Diagnosing EM help!

Hi, my name is Olivia im 24 and I have had 2 recent episodes one which left me wound up in the ER. I’m starting to think I’m allergic to exercise! The first episode was 2 weeks ago when I was home fixing dinner after Running on the treadmill. All of a sudden my feet started burning and itching terrible… I had to rip off my socks and shoes! Took a brush to scratch it because I just couldn’t take the itching. They were red and flared up I noticed. Then the palms of my hands were itching terrible and turning red. My face turned blotchy red too. I thought I was having an allergic reaction so I took a Benadryl and went to bed… Was fine the next day. Fast forward 2 weeks, last night I was running again, hopped off the treadmill and my hands started itching again…sure enough the redness itching and fine rash came back just like before slightly spread up my arms too. Then my feet started up slightly but not as bad. I went to the ER and he thinks its a “vascular condition” similar to raynauds…of course when my body cooled down this time it went away… without any medicine. Did some research and wound up here :slight_smile: what do you think? Does anyone ever not get pain? It just seems to itch burn and turn red on me… However it is very uncomfortable! What type of doctor is best to diagnose this? What can I expect if I have this… Will I ever be able to run a half marathon like I dream of? What type of thing is best to do to treat an active flare up? Thanks so much!

Olivia, I'm not sure about the itching.... for me, EM has never been itchy, only painful. Although I HAVE had milder EM episodes where I did not have really severe pain, just a more uncomfortable and HOT feeling! I can have EM in my face, ears, hands, chest, and feet. Mostly happens in my feet, however.

I cannot wear shoes much at all, I have sandals that I wear most of the year, I only wear shoes in the dead of winter (I live in Idaho) if I have to go to a doctors appointment, 'cause that's the only time I go anywhere LOL! I keep my feet uncovered in bed all year round, cannot put any covers over them or I might wake up with burning pain and swollen, bleeding feet. When I'm flaring I HAVE to have a fan blowing on me, at least on the parts being affected. I keep my feet elevated, although there is controversy in the EM community about elevating feet. Some people use cold water or ice, but I've heard that ice can be dangerous. Definitely avoid alcohol! Alcohol triggers EM in my feet every time!

Good luck in your journey to a diagnosis, hon!


I hate to say it but its likely the exercise that is causing the EM flare. I can attest to that from personal experience since I used to be a marathon runner. Then my EM hit. My runs went from 4 days a week steadily down to 0. I then started to doing workout DVDs with low impact aerobics (since it seemed that the higher my heart rate went and the more I sweat), the more angry my EM got.
Fast forward 10 years, and I am now only able to do some mat Pilates workouts with a DVD at home, AND have to hold ice packs in my hands while on the floor. It’s pretty silly to watch, but strangely, it makes me feel good to at least be able to do something a few times a week.
I am unable to go for walks either at this point. Can’t be in the sun without getting big painful flares that last for days. Also can’t even grocery shop for food anymore since it demands too many steps.
Is there a different type of workout you can try for a little bit to see if it’s the intense cardio that’s making your body react? I’m hoping you have a back up plan for workouts. The thought of not being able to workout at all can be a huge burden, I know! : ))

does the EM usually continue to get worse even if exercise is lightened? Exercise is essential for me :frowning: I used to be a size 28 now 130 lbs later I’m a size 10…

I think it's your workouts. I find I can use a treadmill if I don't over do it and get too hot. Turn up the AC if you want to work out. If the room is cool, I can do more. And I take my sohoes off right after so my feet cool down. EM doesn't get worse for everyone. There are many people who have mild cases, who don't need this support. If you can identify your triggers and manage them, this condition can be manageable.

The Dr. finally me was a Dermatologist. But I had already diagnosed myself with online information. [Thank you Google!]

I started with a Neurologist who had no idea what it was. I think more medical practioners are hearing about EM. Right now it sounds like you get it when you get hot. It could stay like that. I find 20 mg Elavil keeps the flares down. And I can't wear socks EVER but I can wear mesh running shoes.

I'm afraid you might have to change your dream and your exercise regimen but you can still find something to do. I swim, walk, yoga and do weight training.

It's hard to accept this in the begining but try not to get discouraged. Many people can live with it.

Hi Oliva, EM has so many different ways to show its ugly face that what you have experienced may well be Erythromelalgia. To get it diagnosed may be difficult as not too many doctors know about it. A dermatologist may be your best bet, because a lot of people think they have a rash when it first starts. After that it's trial and error to find out how best to live with it or what you can or cannot do. Quite a few people go and see a Neurologist for help

.Medicationsense.com is a good website - look for articles from Dr. Cohen.

Good luck

Hi Olivia. When my EM first developed (a few years ago), it was VERY itchy. I was in an almost constant flare for the first few weeks, then the itching went away and my toes settled into the episodic heat- and activity-induced flaring. I usually do not have pain either - just what I would also describe as burning, stinging discomfort (unless I have a particularly bad flare, then it can become painful, but it doesn't seem to be anything near as bad as many here suffer).

I have not gotten a hard diagnosis, just "well, I've never seen this before, I guess that EM thing you mentioned might be it" kind of answers from doctors, plus one neurologist who had actually heard of EM and said it was the closest thing he could think of, but he didn't know enough to diagnose.

I just do very small sessions of mild exercise at a time, in a cool room. If you have access to a swimming pool, I suggest you give that a try - water regulates skin temp much better than air, and swimming is the only way I can REALLY exercise. Unfortunately, the pool I have access to just got its heat turned off, and now it's too cold for me to get into at all. Anyway, give it a try if you can!

