others and know your not alone.

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