Hi everyone,
I am not sure if I have EM. I have been getting rashes on my knees and lower legs and feet on and off for 5 years. Over the past few months I get them every day. I have noticed that heat, exercise, alcohol, and standing for more than 5-10 min triggers the rash. More recently when I go for a fast paced walk I get burning pain on the bottom and top of my feet and pins and needeles feeling, my skin is also red hot. I just got a ton of blood work so we are seeing if something else could be causing this but I have been having rashes like I said for 5 years so I think if I had an underlying disease/disorder I would have other symptoms by now? Anyways I’m becoming quite depressed about this and reading that it could potentially get worse and not being able to walk without my feet burning is awful. Praying that this just goes away. 
That does sound similar to erythromelalgia. Are symptoms eased or eliminated by cold and elevation of the affected limbs above the level of the heart?
Yes, the rash quickly goes away after sitting and elevating. I am also now getting rashes on my ears and side of face, has any experienced this? My doctor does not know what EM is and seems to be dismissing it. But these rashes are getting worse (granted I have been EXTREMELY stressed and anxious lately so I’m sure that’s adding to the frequency of the rashes) it seems like every time I stand I start to feel the heat of the rash starting 
it’s awful. I just want to feel normal. I’m only 26 I can’t imagine living with this for the rest of my life. Does anyone have any advice of supplements or meds to try? I am trying LDN next week.
Stress definitely makes symptoms worse. One of the few times I’ve had a breakthrough flare since starting mexiletine therapy was when my father died unexpectedly and I went to the ER to view his body. Last week my dog died and, while that was also traumatic, I fortunately didn’t have any flares. My symptoms have been on a long, slow ebb for years. You can read about my treatment history in my prior posts.
Another possibility to consider, given your symptoms, would be POTS (postural orthostatic tachycardia syndrome).
Just to answer this question, facial and/or auricular EM is uncommon but possible.
@graceee06 Hi,
I’m also getting rashes, I would rather call it redness on my ear,the side of the face, which I sleep on, even nose sometimes Every side of the body I turn on when I try to sleep , flares immediately, even my back, neck. It is awful lately. I haven’t slept a minute for the last two days, even with a bunch of pills. My EM is progressing rapidly in last two days, my legs get severly swollen and red as soon as I stand up. In bed my upper legs are burning, red and painfull, but my feet are cold as ice. As soon as I put my socks on, my feet get red and hot also. My whole body is burning inside and at the same time I’m freezing, even get goosebumps on my arms. If I am covered I’m hot, uncovered I’m freezing, I can’t find a way to get to sleep. I think the trigger for EM worsening, was a letter I received two days ago from health insurance company to go to work even though I don’t get official diagnosis and I’m waiting for dermatologist and neurologist appointment and I’m really not able to work. I would rather work than deal with this stupid doctors. I can barelly stand, my EM is spreading to my soles of feet also and I haven’t got a proper treatment yet. I get slow dose of IV lidocaine (25mg) now ant then by pain medicine doctor, he refused to give me higer doses, Mexilitine is not available, nothing is available in this stupid country I live in (Slovenia), ketamin and amytriptilin cream is not available. He put me some capsaicin cream on and my legs were burning even more. I’m so frustrated, I can’t accept this ilness, I’m like a prisoner in my own flat, I can’t go anywhere with this painful burning legs. I want to be an independent person like I used to be but I’m about to lose everything. I’m devestated, I want my life back. I know how you feel I’ve been experienced EM burning symptoms for about 7 months and I’m also praying for this to go away. In my country only miracle can improve my symptoms. You are lucky to live in US, you will get a proper treatment sooner or later. Have you experienced any swelling with burning? I’m sure your symptoms improve, it seems like your EM?! is progressing slowly. Don’t lose hope, you have a great chance to find a good specialist. Wish you luck.
Does LDN mean low dose naltrexone? I’m sorry I sometimes get too emotional.
