Living With Erythromelalgia

I have had symptoms from erythromelalgia (EM) for about 15 years now. It got really bad about 5 years ago and now I am on disability. I was diagnosed at the Mayo Clinic. Like many others, I had figured it out for myself, thanks to the Internet. Getting the official diagnosis is helpful for getting doctors to listen to you although I haven’t found any medication yet that has helped.

EM has changed my lifestyle radically and trying to be out of doors and active is difficult. But here are a few things I have been able to do.

In the summer I take my dog to the nearby Minnesota River for walks. I have found an area where I can walk along the shore in about 6 inches of water. The water is kind of gross, but it cools my feet and I can experience nature once again.

In the winter, when temperatures are between 0 and 30 degrees, I take my dog to the park in rubber boots. They are plain, unlined rubber and I wear very thin socks with them. I can walk in the snow for up to an hour before my feet start to burn.

This one is really kind of goofy but here goes. On an overcast summer day I can do some gardening if I stand in a plastic kitty litter box filled with cold water from the garden hose. I just tip it over and pour the water in the grass or garden when I am done. No need to lift the water.

I am fortunate to have rubber floor mats with a lip in my car. I will pour a little cold water on my bare feet while running the AC to keep my feet cool. I wear open, waterproof sandals so I can pour water on them, too.

I recently attended a class/support group for people with chronic health problems. It was very upbeat and helpful. This illness is very isolating so getting support from people with other illnesses is great. It was about the only social thing that I have done where I didn’t feel embarrassed about my constant use of ice packs under my shoeless feet.

 ~Liz 

flamefeet flamefeet
51-55, F
7 Responses Mar 11, 2010

What was the name of.the doctor at mayo and in what department my wife has em and I need to find her help did they treat you too.

Dr. Mark Davis in dermatology is the expert who sees all the patients with EM. First the patient has to be seen by some other doctors to rule out other conditions. They treat people very well at Mayo. You don't feel 'dehumanized' the way I have felt with some other doctors.
After the dx I opted to be treated at a pain clinic near my home rather than travel back to Rochester.
Good luck.

I am curious on how to apply for disability and what percentaage I can file for. Anyone on this dission board know how?

I have it to EM I my feet turn bright red and hot to the touch sometimes they turn purple. On a good day I feel like I can do anything of course I have insomina along with it so when I end up staying up all night three days in a row pain city here I come. My boyfriend found the EM on the internet thank god for him and we took a brochure to my doctor he looked at the brochure his nurse handed him he asked "Whats this,"he said and I said "An Answer." He put me on cymbalta and Lyrica they are both anit-depressants and they are used to help with pain because of coruse both Nerutron and evilal didn't work worth excuse my language a ****. So now I just am in pain even on my good days I still have bad its just not as bad. I am in constint reminding of my diease/disorder its never far from my mind I get depressed and sit here and think what could I have done different to help myself or take care of myself better that I could have prevented this from happening the answer really is nothing absoultly nothing.

Those are all great tips! Thanks for sharing.

Hi, I am Betty Bowles from Eagle Grove, Iowa. bmbowles@goldfieldacess.net. I have had Erythromelalgia for seveeral years My greatest tip is when my feet get hot & burn, I spray them<br />
with on the top and bottom with Athletic Foot Spray. It is very cold and cools them quickly.<br />
there is no need for ice water pr ice packs.

Hi liz and EJC9121-my sister has EM and has had symptoms for about 20 years. It was about 15 years ago that she was diagnosed on a fluke by her derm she had at the time. She had just come back from a conference where rare diseases were discussed. Nothing helps her really anymore and like you both, her life has been changed drastically over the years. The chronic pain and feeling of isolation as slowly chipped away at her life. She has never had health insurance because she has been self employed for many years and could not afford it. Right now she is trying to get disability, but has been hampered by the dearth of doctor visits and hence absence of current medical records. Do you have any pointers for her on how to get her disability approved?

I also curious on how to go about getting disability for my EM. Let me know if you find out anything.

i applied two yrs ago and got denied three times! so finally i got a lawyer who handled everything until my court date. the day before i was scheduled for my hearing she called and told be that the judge had called her and said that after he reviewed the case he accepted it! i didnt even have to go in which was great cause i was very nervous!! lol. but what i did when i didnt have insurance was go to the emergency room everytime i got too bad so i had medical evidence to show. the hospitals i went to had low income carrities that paid the bills since i had zero income. but i just stuck it through and tried to stay strong! i did everything i could to try and help my case, even looked up alot of info on the internet thats how i found this site.

Wow it really is great to find someone with the same problem as me! i do all the same things you said help you. in the summer i usually just sit outside with the hose spraying water on my feet. i also wear sandles year round no matter the weather! i would do anything to find a treatment for my problem. its very hard to keep a social life when i cant walk anywhere and i dont drive either. but i feel better to know that im not alone.

You are definitely not alone! I have had em my whole life and I'm almost 21 years old. I'm not sure if any of u are aware of the foods that cause flare ups. Message me if u need help, some of us are different than others so not everything works for us all but it's worth a try :)