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Anyone out there with Erythromelalgia?

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

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@lacy2

I think I have it. Try to keep short: since last June, burning hot cheeks whether or not face flushed; sometimes goes down right side neck tops of shoulders. Similar to Rosacea but waited 5 months to see dermatologist who does not know, did say maybe a bit of Rosacea.... said could try Elidel ? cream but I have been putting small cold packs on face as medication-sensitive. Over the weeks/months it has become much more painful, more often, and for longer times. Today on and off and crying and pressure in head, sometimes burning ears with it etc. But am waiting 7 months to see Neurologist I have seen before as we have none where I live. Lagely I wake up through night with it. Tonight I realized I could use my rectangular home made pad filled with rice I put in microwave, or used to, and put in bag in freezer and have it wrapped around neck as it goes under chin. Honestly, with other things I contend with and 80 in six months I can hardly stand it any more. I will check about the Lidocaine mix ointment, thanks. When it started my face could be pale, as it usually was, or flushed and across nose etc., and I realize its hard to diagnose but I don't have a Dr. but a Nurse Practitioner. 2016 got P.N. of hands and ower arms and feet and lower legs after Quinolone drug for uti, but was manageable without meds... now this on my face and started to burn from knees down. Yes have fan in bedroom almost directed to me but freezing outside so although face etc. boiling, body cold esp. right hand and right foot. Still no diagnosis but seems to fit this as doesnt seem to be food allergy etc. J.

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Replies to "I think I have it. Try to keep short: since last June, burning hot cheeks whether..."

I have a machine that I put ice and water in and it pumps the cold water into a pad that I put on my face. It helps a lot