What doctor do you see for help? I saw a Rheumatologist but when he started wanting to send me to a Cancer doctor I backed off. I am on Gabapentin and it only helps with the redness some of the time. He also said to see a pain doctor who could put nerve blocks in place. I think he does not know what is wrong and I don't like being experimented on at my age. Please advise me on what to do. Thank you I really am desperate. Myself

Hi Myself, I was just recently diagnosed with EM, that's to say a dermatologist took one look at my hands and told me I have EM. I had already found this disorder on google and knew it matched my symptoms to a T so there was no doubt in my mind that she knew what she was talking about. She suggested that I find a Neurologist to help me, because EM is a neurological disorder. Good luck and best wishes


Hi Myself .... I totally understand your desperation ... I too have recently been diagnosed with EM .... I have been trying to get my head around it since ! .... I have avidly read everything I can get my hands on to understand what the hell is going wrong with my body .... I am still none the wiser to be honest ....Everyone who has it seem to be at different stages in the progress of this horrible disease with this info I am trying to work out where I am on the ladder ! ..... I have swelling in my hands and feet when I have a flare It's painful to walk less than 10 yards without having to stop because of severe burning and cramps in the back of my legs ..... But I can wear canvas shoes and cotton socks ... I NEVER wear any kind of synthetic material against my skin,cotton, linen,wool (if I must) and silk ..... I always cut out any kind of label I cannot bear them !..... All my bedding is 100% Egyptian cotton and it's really cool against hot skin ! ...... Sometimes if my feet are really unbearably hot I soak a small cotton sheet in tepid water and wrap it loosely around my feet and put the fan on .... It really helps ! ..... Well my lovely I'm off to prep dinner keep your chin up ! .... Take care Lesley xx