“I’ve had a creepy, crawling sensation on my scalp for several days, and now it’s moved to my face, along my cheekbones,” one MyLupusTeam member shared.

The feeling of something crawling is a skin sensation some people with systemic lupus erythematosus (SLE, also called lupus) experience. In some cases, you might even feel like you have lice on your scalp, but nothing is there.

Lupus is an autoimmune disease, meaning the immune system attacks healthy body tissues. This disease can affect many of the body’s systems, including the nervous system. The feeling of lice crawling on your scalp may be accompanied by other symptoms, such as pain or numbness, in different parts of the body.

Learn more about what may be causing that creepy, crawling sensation on your scalp or elsewhere and how it can be managed.

What Does a Crawling Sensation Feel Like?

A crawling sensation on your scalp can be extremely bothersome, as though something’s walking around on your head. One MyLupusTeam member shared, “It feels like bugs are underneath my skin. I first thought it was the body wash or washing detergent I was using. It drives me crazy.”

The crawling sensation may not be limited to your head. “I sleep fine, then wake up with a flushed face and ringing ears and feel the most terrible buzzing feeling all over, like crawling critters,” another member said.

You may experience other skin symptoms as well, including itchiness, a rash (such as the characteristic malar, or butterfly, rash), or a feeling of tiny bites when there’s no sign of bugs. One MyLupusTeam member wrote, “I just started having the crawling, stinging, or biting feeling about two months ago. I also got a rash with it.”

Possible Causes of a Crawling Feeling

Lupus symptoms or complications, such as nerve damage, hair loss, mental health issues, or light sensitivity, can sometimes cause a crawling feeling on your scalp. The sensation might also be a side effect of some lupus medications or the result of another medical condition.

Head Lice

A head lice infestation can cause a crawling feeling, but you’d be able to see evidence of the insects by carefully examining your scalp. Head lice are tiny dark bugs that live on human blood and produce yellowish-brown or white nits (eggs). Nits can look similar to dandruff but, unlike dandruff flakes, are hard to pull or flick off your hair. Both dandruff and head lice can cause an itchy scalp and a crawling feeling.

If you think you have head lice or dandruff, you can try over-the-counter or at-home treatments or see your dermatologist or health care provider for diagnosis and treatment. If you don’t see nits or head lice on your scalp, it’s likely something else is causing the sensation.

Mites

Microscopic bugs called mites live on most people’s skin and in their hair follicles. Mites are usually harmless and not noticeable, but if you have too many, you can develop demodicosis. This condition leads to itchy, sensitive skin that could cause a crawling sensation. Demodicosis can occur if your immune system isn’t functioning well, which may be common for people with lupus.

Nerve Damage

Lupus can cause nerve damage by prompting inflammation of the nerves or surrounding tissues. If the damaged nerves are on or near your head, you may feel a tingling sensation on your scalp.

Irritated nerves can lead to occipital neuralgia, which can cause tingling or shooting pain on one side of the scalp. This condition isn’t directly due to lupus, but it may be a result of nerve damage from other lupus complications. If the crawling sensation also feels painful, you should talk to your doctor to rule out nerve damage.

Medication Side Effect

Many medications for lupus management can potentially cause side effects that affect the nervous system. For example, leflunomide (Arava) may lead to peripheral neuropathy and, in turn, a crawling sensation. Tingling in the hands and feet is a common side effect of cyclosporine (sold as Gengraf, Neoral, and Sandimmune).

Some MyLupusTeam members develop this skin symptom when they take certain drugs. One member wrote, “I get that crawling sensation with certain pain medications.” Another replied, “If I take any opioid medication, I get the same reaction. Have not needed any in years, but always had that reaction with the creepy crawly … hated it.”

It’s important to talk with your health care provider if you believe your medications are causing a crawling sensation. Ruling out medication as the reason is an important step toward curbing the skin-crawling feeling.

Light Sensitivity

Photosensitivity (sensitivity to light) is common among people with lupus — as many as 70 percent say their symptoms get worse when they’re exposed to ultraviolet (UV) light. UV light exposure can trigger a lupus flare, which can prompt symptoms like tingling, numbness, joint pain, and tiredness. UV light can come from both the sun and indoor lighting.

Experiencing tingling after exposure to UV light may be a sign of a flare-up. Be sure to take action to manage photosensitivity, including wearing sunscreen and protective clothing when outside. Additionally, let your health care provider know if any medications seem to make you more sensitive to the sun or light.

Hair Loss

One MyLupusTeam member described the crawling sensation as “hair falling across my face.” Alopecia (hair loss) is common with lupus, affecting about 7 in 10 people with this condition. If you notice that your hair is falling out and seems more dry or brittle than normal, hair loss may be causing the crawling feeling.

Usually, the hair will grow back unless it’s falling out because of discoid skin lesions. These thick, scaly patches can block hair shafts and prevent hair growth.

Formication

Hallucinating the feeling of insects crawling on your skin is known as formication. The sensation occurs because your brain is misinterpreting signals from your body, a type of tactile hallucination — it’s related to your sense of touch.

Formication can be linked to mental health conditions, especially those involving psychosis, which makes it hard to tell the difference between what is and isn’t real. Although rare, psychosis has been diagnosed in some people with lupus.

How To Manage the Crawling Feeling

A crawling sensation on your scalp or elsewhere can be distracting and may affect your quality of life. Managing this symptom will depend on the cause. Talk to your health care provider to get medical advice. Offer details about how the sensation feels and any patterns you notice. For example, does the sensation last for days, or does it come and go in certain situations? This can help your care team better understand what may be the underlying cause of the feeling.

Some tests, such as nerve conduction studies, can help if nerves in the limbs are affected. This may be useful if you're experiencing symptoms like tingling, numbness or a crawling sensation. However, this test doesn’t work for all peripheral nerves.

Getting to the bottom of the cause may take some trial and error. For example, if your doctor suspects that a medication is to blame, they may recommend trying a new one. If the crawling feeling is accompanied by symptoms you know are related to a flare, consider revisiting your treatment plan with your provider to better prevent flares and keep symptoms like a creepy, crawling sensation at bay.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 231,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

How have you managed a skin-crawling sensation? Have you noticed any patterns or triggers that cause this feeling? Share your experience in the comments below, or start a conversation by posting on your Activities page.