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Member Stories

Read people's experiences with EM. The road to diagnosis is often long and coping with EM can be difficult. People with EM all have a story. These stories also will appear in an upcoming FootSteps.

Danni Wortmann, Hartington, NE, USA writes:

Prior to developing erythromelalgia  I enjoyed a busy life raising our children and  helping my husband on our farm. We did a little traveling and I enjoyed walking several miles a day. I used to do calligraphy as well. I enjoy swimming and still am able to do this a few times each week in an indoor pool as I am unable to outside in the heat for too long.
Having the terrible burning pain, not only in my hands and feet but full body, has changed who I am and what I do. Making plans too far into the future is hard as I never know how I will feel.
I used to love spending time outside in the summer. During the winter I loved to ice skate but am no longer able to do this.
My husband Ron and I have been married 34 years and we have a farm in Northeast Nebraska. We raise cattle, hogs, corn, soybeans and alfalfa. I’m grateful my husband is a very hard working, loving and considerate person. He has helped me tremendously in dealing with EM. Our son Nathan is a firefighter/paramedic in Norfolk, Nebraska. Our daughter Katie is married and lives in Omaha, Nebraska where she works as director of marketing and public relations for Opera Omaha. We are so blessed that our children love their jobs and are successful in what they do.
I have a Master’s degree in Nutrition from University of Nebraska at Lincoln and have worked part time as a dietitian. With this EM, I now focus on things I can do, such as; visiting and calling friends and reaching out to others in need. 

(Danni is a TEA volunteer and in charge of mailing the bookmarks.)



Elisabeth Antoine San Francisco CA USA writes:

I am 43 years old, a former dancer and Pilates instructor, a cookbook author, and a mom to a 6-year old boy. My nightmare began in the fall of 2010 when a pair of OTC insoles caused a pinched nerve in the arches of my feet. My podiatrist diagnosed bilateral tarsal tunnel syndrome (TTS), but his expensive custom orthotics only made the pain worse, as did acupuncture. Before long the pain spread to my heels, and I have not been able to walk since September 2011. 

My neurologist dismissed the TTS diagnosis, since all my tests were normal, and he prescribed nortriptyline for the pain. Within a few days of starting the drug, I developed the classic symptoms of EM. It came on gradually but got progressively worse following certain treatments. I tried hyperbaric oxygen therapy in hopes that the increased blood flow would help my nerve injury; instead, this caused my EM to go from mild to severe. I went from using cool washcloths and a fan to soaking my feet in cold water almost 24/7. I tried a number of medications and supplements; none helped and some caused my flaring to worsen significantly, particularly the antidepressants. The worst reaction of all was from oxycodone, which caused severe edema from my ankles to knees. 

I had been bedridden for almost a year when I finally found some relief. In January I had my first Qutenza (8% capsaicin patch) treatment with Dr. Wendye Robbins at Stanford. Despite the epidural anesthesia, it was extremely painful—but it has given me at least a 50 percent reduction in my EM symptoms! Finally, I could get rid of my water buckets and ice packs and am now using only a fan for cooling. My feet still flare but much less frequently and with almost no pain. I can even sleep with my feet under the sheets again! Even though my original nerve injury is not yet resolved, I feel grateful to no longer be in constant, excruciating pain. Soon I will undergo my second Qutenza treatment—hopefully I will see even further relief.
 

Meg Edelson writes:   Let's Face It - Facial EM

While considered a rare disease, a significant number of people suffer from Erythromelalgia (EM) and have traditional symptoms on their hands and/or feet.  A smaller group has Facial EM symptoms.  And then there are people like me, who have a severe case of Face only EM.  Facial EM is characterized by severe flushing of the face and ears that is red and hot, along with burning pain.  This pain is excruciating and much worse than childbirth, surgery or anything I have ever experienced or could ever describe.

When my Facial EM symptoms began, I sought medical help because of the immense pain.  Frequently misdiagnosed, I was told I had rosacea, psychological or hormonal issues to name just a few.  That was until a doctor observed me in the midst of a flare.  She rushed me to the laboratory to test for illnesses that have facial flushing as a symptom, including carcinoid syndrome, lupus, dermatomyocytis, pheochromocytoma, porphyria, and mastocytosis.  At that point, I was given the blanket diagnosis of vasomotor instability, and thus began my quest to find out what was really wrong with me.

My flushing started after taking a medication and I was told it would subside when I stopped the medication, but in fact the flushing continued to get worse.  The pain was increasingly excruciating and soon my cheeks were red, hot, swollen, throbbing and burning.  Over a brief timeframe, the symptoms spread to my entire face and ears and eventually onto part of my neck.  Most new doctors stared in disbelief, saying things like, "my, what an unusual presentation".  One even patted my head because he felt so bad for me and had no effective words of comfort.  After searching for answers and testing negative to the assorted flushing disorders, I traveled to The Mayo Clinic in Rochester, MN where I was evaluated by the autonomic neurology group.  Mayo discovered that in addition to the severe and painful flushing, I had also stopped sweating.  Both sweating and flushing are autonomic nervous system functions and these tests constituted proof that something was "officially wrong" with me, and that I did not just have a case of rosacea, nor was my issue psychosomatic or hormonal, nor any of the other dismissive diagnoses given me early on.  Finally, I had a diagnosis of "Idiopathic Erythromelalgia-like Syndrome of the Face along with Total Body Anhidrosis".  While still vague, I can't tell you how much this diagnosis meant to me, as I had to forfeit my career and social life, due to my inability to function from the overwhelming pain.

