Does this sound like EM?

General
1

I've been suspecting that I have EM for a few years now, but keep doubting it because my symptoms seem so mild compared to most that I read. The past year or so though I've been seeing a bit of worsening in my symptoms and am beginning to worry that my hunch may be correct. I'd just like opinions as to whether this seems like EM, or if this was how it progressed for anyone else, as the few doctors I've seen have all told me they just don't know what it is:

-Since my teens, my feet have always felt incredibly hot in the summer, and when wearing shoes, I'd get what I used to think were "heat sores" - tiny red patches that burned badly.

-Those initial symptoms have followed me through the years, and always seemed aggravated by heat or longer periods standing.

-Oddly enough, most other times my feet and hands tend to run very cold and clammy. I also have a very small temp range that I'm comfortable in, and usually find myself very cold or overheated.

-For the past 10 years or so (I'm 32 now), when I have what I think of as "flare ups", the bottom/sides and heels of my feet will turn very bright red, and they have a burning/tingling/itching, and I usually get a few slightly darker areas with a deep intense bruising feeling. Flare ups now seem aggravated by heat, standing, or sometimes simply when I go to bed, and can last for hours to days. They don't appear to swell, they only turn bright red - never purple, and I would classify them as painful but still tolerable (I can still work, go out, etc - they will just hurt/burn the entire time). I can still go about my life, and would classify them as ranging from an annoyance (with the strange deep itching almost daily), to a fairly intense pain if I make the mistake of staying on my feet when they flare instead of giving them a good rest.

***most concerning to me*** is that today I looked down and the palm of one hand was almost comically bright pink/red, similar to my feet are when they flare, however, it did not burn or feel hot. It looked like I had placed it on a red shirt with dye that had bled. This has *never* to my knowledge happened before. I could not think of any explanation for it, one hand just suddenly looked bright red on the palm like it had an allergic reaction, and after a few hours it simply went away.

My heart sank a little when I saw it, since I know many of you mention that your EM affects both your hands and feet and that the disease progresses over time. I'm hoping people here can chime in and let me know if this sounds like EM to them, even though my symptoms are much more mild than most. If so, are there any home remedies commonly recommended for this milder stage of EM? I see many talk about steroids and more serious drugs, and I personally would like to avoid those unless this progresses to not being tolerable. I would, however, like to try as many known remedies as I can in case there are some easier solutions. So far, I've only had good luck with bare feet/flip flops, trying to stay cooler even though I feel chilled when I do, elevation and wearing wet socks.

Any advice/input is appreciated. If this sounds like another issue instead, please let me know.

2

Hello Violet.

I am not a doctor and as I am sure you know I can't offer up a diagnosis but it does sound a lot like EM

Not everyone has severe pain or pain at all for that matter. Some patients do progress to worsening symptoms but many do not. Like yourself I have a VERY small window of temperature where I don't have problems and sometimes still get flares in my typically cool enough temps. I have to stay uncomfortably cool to keep flares away. If I am just sitting a good temp is about 63 degrees. If I want to move around and do a little light housework I need it colder.

The fact it gets worse at night is extremely common with EM patients. Mine is like clockwork. I can sit in my recliner at 63 degrees and be fine then every night between 6 and 8 pm I start flaring regardless of the fact I was fine just a moment ago and nothing has changed! When that happens I can't make it much cooler so I use fans for spot treatment. I just point the fan wherever I am flaring. I get it on most of my body but rarely all at the same time. Sometimes its just my feet or just my hands.Sometimes it's just my face and other times just my knees. For me my knees are often the worst. I can get a combination of two things at once and rarely three but they seem to take turns burning.

I don't know of any at home remedies and have yet to find anything prescription either that has helped me. I know others have found relief with different prescription meds. Different meds help different people. The only thing that has helped my to any significant degree is just staying cool and resting /elevation. It doesn't leave any room to have a normal life. I can't work or even go do anything social. I just stay home in my AC.

I haven't given up though. There are still some treatments I have yet to try but we are working on it. I usually try a treatment for at least 3 months before we make a decision as to weather it is helping or not because my symptoms get better and worse on their own. We need to know it is the meds helping and not just part of the cycle. At that rate it takes a long time to try the varying treatment options.

There could be another cause for you but it does sound like EM. I would do as dkel9307 suggested and take info on EM and pictures to your doctor and they can help you find out for sure.

Try not to worry too much about it progressing. Yes some people do get worse but many stay the same and some even get better. I am glad yours isn't so severe you can't continue your normal life! I pray it stays that way for you.

Take care,

ALina

3

Thanks for the replies and input. I've been watching this forum eagerly for a few years now, always hoping that I'd see news of some major advancement in treatment. In all honestly, this forum makes me both thankful that my symptoms, if this is indeed EM, are still relatively mild - but it also scares me to see how much it can possibly advance. Up until now I've simply been thankful that mine was confined to only my feet, and of more annoyance/slight pain, but seeing my hand turn red the other day was very discouraging. I am truly very sorry to read about so many others with symptoms so much worse than my own.

I wonder if anyone on the forum has made a correlation between diet/symptoms? I have been vegetarian since high school and vegan for about 7 years now, and wonder if perhaps that might have something to do with my symptoms being milder. I'm also curious if people have noted a worsening of symptoms with sugar/processed foods? I myself think that alcohol and dehydration are additional triggers for me, but have been starting to cut back on most of the processed foods I eat as well, to try as many preventatives as possible.

The worsening during sleep/sitting/laying down has always baffled me. It always seemed to me like getting off your feet would be helpful, but I notice the itching/burning always gets worse when I lay down. For the longest time I wondered if the condition was related to circulation because of that oddity. I do think elevating my feet higher than my head works, but it's not very comfortable or always practical.

Thanks for the advice on locating a dr. I have begun searching in my area, though I have no insurance. I tried about 4 doctors over 5 years ago and all said they didn't know what it was. I will continue searching though, as I'd like to be prepared if things get worse. For now, my feet constantly have that deep burning itch (probably because I work at home standing most of the day), but even at their worst during flare ups this is still manageable without pain meds. If things progress past the point where resting/cooling my feet down no longer brings the pain to a tolerable level, I'll definitely look into medications for relief. I figure when the time comes it's probably going to cost a pretty penny to see a good doctor and trial/error a solution, so it's definitely a route I'm saving for if things get worse.