‘How I Finally Took Control of My Chronic Spontaneous Urticaria Symptoms’
When I first got a diagnosis for my chronic hives, it was a tough pill to swallow.
Based on my symptoms of dermatographism—something like the weight of grocery bags on my arms could cause redness, itching and hives where the pressure was applied—and my slight deficiency of an immune-regulating protein called C1-esterase inhibitor, my primary care doctor thought I had hereditary angioedema, a genetic condition characterized by low C1-esterase inhibitor. It can cause swelling, even in the airways, which can inhibit breathing.
As a nurse, this scared me; I started experiencing panic attacks that my toddlers at the time (they’re now 10 and 11) would inherit this from me.
However, when we looked further into it and both of my parents tested negative for the hereditary angioedema gene, it was clear that the math wasn’t adding up. It turned out to be a misdiagnosis.
Even though I had brought clear photos of my skin displaying my most prominent hives for the doctor to see, they were still misinterpreted. My primary care doctor had sent me to an allergy specialist, who was able to give me the correct diagnosis of chronic spontaneous urticaria, or CSU.
Some of the confusion was that I had tons of chronic environmental allergies to most trees in my home state of Pennsylvania, and I was taking over-the-counter antihistamines for many seasons of the year to combat them. Sometimes, the antihistamines would mask the symptoms of CSU, but other times, the hives, redness and itching all over would be more prominent (particularly during periods when I was not taking antihistamines).
For the most part, staying on the over-the-counter antihistamine can keep my CSU symptoms under control—so much so that I notice when I stop taking the antihistamine, the itchy feeling and dermatographism start to return. I recognize how fortunate I am to be able to mainly manage CSU with an over-the-counter medication. Many people need to experiment with different options.
There is such a spectrum of CSU in terms of severity, triggers and multiple other factors.
In my nursing career, I’ve treated patients in the past who have had much more severe cases. For example, there was a young patient whose skin was so uncomfortable going out in the sun that they were borderline reclusive and, when they did go out, had to wear a cooling vest that looked like a post-op wrap to soothe their hives and inflammation.
About 50% of people with CSU don’t respond to antihistamine treatments and need something else, especially because CSU manifests as an autoimmune condition. Treatment options include certain biologics, corticosteroids and immunosuppressant drugs.
In my case, I notice that hot temperatures in the summer and being in the sun exacerbate my hives even more, especially because the blood vessels are dilated more with the warmer temperatures, and that can correlate with more inflammation. Or if my skin endures extra pressure or scratching, I often break out into hives in that particular area.
For me, the mental health aspect of having a skin condition is just as important.
When I first got the hereditary angioedema misdiagnosis, I experienced a sense of distrust in my body to do what it’s supposed to do, because I was otherwise young and healthy. That stress, in turn, can contribute to a vicious cycle of skin conditions worsening.
I started working on that and coping with the panic attacks in therapy, and I also turned to yoga. I’m a yoga instructor, and doing yoga in a mindful way helps me rebuild a sense of trust in my body, and the syncing of my breathing to the motion keeps my anxiety in a calmer place.
Advocating for myself to get the right diagnosis and treatment has been a major piece of that puzzle.
For better or worse, CSU is a visible condition, so it’s so important to document it with pictures. The documentation can be even stronger by keeping a symptom diary. You can even use your phone’s notes app to keep tabs of what day it was, what you were doing when you started noticing the reaction and what the other precipitating factors were. It may not be possible to avoid a misdiagnosis, but the more details you have, the better, including the temperature outside, or whether or not you exercised that day, to be as comprehensive as possible.
This can be especially challenging for women, who are disproportionately affected by autoimmune conditions. If you don’t have something visible to share, like photos and documentation, it might easily be dismissed as “stress” and not identified as a correct condition.
Our bodies all show up so differently, so being your own advocate can be the key to not only properly diagnosing but treating and managing an often mysterious condition like CSU.
All content independently developed by SHE Media with the support of Novartis Pharmaceuticals Corporation.
