Imagine your immune system, which is meant to protect you, suddenly turning against you and attacking your body’s healthy tissues and organs. That’s what happens in lupus, an autoimmune disorder that affects multiple systems in the body, from the kidneys to the brain. So it’s not surprising that lupus often shows up on the skin in both visible and invisible ways.

About 75 percent of MyLupusTeam members report experiencing skin symptoms while living with lupus, including itching, discoloration, light sensitivity, hair loss, and scarring. Sometimes, people with lupus experience sensations on their skin, even when there is no rash or irritation.

One member shared, “I feel like something is biting me, but I look and nothing is there! I have burning skin that hurts to touch. Has anyone else experienced this?”

Find out a few common skin complaints from MyLupusTeam members, what may be causing them, and how they could be related to lupus.

1. Itching

Does lupus cause itching? Pruritus, commonly known as itchy skin, is one of the most common skin symptoms of systemic lupus erythematosus (SLE) — the most common form of lupus.

Cutaneous Lupus

One visible cause of itchy skin with lupus is cutaneous lupus erythematosus (CLE), one type of lupus that primarily affects the skin. Cutaneous lupus can occur with or without systemic lupus. It can be diagnosed with a skin biopsy and a blood test by a dermatologist, who can help differentiate lupus skin rashes from psoriasis, eczema, and other skin conditions.

Malar Rash

Cutaneous lupus can take the form of a malar rash — also called a butterfly rash — that spans from cheek to cheek across the bridge of the nose. The malar rash is a common lupus rash, affecting about 40 percent of people living with lupus.

Discoid Lupus

People with CLE can develop other types of rashes that can cause itchiness. Discoid lupus, for example, causes thick, raised, scaly patches that are often discolored. The patches may flake or form a crust on the skin’s surface.

Lupus-related lesions are often painful, irritating, and itchy. If you’ve been diagnosed with cutaneous lupus, be sure to follow your doctor’s instructions about which topical creams, ointments, and oral medications to use. Your doctor may also recommend reducing sun exposure or wearing sunscreen or protective clothing when exposed to ultraviolet light.

Hives

Hives can also be a source of itchy skin. Hives appear in about 10 percent of people with lupus. Hives are produced when immune cells release a chemical called histamine in response to something your body identifies as a threat. Hives that last more than one day and are not brought on by any other factors, such as allergies or infection, can be due to a condition called urticarial vasculitis.

The connection between hives and SLE is not completely understood, but one recent theory is that lupus can cause you to have an allergic reaction to your own cells, also known as an autoallergy. Dermatologists can help rule out other common causes of hives before identifying them as a symptom of lupus.

2. Burning

Does lupus make your skin feel like it’s burning? One MyLupusTeam member shared, “I’ve been experiencing a burning sensation on the inside of my right forearm that hurts to touch. I am wondering what these new symptoms could be.”

One reason for a warm sensation in the skin, often accompanied by discoloration and swelling, is a skin condition called erythromelalgia. Erythromelalgia, a rare condition that may be seen in some people with lupus, often affects the hands and feet on both sides of the body.

Erythromelalgia is thought to worsen when you’re warm, in situations such as taking hot showers, being in warm weather, and exercising. This warm sensation tends to go away within a few minutes. Speak to your doctor if you experience burning accompanied by skin discoloration, so they can help you identify its causes and prevent it from happening in the future.

3. Biting or Stinging

A MyLupusTeam member explained, “I have started feeling like something is biting or pricking me, but when I look, there’s nothing there! It happens on my arms and legs, in different environments, and at different times of the day. It’s getting more and more frequent.”

Another shared, “I have the stinging like bug bites that are up and down my legs, body, and arms.”

A potential cause of stinging sensations in people living with lupus is peripheral neuropathy. Peripheral neuropathy occurs when the nerves become damaged. Lupus commonly causes damage to the myelin protein that coats the nerves of your body. This damage can leave the nerves susceptible to feeling and sending random signals, including burning. Even when there’s no visible or external reason for this sensation, the nerves inside your body release the signals that you feel on the surface of your skin.

Treating this sensation requires treating the underlying immune response. Share any skin symptoms, such as burning sensations, with your rheumatologist so they can determine whether you’re experiencing peripheral neuropathy. They can factor this information into your treatment plan.

4. Crawling

People with lupus may experience a crawling sensation on top of their skin and/or in other areas, such as in the nose, mouth, or throat. “I feel like something is crawling around my mouth or nose — my eyes, too,” one member wrote. Another described a sensation of “bugs underneath the skin.”

This phenomenon is a type of paresthesia, or abnormal sensation. Without warning, some people with lupus may feel painless yet uncomfortable numbness, tingling, and crawling on the skin of their arms, legs, feet, or other areas. This sensation can vary slightly for everyone but is known to occur among people living with lupus and other autoimmune diseases.

According to the Lupus Foundation of America, lupus often damages the nervous system in the body by causing inflammation of the tissue around the nerves. This damage leads to paresthesias like crawling, burning, numbness, and tingling.

Talk to Your Doctor About Skin Sensations

For many people with lupus, these nervous system symptoms are treatable with a doctor’s help. Skin-related symptoms can be a challenging aspect of living with lupus. Itching, burning, and biting sensations are among the most common complaints. Although these symptoms can be uncomfortable, they can also be managed with proper treatment and care.

If you’re experiencing skin-related symptoms, talk to your doctor to figure out the underlying cause and develop an effective treatment plan. With the right approach, many people with lupus can find relief from their skin-related symptoms and improve their overall quality of life.

Meet Others Who Understand

On MyLupusTeam, people share their experiences with lupus, get advice, and find support from others who understand.

Have you experienced burning, itching, or other skin sensations since being diagnosed with lupus? Let others know in the comments below.