Disease Progression?

Have you, in your personal experience, found this disease to have progressed? If it started in hands or feet, did it spread to other body parts over time? If so, how long did it take to do so?

Hi Twinmommy. I was diagnosed almost a year ago and my disease has progressed from my feet and lower legs to my upper body. I now have EM in my hands, arms, shoulders, cheeks, nose and ears. My right side is usually worse than my left side. Last fall I also developed Raynauds phenomenon in my fingers. Remember, about one third of EM patients become worse, about one third remain the same, about one third improve, and in 10% the disease goes away.

This disease upends lives, but try to remember that bad days are generally followed by better ones.
Beth L.

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Yes. The burning started in my palms. It has spread in a straight Line up to my elbows, from there burning into my armpits. Electrical shocks have started running down the sciatic nerves in my legs to the outer edge of the soles of my feet. Disconcerted.

I have the redness in my toes when i exercise or wear socks for too long.

I also seem to have some burning sensations on my arms, hands and thighs.

I have no redness in these other areas.

I also have livedo on my thighs which sometimes feel s like a peppermint patty was smeared on my thihgs or slightly burns.

After months of it just effecting my toes, balls of my feet, and tops of my feet, it has slowly started to spread as of last night. No redness or burning yet, but those little pains like being mildly electrocuted… further up my feet, in my r heel in the back, and in my r ankle. Not all over…just in little spots. But I know they were never there before. I wonder how long it’s going to be before I have to cover my whole feet in Lidocaine patches at night. And if and when it progresses past that…then what?

In the words of the Crown, I try to remember the motto “Keep Calm and Carry On.” It isn’t easy. I also try to keep in mind the words of Winston Churchill, “We will NEVER give up, we will NEVER give in.” Because sometimes I do feel sorry for myself, I get on these boards and see there are those EMers who have it so much worse. They’re so much braver than I, that I feel a little ashamed, but greatly inspired. I hope you have a really COOL day!

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I think that every day is different with emotions. Some days I got this ! Some days I don’t. The tears fall. There are always going to others worse off. There are always going to be others better off. But that doesn’t lessen your symptoms or your emotions of what you are going through. Because it has changed your life. I don’t see it as feeling sorry for yourself at all. Everyone effected with this disease has major emotions and changes in their life. Who ever thought that one day you couldn’t go outside? Who ever thought that just going from your bedroom to the bathroom made things severe? I knew about disease never this one. This is a big change. A lot of learning and a lot of adaptions. A lot of explaining and family and friends to understand. It’s a horrible experience. But I do get exactly what you mean. So don’t feel ashamed. What you are going through is extreme even though others are worse. Pamper yourself when you feel like this. Find something to make you laugh. Change of thought. Listen to inspirational music. Try different things that when you think you are feeling sorry for yourself, you can try to change your thought. I’ts just what I do and try to do. Hang in there and yes we are not giving up. Together we have to find an answer.

Dear Rayofhope, I just found and read your message of the 15th. Your kindness was especially timely. Perhaps I was MEANT to not find it Til now. I had an especially bad night last night. Thank you sooooooo much! P