Right now my symptoms seem fairly mild and intermittent although very disruptive to my sleep --that's when I get the worst flares. I have Raynaud's also and tend to be cold a lot (anemic and low body weight)so that seems to keep the flares at bay but when i get under the blankets and finally get warmed up that is when the burning begins. But looking at the pictures of the ulcers and skin damage is kind of scary. Right now I only get redness and heat and burning. It has not changed for 6 months. How quickly did things progress for those of you that have this so very severely. I am so sorry for what you must go through. Of course my case may be totally different as it is secondary to MCTD(mixed connective tissue disease). Anyone else out there have this and Raynaud's or have this secondary to an autoimmune disease?
I'm waiting to see a specialist to see if I have Raynauds too, (although I suspect I know the answer to this already as my twin sister has it as well as lupus and RA plus my finger nails keep losing colour) it used to only be heat that casued flares but now the cold is causing lots of pain too.
I have had EM for about 5 ish years but I'm lucky to not have blisters etc like in the pictures. The blistering is casued by lots of soaking in cold water so as long as you steer clear of that you should be ok. Although that doesn't make the pain any less and I know from experience how very tempting it is to want to soak your feet in cold water, I find a fan much better.
Mine went from me feeling like I was just on my feet and working too much, (about 3-4 days a week, I'd have to put them up, or put them in a cool bath) to now it is 24/7. I don't flare, like with peaks and valleys of redness, I am bright red always now. It was about 2 years of progression, and it was severe, It was an "Oh my God I'm gonna die" severe, to where I am now. I only have it in my feet and legs. My ears do get hot, and hands too, and they are not red. I was tested for several autoimmune diseases, and tested negative on all of them. It's been about 7 years now. ~~~ I really am a fan of holistic wellness, it's the only thing I've found to help me~~~
In the holistic wellness, what helped you? I am about at the stage you are. Ears, hands and the main one is the feet. Jim
Heidi said:
Mine went from me feeling like I was just on my feet and working too much, (about 3-4 days a week, I'd have to put them up, or put them in a cool bath) to now it is 24/7. I don't flare, like with peaks and valleys of redness, I am bright red always now. It was about 2 years of progression, and it was severe, It was an "Oh my God I'm gonna die" severe, to where I am now. I only have it in my feet and legs. My ears do get hot, and hands too, and they are not red. I was tested for several autoimmune diseases, and tested negative on all of them. It's been about 7 years now. ~~~ I really am a fan of holistic wellness, it's the only thing I've found to help me~~~
I'm glad you asked this question as I am also fairly new to the condition and curious as to how it has progressed in others. I have Raynaud's as well, although the EM started a little over a year ago and the Raynaud's has come on strong within the last 3 months.
The EM started out with just red toes in late 2010... then red hands around mid-2011... then the warmth and heat... then my face & scalp (beginning 2012). I have started experiencing great sensitivity in my fingers and my scalp in the last month. I have put my hands under warm (not even steaming) water and felt like I burned them. Running my fingers through my hair feels like I am scraping across a sunburn. Getting a haircut has become an anxiety-filled event.
I'm not sure if the escalation in pain is related to the Raynaud's suddenly appearing or if it would have happened that way anyway.
Currently all tests for underlying conditions came back negative so both conditions have been ruled as Primary.
Um...stick your feet out from under the covers. lol I seriously do this. I am now to the point where a flair has me on my back medicating. In 1990 I was in the military and ran to keep in shape. At the end of my 7 mile run my feet would get real hot and there was some numbness in the ball area. In hindsight it was my first symptom. So from hot feet after a run, to a wheelchair last year. 22 years.