How unusual am I?

Is there anyone else here whose EM did not begin in the hands, feet, or head?

Is there anyone whose EM continues to be excluded from the hands, feet, and head?

Where did your EM start?

Nah mine did in the hands—but I thought you were all healed up after the new med?

While it doesn’t approach the level it did before, it’s still always there in some capacity. The medication is not a cure. It allows for stimulus control. There are still things that can exacerbate it. Avoiding those stimuli keep it in check. Without the medication (and prior to my experimental phlebotomies) it raged nearly 24/7. Nothing stopped it and ice only provided temporarily relief for an hour or two.

I am new to this site and saw your old post. My EM started 4 months ago when I noticed my chest was a little red and my face was extremely sensitive to sun/or any light source after only a few minutes. It seems to cool when I get into a cool dark room but later in the evening my chest and face (which doesn’t turn red?) starts to burn. I have been on Galapatin for a three weeks and it seems to help. I have been prescribed propranolol and will start taking it tomorrow. My doc thinks it might lessen my sensitivity to sun/light.

The symptoms only effect my upper chest and face. Arms, legs, feet and hands…no issue. No joint pain at all. I seem to be something of an anomoly but would be interested if someone has had a similar situation…thanks…Rick

Mine also affects my chest sometimes, although it started in my hands.

I missed this one long ago.
Mine started on my knees. First on the right knee, I felt it warm, eventually red, and swollen. Then the other knee, later both feet and ending on both hands. But definitely knees are the worst.