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DiscussionAnyone out there with Erythromelalgia?
Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)Comment receiving replies
Replies to "I would love to see a thread dedicated to this. I have not been diagnosed because..."
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!
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.