Learning to Expect the Unexpected With CSU

Medically Reviewed by Neha Pathak, MD on October 08, 2021
4 min read

By Oliver Douglas, as told to Kara Mayer Robinson

Daily life with chronic spontaneous urticaria (CSU) is something I’ve gotten used to over the years. I don’t really consider it a life-threatening or life-changing illness, just a chronic condition that I manage with a few strategies. I avoid triggers, make healthy lifestyle choices, and treat it when it flares up.

I’ve had CSU for about 10 years. When it flares up, I get hives and red spots on my arms and legs. If I’m having a particularly bad episode, I may also get it on my hands, feet, ears, back, and chest.

My hives are usually pretty small. But if I’m scratching nonstop, they can turn into open wounds. It gets worse during periods of extreme heat.

I’ve tried many things to manage it. I’ve taken antihistamines, which have really worked wonders at keeping symptoms at bay. During bad flare-ups, I’ve used steroids. But you can’t stay on steroids for an extended period of time. And while medications can take the edge off, none of them address the root cause of the problem.

The best thing I’ve done to manage my CSU is make lifestyle changes. It took time to realize that’s what I needed most.

For the first few years, I mostly just ignored my CSU. I thought I was healthier than most people, so it was OK if I was eating poorly. As my CSU gradually got worse, I realized that I needed to look after myself better.

At first, I thought all I had to do was exercise more, so I started exercising intensely four or five times a week. But it wasn’t enough to overturn an imperfect diet.

Making my diet better is the one thing that has helped me most. In the past year or so, I’ve completely removed all processed foods, sugars, and other bad foods from my diet. Now, I try to eat only healthy foods like lean meats, nuts, fruits, vegetables, and non-gluten grains. I also try to drink only water.

I also see a traditional Chinese medicine specialist who mixes up different teas with various roots and tree bark. Each time I go, he changes the ingredients slightly, depending on what he thinks I need. This helped me a lot.

My CSU hasn’t gone away completely, but I made more progress since I made these lifestyle changes than I did in all the years before.

I’ve also gotten better at managing triggers, which helps a lot. I try to stay away from things that really seem to set off a flare.

I’ve heard that alcohol, aspirin, and tight clothing are some common triggers of CSU. I don't drink or take any pills, so I have no experience with those things. And I've worn tight clothing many times when I work out and never had a problem with it personally.

My triggers became obvious to me over time. Some people keep a journal to find out what their triggers are, but I’ve had it so long that I figured it out pretty easily.

Gluten and heat are my main triggers. I have gluten sensitivity, so I’ve cut it entirely from my diet. And some of my worst flare-ups happened during extreme periods of heat, so I try to stay out of the heat whenever I can.

The worst I ever felt was when I went on vacation in Italy. When I went outside in the midday sun, it felt like somebody had set my body on fire. I had to go inside, take a cold shower, put on an aloe vera cream, and wait until nightfall. It was tough, and it pretty much ruined my trip. But that's life, I suppose!

Other triggers I’ve noticed are wind and extreme cold, so now I try to avoid those things as well.

Keeping things in perspective helps me manage the ups and downs of CSU.

I feel lucky because it’s never gotten too serious. I don’t have to worry about a severe or extreme allergic reaction. I don’t get caught up thinking about all the things that could possibly happen.

Just having a normal day with minimal flare-ups is the best. I always appreciate days like these. It’s all about putting it in perspective and getting used to the condition.

For me, getting used to it happened naturally. At the beginning, I didn’t have a good outlook. I was always checking my skin for spots. I’d look at my skin every few hours or even every few minutes. But over time, I’ve learned that as long as I know my triggers and have safeguards in place, my skin will be OK.