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“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.
Some people with systemic lupus erythematosus (SLE, or lupus) notice a crawling feeling on their skin. In some cases, you might even feel like you have bugs on your scalp, but nothing is there.
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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. That crawling feeling on your scalp may come with other symptoms, too, like pain or numbness in different parts of your body.
Learn more about what may be causing that crawling sensation on your scalp or elsewhere — and how it can be managed if you’re living with lupus.
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 laundry 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 notice other skin symptoms too, like itchiness or a rash. Some people develop a malar (butterfly-shaped) rash across their cheeks or feel tiny bites even though there are no bugs on their skin. 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.”
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.
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 nits (eggs) that can look white, cream-colored, or brown depending on their stage. Nits can look similar to dandruff but, unlike dandruff flakes, they’re 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 a dermatologist or healthcare provider for diagnosis and treatment. If you don’t see nits or head lice on your scalp, something else is likely causing the sensation.
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 develop if your immune system is suppressed, which may happen in people with lupus taking immunosuppressive medications. Talk to your healthcare provider or dermatologist if you think you have mites. They can make a diagnosis and provide you with treatment options.
Lupus can damage nerves by causing inflammation in the nerves or tissues around them. If this happens in the nerves on or near your head, you might feel tingling 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, talk to your doctor to rule out nerve damage.
Many lupus medications can cause side effects that affect the nervous system. For example, leflunomide may lead to a type of nerve damage called peripheral neuropathy, which can cause a crawling feeling in your hands and feet. Tingling in the hands and feet can be a side effect of cyclosporine.
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 healthcare provider if you experience symptoms like a crawling sensation after starting a new lupus medication. Ruling out medication as the reason is an important step toward curbing the skin-crawling feeling.
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 the sun and indoor lighting.
A tingling feeling after exposure to UV light may be a sign of a flare-up. Be sure to protect yourself from the sun by using sunscreen and wearing protective clothing when you’re outside. Let your healthcare provider know if any medications seem to make you more sensitive to the sun or light.
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.
Hallucinating the feeling of insects crawling on your skin is called formication. The sensation occurs because your brain is misinterpreting touch signals from your skin, causing a type of tactile hallucination.
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.
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 healthcare 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 healthcare 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, so you might need other tests to understand what’s causing your symptoms.
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 lupus flare, consider revisiting your treatment plan with your provider to better prevent flares and keep symptoms like a crawling sensation at bay.
On MyLupusTeam, people share their experiences with lupus, get advice, and find support from others who understand.
How have you managed a skin-crawling sensation? Have you noticed any patterns or triggers that cause this feeling? Let others know in the comments below.
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