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 in 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

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.

The source of itchy skin can sometimes be seen on the skin’s surface in the form of hives. Hives appear in about 10 percent of people with lupus. These hives usually last more than one day and are not brought on by any other usual factors, such as allergies or infection. They are produced from the release of a chemical called histamine and brought on when your body identifies a threat as part of its inflammatory pathway.

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 auto-allergy. Dermatologists can help rule out other common causes of hives before identifying them as a symptom of lupus.

Another visible cause of itching is cutaneous lupus erythematosus (CLE), a form of lupus that primarily affects the skin. Cutaneous lupus can occur with or without systemic lupus. It can be diagnosed with a skin biopsy by a dermatologist, who can help differentiate it from psoriasis, eczema, and other skin conditions.

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 extremely common, affecting 62 percent of MyLupusTeam members and up to 70 percent of people living with lupus. People with CLE can develop other types of rashes as well that can cause itchiness. Discoid lupus, for example, causes thick, raised, scaly patches that are often discolored. They may flake or form a crust on the skin’s surface.

Lupus-related lesions are often painful, irritating, and itchy. If you have been diagnosed with cutaneous lupus, be sure to follow your doctor’s instructions about which topical creams, ointments, and oral medications to take and whether to reduce your sun exposure or wear sunscreen when being exposed to ultraviolet light.

2. Burning

One MyLupusTeam member shared, “I have 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, also known as Mitchell’s disease, is seen in people with lupus and diabetes. It often affects the hands and feet on both sides of the body, and lupus flare-ups are most common during the night.

Scientists aren’t yet sure how erythromelalgia is triggered, but it is thought to get worse from warm conditions, including hot showers, warm weather, and exercise. 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

Another MyLupusTeam member explained, “I have started feeling like something is biting or pricking me, but when I look, there is nothing there! It happens on my arms and legs, in different environments, and at different times of the day. It is 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 is damage to the nervous system due to inflammation triggered by the immune system. According to the University of Chicago Center for Peripheral Neuropathy, lupus commonly causes damage to the myelin protein that coats the nerves of your body. This damage leaves the nerves susceptible to feeling and sending random signals, including burning. Even when there is no visible or external reason for this sensation, the nerves inside your body release the signals that you perceive on the surface of your skin.

Treating this sensation requires treating the underlying immune response. Unfortunately, there have been no large studies conducted to determine the best treatment for peripheral neuropathy in people living with SLE. One older clinical trial published in the journal Annals of the Rheumatic Diseases suggested that cyclophosphamide seemed to treat severe SLE neuropathy better than methylprednisolone.

Share any skin symptoms, such as burning sensations, with your rheumatologist so they can determine whether you are experiencing peripheral neuropathy. They can factor this information into your treatment plan.

4. Crawling

One MyLupusTeam member said they were experiencing a sensation of “bugs underneath the skin.” Another member talked to their rheumatologist about a similar experience, who attributed the crawling sensation to neuropathy caused by fibromyalgia (a condition that causes widespread pain, tenderness, stiffness, and fatigue).

People with lupus may experience this type of crawling sensation on top of their skin and/or in other areas, such as inside of the nose, mouth, or throat. “I feel like something is crawling around my mouth or nose — my eyes, too,” one member wrote. “Does anyone have this or know if it is from having lupus?” Another member replied, “I have it a lot, and it’s really annoying.”

This phenomenon is sometimes referred to as a type of paresthesia. Without warning, some people with lupus may feel painless yet uncomfortable numbness, tingling, and crawling in 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.

The Bottom Line

For many people with lupus, these nervous system symptoms are treatable, if not reversible. Many of the medicines that treat lupus — such as corticosteroids, immunosuppressants, and nonsteroidal anti-inflammatories (NSAIDs) — can also help to reduce paresthesias. For example, prednisone is a steroid that helps reduce inflammation throughout all parts of the body, including the irritation around nerves that cause paresthesias.

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.

Talk With Others Who Understand

On MyLupusTeam, the social network for people with lupus and their loved ones, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

What skin sensations have you experienced while living with lupus? Do you have any tips for others with similar skin symptoms? Share your experience in the comments below, or start a conversation by posting on your Activities page.