Scared, New, and Sleep Deprived

Hi everyone,

I’ve recently been experiencing symptoms that sound like they could be EM. I’ve gone to a couple doctors (who didn’t know anything, but kept poking holes in me) and wasn’t given any sort of insight. So I’m glad there’s a place to ask questions.

Just this week I started getting symptoms. (i.e. my foot starts itchy as a warning, my feet get red (especially the bottom) they start to swell, are hot/hot to the touch and it can last for awhile. It’s very painful. It happens mainly at night and I keep waking up from my sleep (hence the sleep deprivation).

The thing is, I’ve lived my entire life in Arizona. My body has always been used to weather that was 90 degrees and up, and even enjoyed it. If anything, I considered 70’s to be cold! I just moved to South Dakota and am experiencing what it means to have weather in the negative degrees.

Could this be just my body acclimating to the new weather? Is there a chance it’s temporary? I don’t experience a flare in warm showers, though my feet get exceptionally red.

Also, if this sounds like EM to you, what sort of questions should I be asking my doctors? What sort of tests should I request or ask to get checked? I have no background knowledge and no one in my life really empathizes or understands. Please help!

Hi Dalkola,
I am not really going to answer any of your questions about EM as I shouldn’t really be awake yet I am in the UK! That is something to remember we are all in different time zones.
I just wanted to say thanks for joining us and don’t worry about not getting much help from your doctors if you read through existing discussions you will find loads of us the same. It’s nice to see you join in so quickly.
I would suggest for a start you read through existing discussions as you may well find your question has been discussed.
We are a friendly lot of people and you can’t do much wrong so long as you don’t insult anybody or tell people to ignore what their doctor says that sort of thing.

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@dalkola welcome and I hope you get a lot of answers from reading existing posts

Hi welcome
there is some good info on the website and a data base list of doctors that know what it is . I wish you luck

I hope you find the answers to your questions and I hope you find relief from your symptoms and can get some good sleep!

Hi Dakola,

The best way to see if it is EM is to expose your feet to warm temperatures and to get the doctors to observe this, in order to diagnose possible EM. Hopefully if you are observed and appear to be experiencing a flare, they will then do further tests to see if it is primary or secondary EM. Also have a look on The Erythromelalgia Association website( and look at their patient leaflet on EM. This is a great leaflet and the first one to be created for EM patients. Hope you find the answer.

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