Chronic Spontaneous Urticaria: One Women’s Diagnosis Journey

It turns out that Hawkins’ itching was not triggered by anything from her shower. She was actually dealing with her first bout of chronic hives—also known as chronic spontaneous urticaria (CSU). This is a “recurring skin condition that appears as red itchy welts,” Payel Gupta, MD, a board-certified allergist with Mount Sinai Medical Center in New York City and co-host of The Itch podcast, tells Well+Good.

Unlike other allergic reactions, the cause of CSU is largely unknown. “[CSU] is not triggered by something particular that you are exposed to,” says Dr. Gupta. Instead, like the name suggests, it is a spontaneous reaction that does not stem from a specific allergen, like mold or dust. It looks almost exactly like regular hives but does not increase a person’s risk for anaphylaxis (i.e., a severe allergic reaction that causes difficulty breathing and swelling of the throat) like other hives can, Dr. Gupta notes.

If anything, CSU is more commonly associated with angioedema, or swelling of the skin, and often lasts more than six weeks, says Dr. Gupta. “As we learn more about this condition, we think there may be an autoimmune component,” instead, she adds. This can make CSU pretty difficult to diagnose and, on top of that, seem decently rare. (FYI, that’s because autoimmune disorders usually don’t have a clear cause.)

According to Dr. Gupta, only about 1.7 million people are affected by CSU, with women nearly twice as likely to have the condition as men. While about half of people with the condition see symptoms resolve within five years, recent medical studies have found they can last much longer.

For Hawkins, getting a CSU diagnosis was tough because healthcare providers dismissed her condition for years. Read on to learn how it affects her life, why diagnosis is difficult, and the latest treatment options out there.

It took 2 years to get diagnosed

After Hawkins’ initial bout of hives (which lasted all night long and into the next day), she tried to book a telehealth appointment with her healthcare provider. She was told she needed to be seen in person for her symptoms, but this was during the height of the pandemic, so the office was closed. “They told me to wait, keep a watch on it, and seek medical attention if I had wheezing or shortness of breath,” Hawkins says.

In the meantime, Hawkins did all she could to heal at home. She threw out her toiletries and replaced them with sensitive skin products, started taking an over-the-counter (OTC) antihistamine every day, and even took photos and videos of her reactions to eventually show a healthcare provider. In a last-ditch effort for answers, she turned to online forums and blogs, where she discovered people with similar puzzling hives that had no pattern as to when or where they appeared. This is how she first learned about CSU.

Still, Hawkins wasn’t sure her condition was the same thing. When she typed “welts” or “hives” into her search bar, the images that came up showed bright red patches on light-colored skin. “My hives didn’t look like that—they were raised and slightly reddish,” Hawkins says. “I couldn’t find any examples of people with my skin tone going through this.”

After a year and a half of waiting, Hawkins finally got to see her healthcare provider—and her provider agreed with the CSU diagnosis. But instead of treating the condition, she told Hawkins to wait another couple of years to see if it resolved on its own.

“I felt so dismissed and disappointed,” Hawkins says. But she figured her healthcare provider knew best, so she dealt with her unbearable itching for two more years. Eventually, she went to see a provider a second time in 2023, was told to “just deal with it,” and wasn’t offered any treatment options. She was devastated at being brushed off and discouraged by the lack of solutions.

Recently, Hawkins decided to switch primary care providers and met with an allergist, who told her to start taking OTC antihistamines at the first sign of an outbreak. While this helps, living with the condition is still tough.

What it’s like to live with chronic hives

“CSU affects me more than you would think,” Hawkins says. “My anxiety is high every day. Because the hives are sporadic, I never know when they are going to appear, and the worry is always in the back of my head.”

This is a common experience for people with CSU. The uncertainty surrounding when and where you’ll break out can interfere with daily functioning and lead to depression or anxiety, says Dr. Gupta. Itching can also make it “difficult to sleep, which causes irritability and poor concentration,” she adds. Unsurprisingly, this can lead to work challenges and relationship issues. (Just imagine a relentless itch during a date, meeting, or in the middle of the night.)

Physically, it’s pretty clear when Hawkins is having a flare. “The first feeling I get during an outbreak is an itching, burning sensation that usually starts on my scalp or palms,” she says. “Eventually, it turns into an ongoing, moving itch that I can’t scratch.” The itch is so intense that she’s unable to rest or focus on anything else.

“I have to make sure I always have antihistamines with me, and if I forget them, I go into a panic, waiting for the itch to start,” Hawkins says. “Even then, there is no guarantee the antihistamines will work—sometimes they don’t control the hives, and I go through the day being uncomfortable.”

Why it’s hard to get diagnosed with chronic hives

Diagnosing CSU can be difficult for a few main reasons, including the following:

1. Uninformed healthcare providers

CSU is often misdiagnosed because hives are typically associated with some kind of allergy attack. “Often, people with CSU will end up in urgent care, the emergency room, or at their primary care physician,” says Dr. Gupta.

However, because many healthcare providers are not familiar with CSU, they’ll assume the person is having an allergic reaction and give them epinephrine—a common medication to treat allergies and asthma. While this is life-saving for folks having a true allergic reaction, it’s ineffective at treating CSU.

