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The reality of living with chronic hives -- which by definition last for 6 weeks or longer and have no apparent specific trigger -- can be very challenging.

About half of people with "chronic spontaneous urticaria," or CSU, the most common type of chronic hives, experience what doctors call "spontaneous remission" within 1-5 years. This means the itchy, raised bumps that appear suddenly on the skin, with or without deeper swelling or "angioedema," can also disappear for no apparent reason.

For others, symptoms last much longer, and in spite of effective treatment, about one-third live with chronic hives for years. This can have a huge impact on not only physical health but also emotional health. The itch can be overwhelming, especially at night, leading to sleep loss, poor performance at work or school, reduced productivity, and an increased risk of anxiety and depression -- even suicide.

Recently, a study of 19 women and 6 men treated for CSU provided an intimate look into the emotional impact of this skin disease. Many of the sufferers were not aware of the signs and symptoms of hives, and this played a role in delaying diagnosis and treatment. It also left patients and their families struggling to understand what was happening.

"As symptoms appeared on different parts of the body, such as the arms, legs, back, groin, buttocks, and scalp, patients experienced a 'crisis' that was associated with feelings of torment, disorientation, and shock," the researchers wrote. One person reported that the unrelenting symptoms felt like "wading in a pile of red ants, with fiberglass and poison ivy."

Turning to the internet for answers often made things worse, with patients encountering information about symptoms that pointed to gout, lupus, rheumatoid arthritis, and cancer. Self-medication was common, mostly with over-the-counter antihistamines, but some patients reported taking corticosteroids prescribed to others. Shame and distress left many unable to engage socially, while others hid affected areas with makeup, clothes, or by growing their hair.

Most patients sought medical advice soon after symptoms appeared, but others waited for up to 2 years. One patient reported suffering for 15 years before seeing a doctor. Similarly, some people said they received a prompt diagnosis from an allergist or dermatologist, while others reported bouncing from doctor to doctor before the diagnosis was confirmed. "I feel like an experiment," said one.

The search for "the right doctor" took years for some people, while others simply went to the nearest hospital emergency department whenever symptoms flared. When treatment failed to control symptoms or provided only temporary relief, patients reported frustration. Many complained that their physician didn't give them the emotional support they needed.

The unpredictable nature of CSU left many feeling helpless, even after the physical symptoms got better. "Our study highlights how important it is for patients to have their concerns taken seriously," said the researchers. Being actively included in treatment decisions may help to build patient confidence and potentially alleviate some of the psychological sense of powerlessness that many patients reported.

Better patient education and a more collaborative approach to clinical care, with patients and physicians working together to find solutions, could help facilitate faster diagnosis and treatment, and lead to better long-term management. "For patients with CSU, the journey to diagnosis and appropriate treatment can be a slow and challenging path to tread," the team wrote. "Maintaining open channels of communication and engaging in shared decision-making may benefit the patient-physician relationship and improve patient outcomes."

Take a list of your concerns, goals, and questions to your next doctor's appointment, and communicate them clearly. Then, discuss the pros and cons of treatment options with your physician, and decide which option is right for you.

Additional Resources:

Read previous installments in this series:

For Your Patients: All About Hives

For Your Patients: Understanding the Many Different Types of Hives

For Your Patients: How Will My Doctor Diagnose Hives?

For Your Patients: What's the Best Treatment for Hives?

For Your Patients: Is Stress Causing My Hives?

For Your Patients: Is It Safe to Treat Hives During Pregnancy?

For Your Patients: Help! My Child Has Hives

For Your Patients: What's Causing My Chronic Hives?

For Your Patients: How Well Is Your Hives Treatment Working?

"Medical Journeys" is a set of clinical resources reviewed by physicians, meant for the medical team as well as the patients they serve. Each episode of this journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.