Thanks to Stacy's experiences, I researched EM, photographed my feet, and called my rheumatologist. To my immense good fortune, she has experience with this disease. I saw her on Tuesday; she looked at the photos, my feet, and my hands, and said, "This really looks like erythromelalgia" (she may have said "erythromyalgia," but the terms seem to be used interchangeably often).

Stacy, I feel SO sorry for you. Are you on "Living with EM"? (I know you posted on an EM board but am not sure it was the same one I'm on.) The research they cite, and the experience of many users, confirm that PN and EM often go together (along with Raynaud's, which I also have). I actually think they started at the same time for me.

My rheumatologist ordered a bunch of bloodwork, which I had today. It includes several things you didn't have. She says neurontin and Pamelor (both of which I take) are recommended for EM symptoms. Also aspirin, which -- so far -- is helping me.

I wish you could see my doctor. (Not sure where you live, but I'm sure it's not near Bethlehem, PA.) Hang in there. I agree with the advice to ask your doc why she is NOT considering this disease. There's a BMJ article that you may have found already--8 September 1990--that's concise and hard-hitting about how under-diagosed EM is.

Are you using Salonpas Deep Relieving Gel? It does help cool the burning in my feet. As Mrs. D. says, it's stronger than Biofreeze. I wrote about it on the EM blog, and people were excited to learn about it. (I gave full credit to the "fabulous super-moderator on our PN board.") And Stacy, I wouldn't have known about EM if it weren't for your ordeal. So -- thanks. I probably won't see my rheumie again till August, but I'll pass on anything else I learn that might be relevant.

Hugs,
Lynn