I am currently 23 and have just been diagnosed with primary erythromelalgia in my hands and feet and possibly face and ears. I have now been put on aspirin to see if that helps.
However, I now know that I have had this disorder since 17 when my fingers and palms would turn bright red and burn so much that people asked me what was wrong all the time! At that time though I was suffering from severe anorexia so doctors etc just assumed it was a side effect of this. I am no longer anorexic and unfortunately my symptoms have remained.
That said, the pain was not debilitating- it was usually just enough to cool my hands under the cold tap and then wait for the colour to return to normal.
Over the last 4/5 months however, my symptoms seem to have increased quite rapidly actually. My feet burn a lot (particularly at night and obviously with exercise) which they never did before and I am regularly getting a sunburn type flush and intense heat on my face and ears (again this is worse at night).
I am sorry for the long post but my question is, how did your disorder start? Did you start with minimal pain that eventually progressed to get worse? Is there any hope that I might be able to contain this with medication/lifestyle without ending up in crippling pain?
I’m sorry there are no definitive answers where EM is concerned.
In my case it probably crept up on me for ten years but then hit with a bang along with other symptoms and for two years my life was a misery. Then I saw a lovely neurologist who sorted out my biggest problem which was myoclonic jerks which accompanied every flare. Then an allergist put me on a double dose of cetirizine and I tried taking aspirin and flares reduced a little and the swelling a lot. 5 years since it started I have become more tolerant of flares and use all sorts of crazy ways to reduce them. I no longer feel desperate.
I know I am fortunate not to have had this to deal with when I was young but there are young people who have found medication to help and ways to manage. There are plenty of tips in quite recent discussions on how to improve things and my advice would be to eat as healthily as you can, not easy these days when our food is so polluted, and keep as generally fit as you can.
I have had EM for a year now. It suave about 3 months after I had my hip operated on. My symptoms may came on suddenly and were extremely painful. My feet were first and they would turn so red they were almost people at times. They burned so much my husband couldn’t touch them when he tried to help me. Then it went to my hands, then slightly to my face and ears. I went on all sorts of drugs. Now I’m on Gabapentin which has been helping a great deal. Red wine, heat and exercising make it worse. I am also in citerizine and an anti anti inflammatory for other issues. I don’t know if those have helped my EM or not though. I hope you find answers and some relief. Talk to a neurologist though. That was the only doctor that really helped me and who knew anything about this disease. Lotion has has seemed to help my flares at night since I get them worse then. It sounds weird but the flares dry out the skin and just keeping it lubricated seems to have helped. You will find answers, just don’t give up.
Getting a diagnosis is the first hurdle with EM and for that matter any serious or especially a rare disorder can be so hard to get diagnosed - but once that frustration is over with (it took me 7 years to get diagnosed) - then it is on to getting some help and relief for the symptoms and the pain - and with EM it is very individual as to what will help and what will not.
Welcome to the EM support site/group - there are a lot of sufferers here that may be able to offer some advice - I am currently on 150mg Pregabalin (Lyrica) twice a day and it is helping to a reasonable degree but I am on a very restricted diet as I have found many foods, processed and organic that cause flare ups and I have to avoid them if I can and pay the price if I don't ...
I wish you sincere best wishes with finding the things that will help you with your EM ....
For me it started with just mild redness and heat over the last summer. I stopped being able to wear sandals that touched my toes. In December it progressed to very strong night flares that only let me sleep 1-2h per night, then I sleep 2-3h more in the morning. I must have my feet in front of the fan most of the time now. I get allodynia and hiperalgesia during the flares. Sometimes I have some burning and some throbbing pain from the vasodilation. Exercise (as mild as walking around the block in cool weather) and heat cause flares. Recently (February) I noticed that my hands are getting flares too but much less often and less severe than the feet ones. Magnesium (~260 mg a day during 2 days) caused swelling that never went away completely.
Thank you so much for taking the time to reply and all your advice has been great :) I will definitely take that on board :)
It definitely seems like this is a completely unpredictable condition :(
For the last few years the symptoms have been so mild that I didn't even bother to go to the doctor. However, now having moved to my feet and face, I am pretty worried about its progression.
Tarsius, it is now affecting my sleep too. I can go to bed at a pretty normal temperature but I keep waking at around 3/4 am feeling like I am burning up so that is pretty miserable too :(
I live with my parents at the moment and they are pretty optimistic that this can be contained with medication/healthy lifestyle and vigilance but right now I just don't feel so sure.
