Feeling like something is crawling under the skin is a common skin sensation experienced by some people with systemic lupus erythematosus (SLE), and in some cases, this symptom may affect your scalp.
“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.
Lupus is an autoimmune disease characterized by the immune system attacking itself, but it can affect many different systems in the body, including the nervous system. The feeling that something is crawling on your scalp may be accompanied by other symptoms like pain or numbness in various parts of the body.
Learn more about what may be causing that creepy, crawling sensation on your scalp or other parts of your body, and how it can be managed.
A crawling sensation on your scalp can be extremely bothersome — you may feel like something’s there, walking around on your head, but you know there’s nothing for you to brush off. One MyLupusTeam member described the feeling as “hair falling across my face.”
The crawling sensation may not just be limited to the head. As one member put it, “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 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.”
A crawling sensation might be accompanied by other skin symptoms like itching, skin rashes (such as a butterfly rash), or sensations of having tiny bugs biting your 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.”
A crawling feeling on your skin may be one of the neurological symptoms of lupus due to how this disease affects the nervous system. It may also be caused by medication or light sensitivity.
It’s important to talk with your health care provider to determine the cause and get medical advice on management. Getting an accurate picture of the cause of the crawling sensation is the first step to managing it.
Lupus can cause nerve damage by prompting inflammation of the nerves or tissues surrounding the nerves. Damage to the peripheral nerves — the ones outside your brain and spinal cord (the central nervous system) — can result in peripheral neuropathy.
One of the common symptoms of peripheral neuropathy is paresthesia (abnormal tingling or prickling sensation), along with numbness and the inability to move parts of your body. Paresthesia may make it feel like something is crawling across your skin.
While paresthesia usually affects the arms, legs, feet, and hands, you can experience it anywhere in your body, including your scalp. For example, if the damaged nerves are on or near your head, such as the occipital nerves, you may feel a tingling sensation on your scalp.
If peripheral neuropathy is at the root of why your scalp is tingling, you might experience other symptoms, such as:
According to the Lupus Foundation of America, almost all medications for lupus management can potentially lead to side effects that impact the nervous system. For example, leflunomide (Arava) may lead to peripheral neuropathy, which could in turn cause that 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 medications. 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 to your health care provider if you’re wondering whether any of your medications are leading to that crawling sensation. Ruling out medication as the cause is an important step to curbing the skin-crawling feeling.
Photosensitivity (sensitivity to light) is common among people with lupus — as many as 70 percent of people with lupus say their symptoms are worse when exposed to ultraviolet (UV) light, according to the Lupus Foundation of America. UV light exposure can trigger a lupus flare, which can prompt symptoms like tingling, numbness, pain in the joints, and tiredness. UV light can come from both the sun and artificial indoor lighting.
Experiencing tingling after being exposed to sunlight or UV light may be a sign of a flare-up. Be sure to take steps 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.
A crawling sensation on your scalp or elsewhere can be distracting and may impact your quality of life. How to get rid of this symptom will depend on what’s causing it. Talk to your health care provider about what the crawling sensation feels like and if you see any patterns as to when it shows up. For example, does it last for days on end, 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 crawling feeling.
Getting to the bottom of the cause may include 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 other symptoms you know to be a sign of a flare, consider revisiting your treatment plan with your provider to better prevent flares and keep symptoms like a creepy, crawling sensation at bay.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 222,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Do you have lupus and get a crawling sensation on your scalp? How have you managed a skin-crawling sensation? Share your experience in the comments below, or start a conversation by posting on your Activities page.