My brain is a jumbled mess, so I’m hoping I can get through this without being too confusing.
My name is Starr. I haven’t yet been diagnosed with EM, but after researching as much as I could find on the internet about it, I am pretty sure that is what I am dealing with. The difficulty, for me, is that I have a 29 year history of Type 1 diabetes. When I finally went to the doctor about my symptoms that I have had since I was a little kid, he just wanted to write it off as diabetic neuropathy. But I KNEW this was something different. I. GET. HOT. Primarily in my hands, feet, face and ears, but there are times when I have it on my neck, chest and arms as well. My skin gets red. Same locations. I can feel heat coming off of my skin. When my feet get hot, I can make them feel better for a bit by putting them in cold water, standing on the kitchen floor (No carpet), or various other things similar to that. I can also hang them over the edge of the bed or recliner and get at least SOME relief. I itch. A LOT. I thought it was just dry skin due to being diabetic that just wasn’t really relieved by lotion. I have found that this can be a symptom of EM as well. The veins in my hands and feet bulge when it gets worse. I have tiny veins that do not like needles. When I am having a flare up, there would be no trouble getting a needle in one of those bad boys! When I am not having a flare up, you almost can’t even see the veins under the skin. I only occasionally have swelling. And since I deal with chronic pain, I wouldn’t be able to know what might be related to EM and what may not be.
My redness doesn’t appear to be as extreme as some of the pictures I have seen. But it is still there. I’ve been trying to get photos of it, but my cell phone kind of sucks where that’s concerned because it keeps evening out my skin tone all on its own.
Another thing that also seems to be a possible symptom, whether I am having a flare up or not, the parts that are not effected can feel really cold. For example, my upper arms typically don’t have flare ups. They seem to do the opposite. They get pretty cold. Although, to me, they are comfortable and I enjoy it. But other people that have noticed always try to warm them up (personal boundaries are often overlooked by the elderly and when you’re a nurse).
I have tried a few things to help and usually the best, for me, is avoiding heat (summer time really sucks!) and wearing sandals (only helps a little). I can cool my feet off in water, but this increases the risk for sores on my feet and being a diabetic, this is not good. Wearing sandals helps a bit, but as I am also a nurse, I can’t do that regularly. Elevating feet helps at times. but sometimes not having them elevated helps. The primary thing there, for me, seems to just not be touching anything. Not because of pain, but because the heat builds up on whatever I am touching and makes them worse. I can’t do cold showers, it makes them worse after I get out. I have to take warm showers and let the ambient temperature cool them off (I’m the same way with sunburns). I tried Lidocaine cream, no help at all. I’ve tried Gabapentin, also no help. I take magnesium, but because of some of my other issues, I can’t take the recommended dose, so I’m out of luck there. When I am driving by myself in my car, I turn the AC on full blast on my feet. I have to roll down the window and wear a jacket so the rest of me doesn’t freeze, but I will gladly suffer the cold to keep the flare ups at bay! And exercise with socks and shoes is pretty much out of the question! I have not yet tried anything prescription other than Gabapentin and am a little concerned about trying stuff for various reasons.
I’m pretty sure that I have the familial EM. My mother and sister both have a much milder version of this. Their flare ups are pretty rare, but they do happen. None of my brothers seems to have this issue though (I have 4 of them). I have had this for a long time. I remember, as a kid, I hated wearing socks and shoes. I drove my mom nuts because I would go outside in shorts and barefoot in the middle of winter and I would be fine. I wouldn’t stay out too long, but I could handle it for a few minutes. And this started before I was even diagnosed with Diabetes.
So for now, I will continue to do as much research as I can and the next time I see my doctor, I will give him my theory and see how it goes. In the mean time, any recommendations you might have that could help relieve the symptoms would be greatly appreciated! And I’m sorry this is long, I tried to make it as short as possible.
Welcome to the EM forum, Starr! We’re glad that you found us, even if it’s a shame that you needed to come looking for us.
Have you tried using the search feature here to look for symptom relief strategies? Try a few keywords in the space with the magnifying glass (right hand side of page) and see what pops up.
All the best to you
Seenie from Moderator Support