Frankie
Carter, how are you dealing with your loss? I hope you are doing better! I’m glad you didn’t flare. Frankie
Hi Frankie,
I’m so sorry your going through all that! I don’t have much swelling now just a little
In my feet. I am sure all the stress and anxiety I have been experiencing lately has been contributing to the frequency of my rashes. It’s so hard because I have extreme health anxiety and I read that EM is sometimes caused by an underlying disease, which sends me into overdrive and panic mode thinking I may have an autoimmune disorder or something worse. I’m trying to take it day by day and not think about the rashes. I’ve been attempting to meditate and seeing a therapist for the first time next week.
Carter,
So sorry for the loss of your father and dog. Unfortunately I understand what your going through I lost my dad a year and a half ago and I think it has contributed to my rashes getting worse.
I’m doing OK. I picked up my dogs ashes yesterday, which was somber and sad. Otherwise I am just trying to do things that are constructive and not think about it. I replaced the old spindle hard drive in my iMac with a new solid state drive. That was a complicated procedure. Now the computer works like new though, so that gave me some enjoyment and was a good distraction.
Actually, it sounds like we both lost our dads around the same time period. Mine died in late 2017.
If you’re having trouble finding a doctor familiar with erythromelalgia, you might want to try The Erythromelalgia Association’s Physician Directory.
Yes my dad died Jan. 2018…thanks for that link looks like the closer doctor to me is 50 miles away. Can you tell me a little about your EM? How long have you had it? Has it gotten worse or improved? What meds/supplements have you tried?
-Grace
I had explosive onset of EM in early 2015. I was initially misdiagnosed with Rheumatoid Arthritis. My primary symptoms were (and remain) at my knees. I was the one who challenged the RA diagnosis and proposed EM as a more likely cause. I was referred back to a hematologist who had previously treated me for anemia 18 months prior.
(This paragraph is very specific to me.)
I proposed to my hematologist that we try phlebotomy (blood letting) on the basis of the following 3 conditions: a.) I had noticed pushing fluids (namely water) helped alleviate symptoms somewhat, b.) My hematocrit had elevated slightly out of range (53%) and could afford to be reduced, and c.) Erythromelalgia can be associated with myleproliferative disease (polycythemia vera) in which there is an overproduction of red blood cells. She thought this was a reasonable proposal and ordered a schedule of phlebotomies. For reasons unknown, the phlebotomies disrupted and altered the disease progression. My symptoms improved and never again were quite as bad as before I had the phlebotomies. I was able to return to some semblance of functionality (prior I wasn’t even able to walk around the block without my knees burning bright red and after could run a couple miles provided the temperature remained cool). It provided improvement, though not quite the level I was looking for, so I kept looking for something else.
Next I tried propranolol, which is a beta blocker. I saw it on a list of medications sometimes given for EM and happened to have some of it in my closet, prescribed to me to control nerves in stressful situations. I found that helpful, though again not nearly enough, so I kept looking.
I went through a few doctors unsuccessfully before finding my way to one that had treated EM a few times before. He is an anesthesiologist who specializes in pain. It was his idea to put me on mexiletine, which is a sodium channel blocker. I’m not sure he really expected it to work for me, since he thought I more likely had CRPS (Complex Regional Pain Syndrome). He did a differential diagnosis between EM and CRPS by writing a prescription for mexiletine (which might help if I had EM) and ordering a scintigraphy to look for the type of bone erosion you’d see in CRPS. As it turned out, the bone scan came back negative but the mexiletine turned off my symptoms within 36 hours of taking the first dose. It was clear mexiletine was a home run for me by about the 3rd or 4th day. That was August 1, 2015.
That’s my story. What remains has been on a slow ebb for the past few years. It does seem to be very slowly going away. With mexiletine the worst it gets is that I feel it trying to start. There is usually a reddish or purple tint to the affected areas when I stand but no sensation associated with that. The affected area typically remains cool to the touch. When i’m seated affected areas look completely normal. For a few years after I would avoid wearing regular socks, because there seemed to be some minor symptoms in my feet, but i’ve returned to wearing regular Nike crew socks even on warm days. My feet rarely feel too hot now. I’ve seen a substantial decrease in residual symptoms since I resumed cardiovascular exercise a couple months. I had fallen out of doing that for over a year after my dad died. Now that i’ve resumed it has really seemed to push me closer to normal than I’ve been since symptoms first started in January 2015. Oddly, that seems to correspond with what others have said. If you can get to a place where it’s tolerable, exercise seems to be beneficial.
