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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)

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@susanop

I would love to see a thread dedicated to this. I have not been diagnosed because I have not been able to get into the doctor while a flare was still active but my symptoms match everything I've read. I have psoriasis as well.

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Replies to "I would love to see a thread dedicated to this. I have not been diagnosed because..."

Take pictures of your flares, and document all your symptoms. I have kept a photo-log since the beginning. It has been invaluable when discussing, or proving, what you are referring to.
Alternatively, I have made it a point to drive myself 50 miles to the closest walk-in clinic while the flares are happening. As soon as the attending physician enters the room, pull off your socks and show them. There seems to be a hesitancy these days towards “hands on” . But if they won’t look....then you have to show.

I suffered for years because every doctor I went to about my symptoms couldn't "see" the flareups. Taking photos helps. I can't wear socks or close-toed shoes, even in winter unless it's freezing and there's snow on the ground! Sometimes I'd like to just walk in the snow!