So, what is the pain of Facial EM like?  It's hard to describe, but it feels like a cross between the worst inside out sunburn you can imagine and putting your face directly into a fire - yes, for real!  Like most Facial EM patients, I have edema too, and sometimes it feels like my face is going to burst open.  Add to that the intense feeling of humiliation because it's on my face – the face is a person’s calling card, the way people recognize us, so having my face altered so dramatically became devastating.  My face morphed and disfigured after only a few months of Facial EM.  Now, I no longer look like me, even when I am not flaring. 

Moreover, for the first 9 years of my 14 year illness, I was so severe that I was bedbound.  I had to keep my body warm, while finding a way to cool my face and the bed was the only effective method.  I could no longer do the basic tasks in life that most people take for granted, such as walking outside, talking on the phone, cooking a meal, and folding laundry.  The smallest bit of heat or movement sent me into unrelenting pain.  I was frequently on fire for 24 hours a day with no relief and could barely sleep.  I know many of these symptoms are universal for all people with EM.  Thankfully, due to my persistent quest for help, I found a few things that gave me some intermittent relief, meaning I still get flares every day, but I get brief periods in between where my face settles down enough for me to walk around within my home which we keep at approximately 58 to 60 degrees Fahrenheit.  Some of those things include medications, supplements, Five Element acupuncture and VBeam Perfecta Laser treatments.  However, my life remains extremely limited as I still cannot do the aforementioned daily tasks without paying a highly painful price.  And, I gave up all basic social tasks such as recently missing my only daughter's college graduation because of the travel and warm weather. 

On a bright note, I find being in the car tolerable because I can wrap my body in coats and blankets, while cooling my face with the Air-Conditioning.  To compensate for all I cannot do, my husband, daughter, dogs and I take lovely rides where we order take-out food and have picnics in the car. 

When one becomes disabled in the way I have, discovering new ways to find joy in life is essential, or it’s too hard to continue living.  Yes, there have been countless times when the pain was so agonizing and the quality of my life so miniscule, that I truly felt I could not live another day.  In those moments of despair, I realized that my immediate goal was to make it through the next minute and not worry about getting to the next day.  With the support of my husband, daughter, family, friends and online support groups, I have managed to endure what often feels like a fate worse than death. 

I would never want to diminish the struggles of another sick person, and yet the fate of a person with severe EM (Facial or otherwise) is unique in that the hope of getting well enough to function is less likely.  We are suspended in this place of not getting much better and not dying.  Yet, this lack of hope has never stopped me from trying to get better!  For those who know me, they recognize my type “A” personality, tenacious in every fiber of my being, so I continue to seek out new doctors, new treatments and new medications in hopes that someday I will have an improved quality of life.  I know I will never go back to being the woman I was before Facial EM.  I certainly will never have my original face.  But I have reasons to keep trying and so I must.

Please feel free to contact Meg at meg.edelson@prodigy.net

Irene Kellough writes:  As a new TEA member and am so happy to know that I am not alone with EM. I am an 89 year old widow living alone, but fortunate to have family nearby.  My EM started about six years ago.

I noticed a TEA member once asked if anyone experienced EM stopping during an illness or injury. When I fractured my right ankle two years ago, my feet stopped hurting for about 10 days, then returned worse than before. Now I flare constantly. My right foot and ankle where the skin was damaged is very sensitive, dry, swells more and stiffens when I stand. I also have heel cracks and toenail problems, heavy freckling on the front of my legs, ankle to knee, darker on my ankles, but no discomfort there. I wonder if others experience this.

I’m using creams, a camphor, as recommended by some members, fans, air conditioner and cool wraps at night, but, sleeping is still difficult. I keep my shoes and socks in the refrigerator.

I enjoy reading and doing crossword puzzles. I have been volunteering at a nursing home for over 15 years. I like to speak on the phone with family and friends. I also keep busy with housework, grocery shopping, and doing exercises in my home. And, of course,  I spend a lot of time trying to keep my feet cool…a full time job!

But, I am happier and grateful to be part of the TEA group and thank everyone for their support.

I would welcome hearing from others at anytime (416-694-8313).

Patricia Michaux writes: I hope I can help others by sharing my story. I have had EM in my feet for ten years, when I walk after about 1 km (approximately 2/3 of a mile). My husband and I recently stayed in Lisbon, Portugal. To see more of the city, we walked a lot and my feet really suffered. When I returned to Paris, I went back to the doctor who diagnosed my illness earlier.
He performed a Doppler test and the result was that the Doppler remained silent when on my feet. When he put it on my hands, it made a normal buzzing sound.  It looked as if there was no blood circulation in my feet and that they were dead.
He prescribed a daily dose of Tildiem (dilitiazem*) 60 mg, saying it could take a few months to work. After three weeks, I noticed a real improvement. I can walk for a long time without pain. I also noticed that my feet, which had become increasingly rigid, began to be more flexible and my ankles less painful during rotation. I’ve been taking this for over two months and now walk as much as I want. Tildiem has changed my life.

 

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