Espa\u00f1ol<\/a><\/p>\n As told to <\/em><\/em>Erica Rimlinger<\/em><\/em><\/a><\/p>\n The hives first appeared when I was in my early 20s, following a trip to the laundromat. Putting on my newly clean clothes, a rash perfectly outlining the shape of my bra and underwear formed. Shocked and incredibly itchy, I called my mom, who guessed I used too much detergent in my laundry or was having an allergic reaction. She recommended an antihistamine, which didn\u2019t even take the edge off the never-ending itch.<\/p>\n Unable to sit down or tolerate clothing touching my angry, red welts, I called the Ask-a-Nurse hotline my health insurance required. After an hour on hold, I was cleared to go to their urgent care. There, a doctor gave me a steroid shot and wrote me a prescription for several days of steroid pills. He told me to stay on an antihistamine and advised against using that detergent brand again. The angry, red hives quickly cooled to pink, calmer ones, then, nearly a week later, disappeared. I thought this episode was a learning experience and that it was over.<\/p>\n But it wasn\u2019t over: The hives returned. Each time, my healthcare providers and I assumed some unknown allergen had irritated me. I\u2019d get a course of steroids, keep taking antihistamines and the hives would disappear like magic over the next week. I didn\u2019t care about any long-term side effects of taking steroids: I just needed them to work when I needed them.<\/p>\n I kept detailed notes on what I ate<\/a> and used on or near my skin. I saw an allergist<\/a>, who couldn\u2019t find a culprit that was causing the outbreaks. In my 20s and 30s, the outbreaks were relatively short, but I\u2019d have to miss life for a week while I dealt with them. The itch was too intense to allow me to focus on anything for very long, and no cream, pill or treatment provided enough relief. In my 40s, the hives were staying longer and not responding quickly to the steroids or multiple antihistamines. By then, when the outbreaks lasted well over a week and felt unmanageable, I was desperate for relief.<\/p>\n If you\u2019re imagining hives as a collection of small, red, itchy bumps like mosquito bites, you\u2019re not quite getting the full sensory experience. My hives erupted in painful swells that couldn\u2019t be touched without angering my body and making the itch even worse. It was as if someone shaved off all my skin with a razor and covered me with wool. During my flares, a light scratch of the fingernail along my skin would turn the line into hives. I could write my name in hives on my skin, a phenomenon called dermatographism<\/a>.<\/p>\n In 2019 I had a hive outbreak that lasted months, meaning my hives met the definition of \u201cchronic<\/a>.\u201d As I had with shorter outbreaks, I found it nearly impossible to work, sit, function or do simple activities like bathing. I had hives every day and didn\u2019t know which days they might be more severe or where the swelling and itching would move to next. The painful itch was oppressive \u2014 and nothing relieved it.<\/p>\n During flares, I continued to document all the details of my life, looking for any reason for the outbreak\u2019s appearance, disappearance, worsening or relief. I couldn\u2019t find a pattern, an allergen or any clue why this was happening. During my last flare, I also couldn\u2019t find any form of relief that worked anymore.<\/p>\n There are many myths about chronic hives, and one is that simply reducing stress eliminates outbreaks. As a woman experiencing a chronic illness, I found medical staff commonly telling me if I would just be calmer, I wouldn\u2019t be sick. But, my regular notetaking about the circumstances surrounding my outbreaks showed me they were not caused by my emotions. It felt dismissive for people to imply I could control the extreme physical reaction my body was having by simply not being stressed \u2014 as if that were even possible.<\/p>\n The first week of the 2019 outbreak was the worst agony I\u2019d ever experienced, then the outbreak lost predictability entirely. I could not sit still given how severe the itching was. It prevented me from sleeping, working, being with friends and family, and doing basic activities. After a few days, things improved, but the hives were still present every day: first for weeks, and then months.<\/p>\n A while back, I\u2019d been diagnosed with an autoimmune disorder called Graves\u2019 disease. I wondered if my hives could be related. After some research and consulting with my immunologist, I learned about chronic urticaria (CU), or chronic hives. In most people with the condition, its cause is never identified, which is called chronic spontaneous urticaria (CSU) \u2014 but the outbreaks are strongly linked to autoimmune issues.<\/p>\n I was taking steroids and quadruple doses of antihistamines, and they provided no long-term relief. I finally found an allergist\/immunologist<\/a> who knew that CSU is almost never an allergic reaction \u2014 despite common misconceptions. She knew what to do next and that gave me great hope.<\/p>\n I continued taking antihistamines and started a treatment that required a shot in the back of each arm each month. By month three, I hadn\u2019t seen improvement. I called a friend who is a pharmacist and asked, \u201cIs this going to be forever? Why can\u2019t I get rid of these?\u201d<\/p>\n The friend contacted a trusted colleague in the field who told me to stick with it, so I did. Almost like clockwork, by month six, the hives were completely gone. I could cry just thinking about it today. What an incredible relief.<\/p>\n Since that time, I have not had an outbreak. While I\u2019ve had an occasional, isolated hive, I\u2019ve had no flare-ups since.<\/p>\n I didn\u2019t intend to become 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 mentioned to my CEO that I was a CU patient in remission, it turned into an even better partnership. Together with two other dedicated colleagues, we started an organization called We CU<\/a>, to support people in the U.S. who have chronic hives.<\/p>\n The name says it all. If you\u2019re experiencing CU, we do<\/em><\/em> see you. It\u2019s a gift to meet other people in similar situations and to offer real hope for relief. I know the frustration of feeling desperate and beyond help. I\u2019m incredibly grateful my itching, pain and swelling have stopped, and I\u2019m also very grateful to have found the true, lasting support of a community where people with CU can share our challenges, successes and, most of all, hope.<\/p>\n Resources<\/strong><\/p>\n We CU<\/a><\/p>\n This educational resource was created with support from<\/em><\/em> Regeneron and Sanofi.<\/em><\/em><\/p>\n Have your own Real Women, Real Stories you want to share?<\/em><\/em> <\/em>Let us know<\/em><\/em><\/a>.<\/em><\/em><\/p>\n 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.<\/em><\/em><\/p>\n![\"selfie\"\/](\"https:\/\/www.healthywomen.org\/media-library\/selfie.png?id=66893575&width=980\")
<\/p>\n![\"CSU](\"https:\/\/www.healthywomen.org\/media-library\/csu-on-kristen-s-legs.png?id=66893581&width=980\")
CSU on Kristen\u2019s legs<\/small><\/p>\n