So, don’t despair. Just stay focused on finding the solution that will work for you. It’s out there.
wow that’s gives me hope knowing you found a medication that works for you and your EM is improving! I will talk to my doctor about mexiletine. Do you have any side effects from it? I don’t like taking many medications but if it can help me walk comfortably I’m willing to try it.
Mexiletine causes heartburn for me if taken with inadequate food. I had never had heartburn before and didn’t get that right away. I took it for about 6 months before that became an issue. About 2 months ago I switched from three times daily to twice daily and have not noticed a difference.
I’ve read others who say it causes nausea and all sorts of negative side effects, enough so that they can’t tolerate it. I’ve not experienced that.
I’m so sorry you can’t seem to get help. The medicine that has helped most is cyproheptadine. I pray that’s available and will help you.
I don’t know that there is evidence to support the claim cyproheptadine is the medication that has helped “most”. No one medication has been shown to be effective in all patients. NORD (the National Organization for Rare Diseases) says the following about pharmacological treatment of erythromelalgia:
For many patients, medications are available that can help to reduce symptoms.
Topical medications may go a long way towards helping with symptoms. The use of lidocaine topically such as in a lidocaine patch, and topical preparations designed to block the opening of sodium channels in nerve (amitriptyline combined with ketamine for example) have been described to be helpful in many patients, either alone or in combination with oral treatments.
Oral medications include calcium antagonists, magnesium selective serotonin reuptake inhibitors, tricyclic antidepressants, gabapentin or carbamazepine, antihistamines, clonazepam, misoprostol, cyproheptadine, and others. No single medication works for all EM patients, and some trial and error may be necessary. Some individuals with EM require lower doses of these drugs, and when started at higher doses, side effects can occur. Sometimes a combination of medications is more effective than one drug alone. Experts indicate that through such measures and careful ongoing monitoring, many affected individuals may obtain significant benefit.
Note: Mexiletine is the oral analog of lidocaine.
Hi Grace - I hear your frustration and anxiety. No one wants to live like this. I also worried if I’d ever get my life back, but I did. I’ve had EM for about 18 yeas now and lead a fairly “normal” life. I can’t walk far or stand for too long or be in hot climates. But I can get out and shop, swim, travel, etc. I just have to manage not getting over heated. I know you say there’s not much help in Slovenia, but could you get a pretty simple drug, Amitryptyline? Not the cream, just the pills? It’s a pretty old medicine so maybe they have it. I take just 10 mg/day and it makes a BIG difference. Be careful with capsaicin. It made my flairs terrible! I don’t know how old your post is but I hope you’ve found some relief.
Hi Lynee,
I believe that is Frankie that is from slovenia. I am from Massachusetts. Haven’t tried any meds yet for this. I just started to see a different doctor who did a ton of blood work to see if I have any autoimmune problems or anything else that could be causing this. I am SO nervous for my blood test results thinking that I could have some terminal illness or something. Hopefully I just have primary EM. I started low dose naltrexone two days ago which can help with a host of different things (my doc isn’t sure about the EM) but thought we should give it a shot. I really just want to be normal again! I see people walking around in shorts and catch myself looking at their legs wishing mine looked like that! (My lower legs get flares often). I really think stress/anxiety plays a big role in this disease.
Well I get how you feel too! I always look at people’s feet and marvel that they’re not in pain! I’m very surprised that 1st med they give you is what’s used to help people get off opiate addictions. Ask your Dr about Amitryptyline. It’s an older medication & one of the 1st ones most drs I know try for burning pain. I know a lot of people who have found relief with it at a low dose. Just a thought! Hope something helps!