As Erica Rimlinger tells it
The hives first appeared when I was in my early 20s after going to the laundromat. As I put on my freshly cleaned clothes, a rash formed, perfectly outlining the shape of my bra and underwear. Shocked and incredibly itchy, I called my mother, who suspected I had used too much detergent in my laundry or was having an allergic reaction. She recommended an antihistamine that didn’t even relieve the never-ending itch.
Unable to sit down or tolerate clothing touching my angry, red welts, I called the Ask-a-Nurse hotline my health insurance needed. After an hour on hold, I was given permission to go to the emergency room. There, a doctor gave me a steroid injection and wrote me a prescription for several days of steroid pills. He told me to continue taking an antihistamine and discouraged me from using that brand of detergent again. The angry, red hives quickly cooled to pink, calmer ones and then disappeared, almost a week later. I thought this episode was a learning experience and it was over.
But it wasn’t over yet: the hives returned. Each time, my doctors and I assumed that an unknown allergen had irritated me. I was given a course of steroids, continued taking antihistamines, and the hives magically disappeared over the next week. I didn’t care about the long-term side effects of taking steroids: I just needed them to work when I needed them.
I kept detailed notes about what I ate and used on or near my skin. I went to an allergist who couldn’t find the cause of the outbreaks. In my 20s and 30s, the outbreaks were relatively short, but I had to miss life for a week while I dealt with them. The itching was too intense for me to concentrate on anything for long, and no cream, pill, or treatment provided adequate relief. In my 40s, the hives lasted longer and did not respond quickly to steroids or multiple antihistamines. When the breakouts continued for well over a week and felt uncontrollable, I was desperate for relief.
If you imagine beehives as a collection of small, red, itchy bumps like mosquito bites, you’re not quite getting the full sensory experience. My hives broke out in painful swellings that I couldn’t touch without upsetting my body and making the itching even worse. It was as if someone had shaved all my skin with a razor and covered me with wool. During my flare-ups, a light fingernail scratch on my skin turned the line into hives. I could write my name on my skin in hives, a phenomenon called dermatographism.
In 2019, I had a month-long hive outbreak, meaning my hives met the definition of “chronic.” As with shorter outbreaks, it was nearly impossible for me to work, sit, move, or perform simple activities like bathing. I had hives every day and didn’t know which days they might be worse or where the swelling and itching would go next. The painful itch was oppressive – and nothing relieved it.
During the outbreaks, I continued to document all the details of my life, looking for reasons why the outbreak appeared, disappeared, worsened, or alleviated. I couldn’t find a pattern, allergen or any clue as to why this was happening. During my last attack, I couldn’t find any form of relief that worked anymore.
There are many myths about chronic hives, and one is that simply reducing stress can prevent breakouts. As a woman suffering from a chronic illness, medical staff repeatedly told me that if I was just calmer, I wouldn’t get sick. But my regular notes about the circumstances of my outbursts showed me that they weren’t caused by my feelings. It seemed dismissive to people to suggest that I could control my body’s extreme physical response by simply not being stressed—as if that were even possible.
CSU on Kristen’s legs
The first week of the 2019 outbreak was the worst torture I had ever experienced, then the outbreak completely lost its predictability. Because of the severe itching, I couldn’t sit still. It prevented me from sleeping, working, being with friends and family, and carrying out basic activities. After a few days the situation improved, but the hives were still there every day: first for weeks, then for months.
A while ago I was diagnosed with an autoimmune disease called Graves’ disease. I wondered if my hives could be related. After some research and consultation with my immunologist, I learned about chronic urticaria (CU) or chronic hives. In most people with this condition, the cause is never identified, which is called chronic spontaneous urticaria (CSU) – but the outbreaks are closely linked to autoimmune diseases.
I took steroids and quadruple doses of antihistamines and they provided no long-term relief. I finally found an allergist/immunologist who knew that CSU is almost never an allergic reaction – despite common misconceptions. She knew what to do next and that gave me great hope.
I continued taking antihistamines and began a treatment that required an injection in the back of each arm every month. By the third month I had not noticed any improvement. I called a friend who is a pharmacist and asked, “Is this going to be like this forever? Why can’t I get rid of these?”
The friend contacted a trusted local colleague who told me to stick with it, so I did. Almost like clockwork, by the sixth month the hives were completely gone. I could cry just thinking about it today. What an incredible relief.
I haven’t had a breakout since. Although I’ve occasionally had a single hive, I haven’t had any outbreaks since.
I had no intention of advocating for people with chronic hives, but was working for a global patient organization that included UC in its scope of work. When I mentioned to my CEO that I was a UC patient in remission, it blossomed into an even better partnership. Together with two other dedicated colleagues, we founded an organization called We CU to support people in the US suffering from chronic hives.
The name says it all. If you experience CU, we see you. It’s a gift to meet other people in similar situations and provide real hope for relief. I know the frustration of being desperate and running out of help. I am incredibly grateful that my itching, pain, and swelling have stopped, and I am also very grateful to have found the real, lasting support of a community where people with UC can share our challenges, successes, and most importantly, our hope.
resources
We CU
This educational resource was created with support from Regeneron and Sanofi.
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Our “Real Women, Real Stories” are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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