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Chronic Hives: Getting My Life Back

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My first episode of hives occurred during my senior year of college. One night, on the way home from dinner at the dining hall, my feet started to hurt, my lip began to swell, and I noticed a red, itchy rash–hives–spread all over my legs.

I didn’t know what was going on, so I called a friend’s dad, who was a pediatrician. He told me to take two Benadryl and not worry too much.

However, for many days after that, hives would break out all over my legs. I went to the emergency room the first few times, thinking it could be the start of an extreme allergic reaction, based on what I’d seen in my work as a student EMT. The doctor in the ER said I was probably allergic to a virus I’d caught. I told him I hadn’t had a cold recently, but I accepted his diagnosis. At this point, I’d never heard of chronic hives, and neither, it seemed, had anyone else.

I didn’t know what was happening. Final exams were coming up, but I kept missing class because I was in so much pain and so itchy. I didn’t know how to explain to my professors that I wasn’t just lazy or careless. I tried to cut out anything from my life that could be causing this allergic reaction. I changed my soaps and detergents, and even got so desperate that I became afraid to eat anything. I stuck to eating chicken breast and green beans once a day, because I was so panicked that the wrong choice would make the hives worse. I ended up losing 30 pounds, and the hives disappeared after about a month. I decided to put the whole episode behind me and chalk it up to some strange allergy.

Chronic Hives: The Comeback

Ten years later, I was driving with the windows down and I began to have a terrible allergy attack. By the time I arrived at the store, I was sneezing, coughing, and causing such a commotion that the woman waiting behind me left to get in a different line. I got home and noticed hives had started to cover my legs again. I hopped in the shower, hoping it was just a result of seasonal allergies. But the next day, the hives were there–and every day for nearly two years. On top of that, my feet, hands, and lips swelled up. I couldn’t believe it had happened again.

I had finished graduate school and had been planning to start applying for jobs. Instead, I moved back home to live with my parents. I couldn’t walk or use my hands without pain. Everything hurt. Some days, I’d wake up with a swollen eye that could barely open. I was getting desperate.

I saw an allergist, who didn’t really know what was going on. He suggested I continue taking over-the-counter antihistamines, and some days, the hives and swelling would go down. But they’d always return. I found information online about chronic hives, and I felt relief that I at least knew what was happening to me. But I still felt lost. I started to rule out any potential allergen that might be causing the hives and swelling. I cut out as much as I could, but nothing really changed. I didn’t know anyone who had chronic hives and I didn’t have anyone I could talk about it with.

I took higher doses of over-the-counter antihistamines, which made me feel like a zombie. But I’d do anything to get a break from the pain and the itch. Itching doesn’t sound like a big deal, and I’d always think, well, I don’t have cancer or something more serious. But the daily mental and physical toll breaks down your resilience. I was truly miserable. I couldn’t travel or see friends and family–I even missed several holidays because the hives were debilitating.

Time for Something New

I went through a string of doctors who didn’t really understand chronic hives and weren’t sure how to treat me. I kept taking lots of antihistamines and hoping for the best. At one point, about a year into the hives outbreak, I felt a terrible pain in my abdomen. A doctor told me I had swelling in my intestines related to the hives. I was scared and frustrated, and eventually decided to travel an hour and a half away to Vanderbilt University Medical Center, where I hoped I could find an allergist who understood. And I finally did.

My new allergist helped me adjust my medication so I didn’t feel like such a zombie. I continued to travel to see her periodically. The medications suppressed the hives to a point, although I still wasn’t close to recovered. She suggested we try more medication, but I was tired of popping pills with no lasting results. That’s when I found a documentary about a man with chronic hives who’d seen success after trying a juice fast. He was the only other person with chronic hives I’d ever heard of. I did some more research about the fast and decided I had nothing to lose. If it didn’t work, I’d try the new medication and see what happened. So I did a juice fast for two months. It was one of the most miserable things I’d ever done, but desperation is a strong motivator. Anyone considering it, however, should ask their doctor beforehand.

But it worked.

I stayed on the medications throughout the fast. By the end of the fast, the hives and swelling were gone. Under my allergist’s guidance, I was able to wean off the antihistamines completely. After one week without medications, my hives hadn’t returned. After two weeks, I became cautiously optimistic. Now, it’s been six months since I had hives or swelling. I’ve got my fingers crossed and everything is still tentative, but I finally feel comfortable taking next steps in my life. I was able to lose the weight I’d packed on when I was at my sickest. My friends have all moved on with their lives and for so long, I didn’t know what was going to happen with mine. But every day, I feel more confident that I’ll be hive-free for a while. I still follow up with my allergist at Vanderbilt, and I feel fortunate to have finally found someone who could help me. I know the hives may come back one day, but at least now I feel like I’ve got tools in my toolbox and I’m moving forward.

Kathryn McMahon is 34 years old and lives in Middle Tennessee.

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