Hi, I've been experiencing mild symptoms for about a year and was just diagnosed with EM this week. Mostly, I have flares in my hands - red fingers with some swelling and burning/itching. My toes get red or blue sometimes. But I have none of the pain that I've been reading about. I believe I have primary EM as I am otherwise healthy. From this site, I learned that some people don't have pain, but I've found little info on how the disease progresses. Has anyone started with mild symptoms like mine and then gotten worse? Even though I'm pain-free now, should I expect my symptoms to get more severe and painful? Thanks.
Gina...I am in the exact same situation as you and haven't been able to get an answer to the same question. I too have red hands which are almost constantly hot (and sweating) but not painful. My feet become bright red when walking...I didn't wear socks all winter and live in Michigan. I go to bed holding a towel-wrapped ice pack. But I don't have pain. My hands are extrememly dry, cracked and peeling and I believe that's from the heat/sweating. My dermatologist has diagnosed me with EM. I too would love to know if there are others out there that have these same symptoms without pain. Will the pain come?? Do we just have a mild case? Or maybe we don't have EM after all. Hopefully someone can shed some light on the progression process. Thanks for posting. I'll be watching carefully for an answer.
I am also the same way and asked a question like this a few months back. My em is mostly with my feet and they got hot, itchy, puffy, and uncomfortable but I wouldn’t call it pain. I THINK for some people they progress but there doesn’t seem to be much literature about it. It is scary though, and I hope my symptoms just stay as is.
Great question, I can tell you a bit about my situation but not sure of definite answer. I started off with pins and needles in my left toe. Although it was uncomfortable i wouldn’t have said pain (although it is categorised as nerve pain) after about a week the pins and needles spread to whole foot then both feet, about the same time the swelling and heat started. Within a couple of months the burning pain was in both feet and nerve pain in both legs. I did have 18 months pain free after about a year of symptoms but still had the feeling of millions of insects crawling under my skin. The pain came back after the 18 months (at same time as car accident and subsequent fibro diagnosis) I am finding things a bit easier to cope with now, not sure if its partly due to accepting my new life and embracing what I can do rather than dwelling on what I can’t do. I spent most of 2012 in bed, in pain and depressed. I am now medication free and more positive. (Helped by ACT & mindfulness). Yes I have pain, yes it brings me to tears at times but I have to make the most of what I’ve got.! So glad you are pain free, and really hope that it stays that way.!
my burning has gotten worse over the years. it gets worse every year though. it started out just in my toes but now it’s basically all over. my skin doesn’t burn everywhere, but it gets red and swollen everywhere. it only burns on my face, ears, hands, and feet. definitely the worst in my hands in feet, significantly toes and fingers. I burn countless times a day, it seems to be triggered by almost anything.
it seems like it’s spreading up my limbs as time goes by
I have similar symptoms, flares but I wouldn’t call it painful. I did have pins and needles in my toes but Lyrica has eliminated this type of nerve pain and a sodium channel blocker called Melixetine has reduced the flares. There is no way to predict if your condition will change…some worsen and other stay mild according to my neurologist. At every visit he reminds me not to dwell on this and just live each day to the fullest. Since my diagnosis I definitely look at life differently and try to challenge myself to do as much as I can within my limits.
I think not dwelling on what may come is a good idea. At the moment I can handle the redness and heat without medication. What drives me nuts is the dryness and cracking of my hands. I know it must be caused from the heat making my hands sweat which causes them to dry so badly. No creams seem to alleviate that problem. Do any of you have this issue?
Thanks to everyone for their willingness to share their experiences. A month ago I didn't even know this condition existed and now I find myself thinking about it too often and searching the internet for info that doesn't seem to be there. I'm saddened by how severely it affects some people and how much pain there is. Compared to most of you, my symptoms are so mild and I am in awe of your courage and comforted by your camaraderie and support for each other. My sense is that the condition effects everyone differently and I do think that its not best to dwell on what may happen. Definitely a wake up call to seize the day and stop worrying about the small stuff.
ditto to Gina!