I Have Erythromelalgia

A Erythromelalgia anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Erythromelalgia. You're not alone. 72 People

    Newly Diagnosis

    Hello, My name is Joanne and I am new to EM.   Even though it has been months and not years that I have been having symptoms I honestly don't know how to cope with it.  It is life altering beyound my wildest nightmares.  I can no longer sit at a little league...
    thunder3702 thunder3702
    5 Responses Sep 13, 2010

    Since I Was A Kid

    My first flare ups started when i was young, i couldnt stand up long enough for my mom to do my hair. My fet would turn red or even black. We called it "bad circulation" doctors literally laughed it off as nothing. It didnt really burn or hurt back then. Sometimes toes would go...
    1 Response Jan 9, 2013

    What Works For Me

    Hello, My name is AMy and I discovered last year that my problem was erythromelalgia.  I want to share with everyone what works for me because, it might help others to deal with it. History:  I moved to CT 12 years ago from the Caribbean and soon I started having...
    pogibionsi pogibionsi
    31-35, F
    8 Responses Feb 6, 2010

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


    I started out with tingling in the toes, back in 2007. I now have burning  in both my feet. Been to several Dr.'s, and just last yr. 2011, the Dr. told me I had Erythromelalgia.  Been on different medicines for it and nothing works. I am also a type 2 diabetic. the only thing...
    momofdja momofdja
    Feb 24, 2012

    Best Specialist For Erythromelalgia? Mercury? Grover's Disease?

    I have been suffering from this for two years. My doctor told me it was in my head and I was starting to believe him. I was really starting to feel like I was crazy! I suspect my friends and family were thinking the same thing. I searched blogs and articles online night after...
    sarahdtn sarahdtn
    31-35, F
    3 Responses Feb 11, 2011

    It Took Over 2 Yrs.....

     hi, i had been suffering from pain im my hands for a while and it has takin over two yrs to figure out that i have EM.  the pain is in my hands and arms....i have lost the ability to use my hands anymore....the pain can be unbearable....i cant be in the sun it causes my hands...
    mslovely32 mslovely32
    1 Response Jan 20, 2011

    I've Lived With Em My Whole Life, Almost 21 Years

    I am almost 21 and I've had Erythromelilgia my whole life! I mainly get flare-ups but I also get pain kind of like arthritis. Something I have learned about my type is mainly certain foods such as #1 red meat it really makes me flare-up and for days! Also caffeine, yogurt,cheese...
    KatherineMelendez KatherineMelendez
    18-21, F
    6 Responses Mar 22, 2012

    I Have Em Too.

    dose anyone take a pill that works for the pain and won't make you crazy like lyrica?
    jodymay jodymay
    51-55, F
    1 Response Jun 27, 2011

    New EM Diagnosis

    For many years my feet have turned red and became swollen in the summertime. I paid little attention to it. Several years ago my hands began turning very red during the summer and when I went from a cold environment to a warm environment. Beginning in early 2012, my feet had...
    DoxieMommie DoxieMommie
    51-55, F
    1 Response Feb 2, 2013


    hi i have erythromelalgia, recently been diagnosed. i suffer especially from my hands (palms), especially in warmed places (with hitting), at evenig and while excercising or getting stressed / angry. my hands are red and swolen, itchy and tingeling. i'm now taking plaquinil as a...
    inbar1910 inbar1910
    Dec 18, 2011

    Finally - I Figured Out What Has Been Driving Me Nuts For Years.

    I have suffered from this disease for so many years that I have no idea how long it has been. All of my doctord figured that maybe it was Raynauds. Now I know that I suffer from both. The fact that I, once again, had to diagnose myself, makes me wonder how some of the doctors I...
    lsrenaski58 lsrenaski58
    1 Response Jan 13, 2011

    Newly Diagnosed- Is It Really Em?

    Starting about 2 months ago, I got slight tingled and burning in my feet, that turned into burning in my hands. I went through a period where I was constantly icing my hands and feet. I learned the hard way that this was not a good idea when the skin on my hands started to...
    Hkern1 Hkern1
    1 Response Aug 10, 2011

    Help Me Please

    I have been diagnosed with erythromelalgia and Renaud's disease....these are in my right foot..my foot burns/tingles across my toes, the top of my foot and the pad of my foot..my ankle is very weak..i can not stand or walk for long periods of time..and i can not do the job i was...
    sandeesland sandeesland
    Mar 19, 2012

    Does My Baby Have Erythromelalgia

    Hi, I hoping this may sound familiar to someone so we can start to get some answers for my baby. she is 6 months old and for 3 months has been getting episodes where her legs/feet (sometimes hands/arms) go bright red and purple and are burning not to the touch. This lasts...
    lizzkelly lizzkelly
    2 Responses Jun 13, 2012

    My Diagnosis

    Hello, I am a young mother of 2 wonderful kids. I was working last year and going to school 4 days a week and doing clinicals and theory for nursing. I would take the kids swimming on the weekends to the public pool. One day I was feeling shaky thought it was from being in the...
    hopingforacure22 hopingforacure22
    31-35, F
    3 Responses Jan 6, 2013

    Em Study

    Hi Everyone, I wanted to tell you about a research study being conducted for Erythromelalgia patients.  You can find more information here:  www.rarediseasestudy.org
    Medici Medici
    Jun 22, 2010

    Erythromelalgia With Petechia

    I have had mild swelling and redness in my hands and sometimes feet when I got overheated, worked with my hands or walked a lot or ate to much salt for as long as I can remember. I did't realize this was unusual, I thought it had something to do with being fair skinned. I haVe...
    Sadfeet Sadfeet
    1 Response Mar 11, 2011

    Wanting Info On Erythromelalgia

    I have had erythromelalgia since August 2008 but didn't know that was what it was until a few months ago.   I have been to 7 doctors and the last one knew what it was.  I have been on so many different medicines.  My feet turn red on the bottom and the top of...
    56-60, F
    14 Responses Feb 3, 2010

    Raynauds & Erythromalalgia

    Hi I have a son that was born with Raynard's & Erythromalalgia, we used to live in England and my son was in constant pain and was a prisoner in his home for the first 6 years of his life. He used to scream in pain from 3 to 5 hours a night, if he went outside the house he would...
    madeonmagneticweddings madeonmagneticweddings
    1 Response Apr 6, 2011

    Erythromelalgia And Rls

    I have had RLS (restless leg syndrome) for years but in Nov. 2009, I was standing in line at a department store checkout and my legs started going numb and I felt bee stings. I started kind of walking in place to see if it would go away and the lady standing behind me asked if I...
    omagoodness omagoodness
    46-50, F
    1 Response Dec 9, 2010
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