5 Most Common Symptoms of Chronic Spontaneous Urticaria and How to Talk to Your Doctor About Them
Chronic spontaneous urticaria, also known as CSU or chronic hives, is a recurring skin condition characterized by itchy, raised, red welts or deep tissue swelling that persists for six weeks or longer, often without a discernible trigger. And although CSU can affect those of all ages, it seems to affecting an increasing number of women in menopause.
The exact statistics are unknown; however, Dr. Kara Wada, a board-certified allergist, immunologist and lifestyle and functional medicine physician, says that women’s health concerns are often under-investigated—and CSU is a prime example of this.
“We lack a hard statistic for CSU misdiagnosis specifically, but we know women are significantly more likely to experience a diagnostic delay for complex conditions,” Wada says. She also explains that for many autoimmune and immune-mediated conditions, such as CSU, the diagnostic odyssey typically takes an average of four years and involves consulting with five physicians to obtain a diagnosis.
Keep reading to learn more about the condition, its symptoms and how to talk to your doctors about what you’re experiencing.
The Top 5 Symptoms of CSU to Watch For
- Wheals: These are the standard itchy, raised, red welts—commonly referred to simply as “hives“—that appear without warning and move around the body.
- Angioedema: “Affecting approximately 50% of patients, this is a deep, often uncomfortable or painful swelling, typically of the lips, eyes, hands, feet or even genital tissues, that can last longer than the hives, at times for several days,” Wada explains.
- Physical Triggers: Wada says the skin becomes hyper-reactive when suffering from CSU. “This can manifest as dermatographism, where a simple scratch raises into a welt, or hives triggered by changes in temperature or pressure from clothing, especially around the bra, waistband and socks.”
- Systemic Inflammation & Fatigue: Itching often wakes patients from sleep, which is exhausting in its own right and also contributes to increased systemic inflammation. “We also know CSU is associated with an imbalanced gut microbiome (dysbiosis), which can act as another engine for that inflammation,” Wada adds.
- Quality of Life Impact: The constant itching, unpredictability and visible (at times, disfiguring) nature of CSU take a significant toll, frequently leading to anxiety, depression and social isolation.
Most commonly, they are mistaken for typical allergic reactions, as they present in a similar manner.
“Patients may go on a long goose chase trying to find the source of the allergy, and even mistakenly think they are allergic to certain foods or medicines, when they have no such allergy,” Dr. Austin Shuxiao, a board-certified internal medicine physician, tells Flow Space.
Eczema resembles CSU, as both can present with patches of itchy rash on the skin; however, eczema is usually not raised. Experts note that eczema tends to be more persistent in the same areas, whereas CSU tends to move and fade to different parts of the body.
“Contact dermatitis is one of the first things I look for when I see a new allergic welt or rash,” Shuxiao says. “I wouldn’t be surprised if patients were told to change their sheets, use a new detergent, stop wearing certain clothes, etc.”
Why Are So Many Women Misdiagnosed?
According to Dr. Hannah Kopelman, a dermatologist at DermOnDemand and hair loss expert, a significant number of women—particularly those in their 30s to 50s—get misdiagnosed or have their symptoms dismissed early on.
“Estimates vary, but I would say more than 50% of the women I’ve treated for chronic spontaneous urticaria (CSU) were initially misdiagnosed with something else, like stress, perimenopausal changes or allergic reactions,” she notes.
Kopelman says that this is partly because CSU doesn’t show up on standard allergy tests and the symptoms can mimic those of several other conditions.
Another factor that plays into misdiagnoses is the number of providers that women see before actually receiving the correct diagnosis for their symptoms.
“Most women I see have already seen at least two or three providers before getting a correct diagnosis,” Kopelman adds. “I’ve had patients tell me they’ve bounced between dermatologists, allergists and even rheumatologists. It’s frustrating for them, especially when symptoms are persistent and interfere with sleep, work or quality of life. Many times, it’s not until they see someone who’s familiar with CSU specifically that they finally get answers.”
How to Talk to Your Doctor About Your Symptoms
There are multiple steps in effectively speaking with your doctor about your symptoms. The first step is to track your symptoms accurately. “Note when hives occur, how long they last, what makes them worse or better, and any accompanying swelling or fatigue,” Kopelman shares.
Next, bring photos.
“Hives are notorious for disappearing right before a doctor’s appointment—maybe it’s the fight-or-flight response kicking in!” Wada notes. “A photo album on your phone is your best evidence and is incredibly helpful for me as an allergist.”
Then, detail all of your symptoms, don’t just point to the rash—talk about the itch, any swelling, your fatigue and the impact on your mental health.
Wada also says to mention any physical triggers. “Be specific. Say: ‘When I get out of a hot shower, I get hives,’ or ‘My bra strap leaves a welt that lasts for an hour.'”
But the most important step is actually visiting a healthcare provider. Know that there treatment options out there; CSU is not something anyone has to needlessly suffer through.
All content independently developed by SHE Media with the support of Novartis Pharmaceuticals Corporation.
