As I said to Erica Limlinger
I first got hives when I was in my early 20s when I went to the dry cleaners. After wearing new, clean clothes, I developed a rash that perfectly showed the shape of my bra and underwear. Shocked and extremely itchy, I called my mom, who thought I had used too much detergent in the laundry or was having an allergic reaction. She recommended antihistamines, which did not even relieve the never-ending itching.
Unable to sit up or bear my clothes touching my angry red welts, I called the Ask-a-Nurse hotline for health insurance. After waiting for an hour, I was given permission to go to urgent care. There the doctor gave me a steroid injection and prescribed steroid pills for a few days. He told me to continue taking my antihistamines and advised me not to use that brand of detergent again. The angry red hives quickly cooled down to pink, calm hives that disappeared after almost a week. This episode was a learning experience and I thought it was over.
But it wasn’t over. The hives came back. Every time, my healthcare provider and I thought it was some unknown allergen that was irritating me. If you take steroids and continue taking antihistamines, your hives will magically disappear within the next week. I didn’t care about the long-term side effects of taking steroids. I needed the steroids to take effect when I needed them.
I kept detailed records of what I ate and what I used near my skin. I saw an allergist, and he couldn’t find what was causing the outbreak. In my 20s and 30s, the onset was relatively short, but I had to miss life for about a week while receiving treatment. The itching was so severe that I couldn’t concentrate on anything for long, and no cream, pill, or treatment provided sufficient relief. In my 40s, my hives lasted longer and did not respond as quickly to steroids or various antihistamines. By then, when the outbreak had lasted over a week and felt unmanageable, I was desperate for relief.
If you imagine hives as a collection of small, red, itchy bumps, like mosquito bites, you are not getting the full sensory experience. My hives were painful swellings that were impossible to touch, irritating my body and making the itching worse. It was as if someone had taken a razor to all my skin and covered it with wool. If you lightly scratch your fingernail along the skin during a rash, the lines will turn into hives. I had my name written in hives on my skin, a phenomenon called dermatophytosis.
In 2019, I had hives for several months, meaning my hives met the definition of “chronic.” As my attacks shortened, I found it nearly impossible to work, sit, function, and do simple activities like bathing. I suffered from hives every day and couldn’t tell which day would get worse or where the swelling and itchiness would move next. The painful itching was unbearable and nothing could relieve it.
During the outbreak, I continued to document every detail of my life, looking for reasons for the appearance, disappearance, worsening or remission of the outbreak. I can’t find any clues as to the pattern or allergen or why this is happening. During my last explosion I could no longer find any form of relief that worked.
There are many misconceptions about chronic hives, one of which is that simply reducing stress will make the outbreaks go away. As a woman suffering from a chronic disease, I often heard medical staff tell me that if I just calmed down, it wouldn’t hurt. But as I regularly recorded my outbreaks, I found that they were not caused by my emotions. When people implied that I could control the extreme physical reactions my body felt by simply not being stressed, it felt like it was possible.
The first week of the 2019 outbreak was the worst pain I’ve ever experienced, and after that the outbreak lost all predictability. The itching was so bad I couldn’t sit still. It left me unable to sleep, work, be with friends and family, and perform basic activities. After a few days things improved, but the hives still appeared every day. At first it was weeks, then months.
Not long ago, I was diagnosed with an autoimmune disease called Graves’ disease. I wondered if my hives could be related. After some research and consulting with an immunologist, I learned about chronic urticaria (CU) or chronic hives. For most people with this condition, called chronic spontaneous urticaria (CSU), no cause is ever identified. However, the outbreak is closely linked to autoimmune problems.
I was taking steroids and quadruple doses of antihistamines, but they didn’t work long term. I finally found an allergist/immunologist who knew that, despite common misconceptions, CSU is rarely allergic. She knew what to do next and it gave me great hope.
I continued taking antihistamines and began treatment that required monthly injections into the back of each arm. By the third month I had not seen any improvement. I called my friend who is a pharmacist and asked, “This is going to last my whole life. Why can’t I get rid of it?”
He told me to contact a trusted colleague in the field and continue, so I did. Almost like clockwork, by six months the hives were completely gone. I feel like crying today just thinking about it. I felt such incredible relief.
Since then I haven’t had an outbreak. There have been occasional isolated hives, but no recurrences have occurred since.
I had no intention of becoming an advocate for people with chronic hives, but I was working for a global patient advocacy organization that included CU in its scope of work. When I told the CEO that I was a CU patient in remission, it developed into a much better partnership. Along with two other dedicated colleagues, we started an organization called We CU to support people living with chronic hives in the United States.
The name says it all. If you are experiencing CU, we do See you again. Meeting other people in similar situations and giving them real hope for relief is a gift. I know the frustration of being desperate and not being able to get help. I am so grateful that the itching, pain, and swelling have stopped, and I am so grateful to have found genuine, ongoing support from a community where people with CU can share our challenges, successes, and most of all, our hopes.
resources
our CU
This training material was created with support from: Regeneron and Sanofi.
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Our Real Women, Real Stories captures the real experiences of real women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect HealthyWomen’s official policy or position.
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