Erythromelalgia Changed Me, but My Faith Keeps Me Strong
By Danni Wortmann
Four years ago, my life changed forever. I had been a reasonably healthy woman, happily married for 34 years with two awesome grown-up kids, working part-time and helping my husband on our farm raising cattle, hogs and alfalfa. I was sociable, active and I loved life. How I fell ill just seems so random when I think about it. I was standing by the filing cabinet talking to a coworker when suddenly my feet and hands felt like they had been set on fire. Never had I experienced such agony, not even in childbirth! From that day forward I have not known a pain-free day.
At first, not a single doctor I consulted knew what was wrong with me. One doctor misdiagnosed me as having polyneuropathy and pumped me full of high-dose gabapentin. When the burning got worse he even told me that my escalating pain was impossible. I was terrified that no one believed me and frustrated that no one was helping me.
The searing pain spread pretty quickly and within a few months my scalp, face, ears, back, arms and legs were all on fire as well. My skin would become hot and turn bright red and I would often swell. I would burn for hours; it felt as though someone was pouring acid all over my body or torching me. I was being burnt alive. It was intolerable!
After countless ineffective drugs and doctors, I finally managed to see a neurologist and pain specialist at the Johns Hopkins Institute. They quickly diagnosed me with an acute onset of widespread progressive secondary erythromelalgia (EM) and recommended a sodium blocker therapy of IV lidocaine infusions every few months. Despite this recommendation I could not find one doctor in the USA-midwest who was prepared to prescribe or administer IV lidocaine. To this very day I am still without that treatment! Instead, I take pregabalin, amytriptiline and use fentanyl patches. They give me some relief but I still suffer daily flare-ups, which, at the moment, are mostly localized to my hands and feet (thank goodness!).
Once I knew I had the rare neurovascular chronic pain condition called erythromelalgia, I tried to find out as much as I could about it. I believe that the fentanyl and minimizing my triggers have a lot to do with my lessened pain levels. I discovered my worst triggers are warmth and exertion so I do my best to avoid them. I also cool my affected areas with ice packs, Chillow pillows and fans. I also rest and elevate my limbs.
Erythromelalgia has seriously limited what I am able to do. My husband and I used to love traveling and I used to enjoy walking several miles a day; however, no more long walks for me – even managing a few paces is an achievement. I hate that medications have increased my appetite and feel utterly miserable about gaining so much unwanted weight and the fact that my clothes don’t fit. Even wearing shoes has become impossible and I’m always on the lookout for very soft open sandals. I have always enjoyed swimming for exercise and luckily I am still able to do this a few times each week. But it has to be in a cold water indoor pool as I flare in a heated pool or outdoor pools in the summer months.
I am so thankful the EM Warriors have helped me get through this hell. I was at my wits’ end when I found them and in all honesty I could not cope without them. If I have a question I go straight to EM Warriors before I ask a doctor – I know they are the real experts. They all have EM themselves so they totally understand our pain and concerns. They have their finger on the pulse too when it comes to research and drugs in the pipeline. Getting involved with their awareness projects has helped me feel like I am making a difference. I wear my EM warriors fire lady t-shirt with enormous pride.
To anyone who thinks they might have EM, my best advice would be to take photos of your flaring skin and to keep a pain journal. It helped that I could hand the John Hopkins’ doctor this sort of information and I really don’t think I would have been diagnosed without it. To anyone who has been diagnosed with EM, I would stress the importance of getting to know your personal triggers, especially dietary triggers like coffee, alcohol, spices and additives. Also, try to minimize rather than manage your flare-ups; start cooling well before you flare and before flare-ups hit. The worst time for me is after 6:00 p.m. at night.
Erythromelalgia can take so much from you, especially your relationships with family and friends; it has even changed things with my loving and considerate husband. I have lost the career I adored working as a dietitian so finances are greatly affected too.
There are so many things in life I would love to do which are impossible now and that makes me sad. I was always an active, busy person but now it is terribly difficult to plan anything ahead since I never know how I will feel. I struggle with accepting that my life has changed forever and that living with erythromelalgia has changed who I am.
God is the one thing that has remained constant in my life and my faith is a source of great comfort to me – it also keeps me strong. How do I live with erythromelalgia? Well, I manage to cope by taking things one day at a time and, if that’s impossible, I take things one minute at a time instead.
I really hope my story helps to raise some awareness of erythromelalgia. People need to know about this devastating condition.
Who are The EM Warriors?
The EM Warriors: Erythromelalgia Patient Support and Information Network are a self-funding charitable association dedicated to EM-powering, educating and encouraging all those living with or affected by erythromelalgia and its comorbidities.
Do you or a loved one think you may have erythromelalgia? Would you like more information about the syndrome or have EM-related support needs? Visit the EM Warriors website or email their support team at [email protected]
Please consider donating to our Stop The Burn fund and help us sponsor independent research into erythromelalgia.
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