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.
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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