I have been having these symptoms awhile and I just came across this page. I was hoping that those of you that know about this might be able to tell me if it looks like erythromelalgia.
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Hi applejacks! I am new to this group, but have had symptoms of EM for a few years. This does look similar to how my feet look.
Have you found that your legs/hands flare up during some of the common triggers (heat, alcohol, spicy foods, etc)?
Welcome, applejacks, if you look at the photos other members have put on the site (use the "media" tab at the top of the page), you will see many photos similar to yours. You can use the "doctors" tab to post a discussion if you need a doctor recommendation. Reading past discussions should be very helpful to you, as well.
Just been looking at your photos applejacks. They certainly look like photos I have seen of other people’s flares. My hands flare up to the wrist, bright red and swollen, my feet too up to my ankles. A bad flare will result in great heat to the tops of my legs but with a fine itchy rash, not red all the way up like yours. Trouble is there are so many causes for EM and it manifests in different ways. If blood rushes to your extremities with burning and perhaps swelling then it may well be EM but that doesn’t tell you what has caused it.
Have you tries aspirin? It helps a lot of people.
The only trigger that I have been able to identify is heat. When I take a shower my feet will always look like the picture that I took. Other than that I have not been able to identify any causes, just random occurrences. I have noticed that when it gets late at night I often have flare ups, but I haven't been able to figure out why I randomly get extremely hot just when I am sitting in class or doing nothing out of the ordinary. The other thing is that I don't have the intense pain like the majority of you do. Just the pins and needles feeling and if I continue to take a warm shower too long then it becomes painful but as soon as I get out of the shower and just get somewhere cooler the pain completely goes away.
I was wondering though do any of you get hot flashes besides in your extremities? I get hot flashes all over, almost as if I am going through menopause then but I am definitely not. I am only 21 years old. I'm just wondering if this might relate or if any of you have had this experience?
My heart goes out to you youngsters trying to cope with this. The heating up from late afternoon and into the night is very common and there are lots of us who don’t have the fierce nerve pains that others have. When you say ‘hot flashes’ do you perspire along with them? Have you been tested for some of the diseases that can cause EM?
It does look like EM, but trust me, you'll be able to feel it more than see it. At least that's how my case is. It's very very painful and uncomfortable.
I also do get hot flashes really often. And I noticed that when my feet are below me like when im sitting in a chair, rather than having my legs level with my hips, this will trigger a flare. And my feet do burn wayyyyyy worse when im trying to sleep at night. It's like it knows i'm trying to sleep.
Hi Tizzy.
I am not a doctor and cant tell for sure but It looks like it very well could be EM.
Just because it doesn't hurt or doesn't hurt all of the time doesn't mean it's not. I have more mild flares that you can feel a warmth and something happening but I would not classify as pain. I also get terrible screaming and crying pain as well when the flares are worse.
You hit the nail on the head when you posted that it might start to hurt after the shower but as soon as you get cooled down the pain instantly goes away. That is a strong indication of EM. I was once at a doctrs appointment and was still in the waiting room when I was hit so hard with burning pain over most of my body I had to just run out of there and get outside where it was cold. I screamed..... I have to go!...I will call to reschedule!......It's too hot in here! As soon as I got out side in the cold winter air it took probably one minute or less for the pain to go away. I even had a stranger that helped me get out of the building because I dropped my purse and I couldn't bend over to pick it up due to the intense pain and pressure reaching down caused. It felt as if my hands would explode if they didn't stay above my heart. The stranger that helped said....Wow! you look normal now. Just a minute ago you were red as a lobster!. She was amazed to see such a change in less than a minute of my being outside.
Needless to say that doctor decided I was crazy and couldn't continue to see me or be of any help they called it. This was before my diagnosis of EM. Long story long....It responds rapidly to cooling and is made worse by warming. If it looks like a duck and quacks like a duck........but I'm no doctor!!
Take care Tizzy,
Alina
applejacks said:
The only trigger that I have been able to identify is heat. When I take a shower my feet will always look like the picture that I took. Other than that I have not been able to identify any causes, just random occurrences. I have noticed that when it gets late at night I often have flare ups, but I haven't been able to figure out why I randomly get extremely hot just when I am sitting in class or doing nothing out of the ordinary. The other thing is that I don't have the intense pain like the majority of you do. Just the pins and needles feeling and if I continue to take a warm shower too long then it becomes painful but as soon as I get out of the shower and just get somewhere cooler the pain completely goes away.
I was wondering though do any of you get hot flashes besides in your extremities? I get hot flashes all over, almost as if I am going through menopause then but I am definitely not. I am only 21 years old. I'm just wondering if this might relate or if any of you have had this experience?
I recently saw a few different specialists about all this and it turns out I do have erythromelalgia. The sucky thing is that it is no longer just caused by heat. Heat is the main thing but using my hands to play the piano or type on my computer also triggers it. I also noticed that if it is late at night it flares more and the other bad thing is that it has started to become painful. I was wondering how long you guys were able to go without the painful symptoms beginning?