Without a diagnosis, I just try to anticipate what might cause a flare and begin trying to cool my toes as soon as I can. It's the deciding factor in where I go and what I participate in. My EM is actually worst in winter, when the air is cold and I am constantly trying to find a comfortable temp for my toes, inevitably causing a flare with any little warming. At least in summer I can step indoors, kick off my sandals, etc. I don't know what kind of climate you live in, but since our conditions seem similar, I will be interested to know if yours is better in autumn like mine. When I get into a stretch of days with high around 60 and low around 45, my flares disappear for a while, even with boots on. Let me know how things are going for you!

When it comes to exercising it can be very difficult to do instense impact exercises like running. I am 24 and when I was in high school I used to be a runner myself. As my EM progressed I became less and less able to tolerate exercise. Mine would sometimes only manifest itself as itching too and redness but mostly it was painful. As a result a put on a lot of weight. I am not in the process of losing it which is hard because of my inability to do hard exercise but there is hope. For me i love to do walks with intensity but have my feet submerged in water- ( i live in colorado so we are near creeks and such) or going to the pool and staying in the shallow end and exercising that way. It is important that you identify what could be triggering the episodes other than just exercise- heat alchol certain foods. I myself cannot eat gluten dairy or eggs or drink alchol and have to limit my caffiene. I also had problems with digestion and absorbing vitamins so i take suppliments for that. But I feel like a different person. I rarely have swelling or pain at all. Whats important is that you dont loose hope and keep trying to look for different solutions. Take each day as it comes and be proud and happy when you can even be a little more active than you were the day before.

Good luck

Hi Olivia,
My status is pretty much the same as Pesto’s. There is one way that I can sometimes get some exercise, though. There is a dirt/sand path through the woods, along a river where I live. I can usually walk barefoot on this path as the ground it quite cool. There are drawbacks to walking barefoot, such as cracked skin, stepping on sharp objects, etc. Some times I walk stocking footed. The socks don’t last long but that’s OK. If it is 50 degrees or colder, I can walk in leather moccasins (which I ripped the padding out of). It is quite a challenge, but you CAN stay fit with EM.

Thank you for all your responses and encouraging words… I’m starting at the family Dr. Next week then ill go from there. I will keep you posted on what she says. Oddly enough I am a Registered Vascular Technologist and have performed Allen Tests on Raynauds patients before but have never heard of EM…goes to show how little is known about it! I used google to learn about it. I will have to look in my textbooks tomorrow at work to see if I can find anything on it.

I diagnosed myself. I found the site by accident. I thought my face, ears, and feet were coming from a medication or something. I put into Google, "What drugs may cause a malar rash, red on the tops of my ears that is very painful, and red feet that feel like they are on fire and extremely hot and painful" It brought up the Erythromilalgia site. The photos on the page looked just like me and the symptoms the person presented in the ER were identical to mine. I then took the site address to my doctor and she has been doing some investigation of the disease. I had seen at least 5 doctors from Orthopedic to Neuro. to Arthr. spec. and I was told I had red face syndrome, hot foot syndrome, red ear syndrome. In other words, they had no idea. I have also discovered something that is really helping my symptoms. Daily and sometimes twice a day, I rub my feet with really good moisturizing lotion, then with Ureacin20 cream (ask the druggist for it), then I rub my feet with a menthol rub (I use Flexal). Finally I put on loose socks. I wear the loose socks most of the time except in bed. I do all these things to my feet just before bed, pull off my socks after I lay down (my feet are greasy !!!) and sleep with my feet outside the covers with a fan blowing on me. My face gets red too, so I have to keep it and my ears cool. My ear pain is really awful. It feels like the tops of my ears have had the skin scraped off or they are cut open. They too are electric red. I look like a clown!!!!!!

Olivia, first if all, MY APOLOGIES. For some wonky reason I didn’t read the discussion topic and assumed that you had been diagnosed with EM already and just were lucky to have not had to deal with the more painful symptoms as of yet. I came off as insensitive, and I am very sorry for that.

Kudos to you for losing weight and striving to maintain a healthy lifestyle.
Definitely get yourself in to see a doctor ASAP. I was misdiagnosed for years, and even told by one doctor that I was making it all up. It took a rheumatologist to diagnose me. I am lucky enough to live in an area where my local hospital has doctors who see EM a bit more than in other parts of the country. It was nice to find compassion there instead of fear and confusion.

I wish you all of the best and hope hope hope that you do NOT have EM. It’s a beast that I would not wish upon anyone. Of course there is A LOT of support here, for which I am very thankful.

Hi. My EM started a year and a half ago with itching hands - when coming in from cold weather and rewarming them. The itching would about drive me NUTS. My hands turned bright red and swelled some. I took benadryl for mine too.

In Feb of this year, it started on my right knee as itching. I thought I had poison ivy - but it was February! In March, after a night out and some cocktails, both of my feet itched intensely - so much so that I couldn't sleep. This went on for hours every night. Sleep deprivation took me to the doctor - 4 of them. I was diagnosed by a neurologist in a major city who was familiar with EM. My feet itched for 3 months until it turned to a small area on my right foot that feels like an open blister when it hurts. Since April 1, I was started on amitriptyline 25 mg and it has been enough, so far, to depress the symptoms. I also get a stinging in my hands - on the palms. I've found that if I stay away from acidic foods, it seems to not flare.

I found that I couldn't wear tight shoes at first. Like you, I was pulling them off with my socks and my feet were itching like crazy. I have had to reconsider all of my shoes. Open sandals this summer was great but I don't know how I'm going to deal with the winter - this is my first winter in the Midwest.

I hope this helps. By the way, I'm an RN and my husband is a vascular surgeon - and he diagnosed me in March but doesn't treat EM, so I had to find someone who did. I took a lot of literature about EM to every Dr visit and took photos of my flares (bc they never flare in the doctor's office!) It really helps.

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