2. False positive allergy tests

Additionally, people with recurring hives are often given allergy tests. But because CSU has no known cause, allergy testing is unhelpful, and the “high rate of false positives [from allergy tests] can point people down the wrong path,” says Dr. Gupta. (For context, about 50 to 60 percent of allergy tests result in false positives.)

This happened to Hawkins, who eliminated dairy from her diet for one year, thinking her hives were connected. While it’s certainly possible to have both a food allergy and CSU, the two are not related, Dr. Gupta explains.

3. Varying skin tones

Another factor that makes diagnosis challenging? Hives will look different depending on the color of your skin, as Hawkins experienced.“In darker skin, hives may look purple instead of red, and they can be harder to photograph,” Dr. Gupta says. “This can lead to a delay in diagnosis,” she adds, also pointing out that CSU is commonly mistaken for scabies—an itchy skin rash caused by mites that burrow under the skin.

Find a healthcare provider who’s familiar with CSU

Because there’s a lack of awareness about CSU in the medical community, Dr. Gupta urges people to seek out an allergist or dermatologist who is familiar with the condition. “If your symptoms don’t make sense, cause you stress, and interrupt your daily life, see a specialist,” she says. “Before making an appointment, call the office and ask if the doctor has experience treating urticarial conditions.” (Urticarial is just a fancy way of explaining a condition that is related to hives.)

During the appointment, your healthcare provider will likely ask you to describe your symptoms, health history, appearance of the hives, and whether they respond to antihistamines. Because there’s no official diagnostic test, Dr. Gupta says to “take pictures to show your doctor.”

New treatment options are becoming available

Medical researchers are actively studying CSU, but its cause is still a mystery. One theory is that CSU is linked to our body’s mast cells—a type of white blood cell located in almost every organ and near our skin, says Dr. Gupta.

“When mast cells are triggered, they break open and, like confetti, release the chemical histamine, which causes hives,” she adds.

Normally, mast cells activate during an allergic reaction—whether in response to something in the environment (pollen, pet dander, etc.), a medication, or a certain type of food. “But people with CSU have very sensitive mast cells that release histamine without any rhyme or reason,” Dr. Gupta says.

This is just one theory. Without a specific cause, CSU can be tough to treat, and unfortunately, there isn’t a one-size-fits-all solution. “The appropriate treatment plan will look different for each person,” Dr. Gupta says. Here’s a closer look at some of those options.

Oral antihistamines

A high dose of oral antihistamines, such as Claritin (loratadine), Allegra (fexofenadine), or Zyrtec (cetirizine), is the first line of treatment for chronic hives. While dose and frequency will depend on each person, healthcare providers often recommend taking up to four times the “normal” daily amount for relief, per Dr. Gupta. However, if you have CSU, it’s essential to ask your healthcare provider what dosage is safe for you before you start treatment.

“Many people with CSU who come to see me are not taking antihistamines appropriately for their condition,” Dr. Gupta says. “In fact, 50 percent of them don’t achieve complete control of their symptoms and simply live with it, thinking this is the best it can get.” In such cases, your healthcare provider might recommend an injectable antihistamine.

Injectables

If you haven’t found relief after three to four weeks on oral antihistamines, your healthcare provider might suggest an alternative treatment like Xolair—an injectable shot that blocks the antibody that triggers an allergic reaction. While it’s typically prescribed for asthma and food allergies, it has been shown to help CSU symptoms, too.

“There are other oral and injectable options available as well,” Dr. Gupta says. “Thankfully, new and emerging therapies are in the pipeline.”

Stress and nervous system management

While we don’t know what triggers the initial onset of CSU, one recent study in the Journal of Clinical Medicine found that psychological stress exacerbates CSU symptoms. CSU, in turn, increases anxiety, resulting in a vicious cycle. This is why it’s important to find a stress management strategy that works for you, like exercise, yoga, or meditation.

Hawkins has also found calming her nervous system is essential. Breathwork and adult coloring books help her stay grounded. She also prioritizes getting a good night’s sleep to reduce stress. If you are having any difficulties with managing your stress or regulating your nervous system, seeing a mental health professional (like a psychologist or therapist) can help you get individualized tips and strategies for stress management.

Self-care and lifestyle changes

Apart from meds and stress relief, there are other habits you can incorporate to relieve CSU. For instance, temperature control is key for soothing itch. “Chronic hives might be aggravated by heat,” Dr. Gupta says. “Taking a cool bath or shower can help soothe your skin.”

Keep your bedroom temperature cool while sleeping, and use fans when you can. Try to wear loose-fitting, breathable clothing, too. “Material that’s tight, itchy, or abrasive might irritate your skin,” Dr. Gupta adds. She also suggests keeping a fragrance-free, sensitive lotion on hand (and storing it in the fridge for optimum cooling relief.)

Personally, Hawkins takes cool showers, uses portable fans, and limits outdoor time in the summer to keep flares down. She also uses organic makeup and personal care products to avoid further irritating her skin.

CSU is chronic but manageable

Between these lifestyle changes and a solid antihistamine regimen, Hawkins has gotten a handle on her condition. “Even though I might have CSU for my entire life, I’m not going to hide in the house just in case I have an outbreak,” she says.

“It’s not going to stop me from doing things I enjoy, like going on vacation and out to concerts. I feel confident and live to the fullest.”