And sorry, I just have one more question; can the condition cause a constant ache in the leg?
I have been having what feels like a deep ache in my left foot and calf that developed pretty much straight after I had had 3 nights when the soles of my feet were burning. I have been evaluated for all serious medical conditions (blood clot etc.) and had blood tests and the physio said there was nothing significant.
But, I just can't understand it as I have not injured it and it does not seems to be clearing up.
It may be totally unrelated but any ideas are welcome :)
I also have pain on my ankles/legs/feet but mostly when a light pressure is applied (I try to avoid anything stronger but as I am a bit clumsy I eventually bash my toes and that really really hurts). I did a venous doppler (that was fine, like all the tests so far, oddly enough) and that required squeezing of the legs - that hurt so much! No one gave me a proper explanation for that. The skin on my feet gets really dry, I think from using fans so much - it looks like my feet are covered in a white powder. I apply moisturising cream twice a day (not specifically for feet as those tend to be greasy and I think it would lead to insulation and make it more difficult for the heat to escape).
I cannot take Aspirin or pain killers generally. I think my ethromelalgia started many yearas ago but has only, relatively recently been diagnosed. Burning pain, 24/7 and during an ecsascerbation bright red in colour, swollen and very painful. At worst cannot get either stockings or shoes on. Twice have been hospitalized as this was wrongly diagnosed to be deep vein thrombosis. Prescribed many creams over time.
What I find most useful is a pressured water type spray, and high level elevation of legs. With hand spasms I find it useful if someone else can apply pressure to the fingers. With regard to the feet - before I heard about my ethrithromelalgia , I used often to have to stand on the big toe to make it lie down, or walk on a cold floor. I hope this might help. For itching, I use liquid Eurax which can last for 3 - 4 hours. I also find spray on Magnesium very useful for muscle cramps.Best wishes.
I also have primary EM. Some of the things that have really helped me are:
300 mg Gabapentin - 1 each evening
1 baby aspirin a day
Magnesium Glycinate 400mg - 2 per day
Aveno lotion - Really helps prevent the feet from dehydrating and itching esp during the burning at night. I sometimes keep it in the frig to keep it colder.
Avoiding alcohol
very thin ballerina style socks - ( low cut liner socks) - to protect the feet in MN cold winters. - the more cotton in them the better -
wear as cool of cotton clothes as possible - possibly requiring you to change several times a day depending on where you live as your body heats up thru out the day - letting my body over heat at all increases flares at night - I have to bring shorts or skirts along where ever I go when I have to put on pants to go out in the winter.
keep your house very cool, esp at night - my family has learned to wear sweatshirts and lots of blankets to bed.
Hello Mkl.
I had light symptoms only in my hands for a good 10 years without knowing it was even a health issue was just mild pain with raised blood vessels and red/ purple discoloration. This wouldn’t last long seconds to a few minutes so I just thought that’s weird and went on about my life.
Quite quickly over days maybe a week or two it became intensely painful in my hands and started in my feet and face. This intense pain kind of crept up my arms and legs. It felt as if my limbs would explode. I was genuinely worried about when whatever was happening crept up to my heart what would happen? ??? Anyway it’s been 5 years and nothing crazy I had feared happened so I feel safe in saying my crazy fears won’t ever happen. It’s normal to worry about every new strange symptom especially with severe pain or feelings as if your veins would explode.
That said most people here have more severe cases while those that have it mild or have had it severe but have been treated and they responded well enough to go back to normal life are off doing just that. So you will get a skewed picture of what this condition entails. A lot of people never progress to other body parts or have worsening pain. Some have no pain at all! I know nonstop flares can cause stabbing pain as well as cramps.
Pain or other symptoms can be caused by another undiagnosed Condition even with good test results as they aren’t perfect and some conditions show up in blood work later up to years after symptoms present so it’s important to get annual blood work for the same conditions you have already been tested for just in case.
I hope you find something that helps you soon. My best trick is keeping my house cool all of the time. My best temp is 56 to 60 . I still get flares at these temps at night and with activity but they are significantly reduced and I can move around and do more in this environment. Different people are helped by different temps and some unfortunately aren’t helped by this at all.
Take care
I am really sorry for not replying earlier. Thank you so much for all of your advice, I really appreciate the help :)
My doctor has told me that I have most likely got primary erythromelalgia and something called acrocyanosis. From my understanding they are both neurovascular disorders but are opposites of each other.