Among other unusual symptoms, lupus can cause a cool, tingling feeling that some people describe as a menthol sensation. “My hands and feet feel like I’ve doused them in menthol. Cool and tingly. I have full use and mobility. Wondering if anyone else has this?” one MyLupusTeam member asked.

“I get this a lot,” another member replied. “My hands feel frozen almost all the time, and they tingle as well.”

Another member described a similar feeling that is both cold and hot: “I have this weird sensation in my arm — from my shoulder down to my elbow. It feels like I have an ice pack on my arm. Yet the inside of my arm feels like it’s burning. It’s really weird and was really bad when I was in a flare.”

“My legs can be cold in certain spots and warm in others,” another member shared. “I thought it was just me. Glad to know I’m not alone.”

A common cause of sensations like these is peripheral neuropathy. This condition involves nerve pain, muscle weakness, or numbness and can occur as a result of lupus. Another cause may be Raynaud’s phenomenon, a condition that temporarily restricts blood flow to the fingers, toes, or other parts of the body. Both of these conditions are linked to autoimmune disorders such as lupus.

Read on to find out what else may cause these symptoms and what you can do about them.

Neuropathy in Lupus

Lupus is an autoimmune disease in which your own antibodies mistakenly attack healthy tissues in your body due to dysfunction in the immune system. In systemic lupus erythematosus (SLE), the most common type of lupus, this can damage tissues throughout the body, including nerve fibers.

Peripheral neuropathy occurs when nerves outside of the spinal cord and brain are damaged. These nerves are part of the peripheral nervous system, which controls sensation (like touch and temperature) and muscle movements by sending signals to the central nervous system. In peripheral neuropathy, these signals may be experienced as pain or other unusual sensations. Peripheral neuropathy mostly affects hands and feet, but it can affect other parts of the body as well.

Sensations from peripheral neuropathy can vary a great deal. While some people may experience pain, other common symptoms include tingling sensations that feel cool or warm.

Depending on your symptoms and how severe they are, your doctor may suggest tests, such as nerve conduction velocity (NCV) or electromyography (EMG) tests, to evaluate nerve function.

“I finally had a nerve conduction study, and they confirmed it’s neuropathy and not carpal tunnel syndrome. So now I’m waiting to see a neurologist,” said one member of MyLupusTeam.

Sometimes medication can help treat neuropathy and reduce its symptoms. Treatment options may include over-the-counter pain relievers, prescription antidepressants, vitamin B supplements, or anti-seizure drugs.

Raynaud’s Phenomenon

People with lupus can also experience Raynaud’s phenomenon — also known as Raynaud’s disease or Raynaud’s syndrome. About one-third of people living with lupus also have Raynaud’s. Raynaud’s occurs when small arteries temporarily narrow or constrict, restricting blood flow. This can be caused by inflammation in the nerves or blood vessels. As a result, you may feel a cool sensation or tingling, especially in your fingers and toes.

Common triggers for Raynaud’s include cold temperatures, stress, and contact with cold water or objects. When a Raynaud’s episode occurs, fingers or toes may turn white, blue, and then red, as blood flows back to the area. For people with darker skin, the color change may not be as noticeable. As your skin warms up or as stress is reduced, you may experience a warm or tingling feeling as blood flow returns to normal.

“I also have Raynaud’s. Very often my hands hurt and my fingers get numb and tingle,” one MyLupusTeam member shared.

“My feet become really cold and get this purplish-red color, with burning and itching,” another member wrote about their symptoms. “I have kept my feet warm with wicking socks, as advised by my foot doctor, who says it is Raynaud’s. My rheumatologist disagrees, as it has been constant for months.”

Raynaud’s phenomenon is often managed by keeping your fingers and toes warm (for example, by wearing warm gloves and socks) and avoiding exposure to cold or stress. In more severe cases, your doctor may recommend blood tests, medication, or surgery to evaluate the condition and its cause. Since Raynaud’s can be associated with several autoimmune diseases, it’s important to address it to prevent further tissue damage from reduced blood flow.

Other Causes of Tingling in Arms and Legs

Sometimes, lupus occurs alongside other medical conditions. These could be the source of your numbness and tingling, rather than lupus itself. Some of the most common causes are listed below.

Fibromyalgia

Fibromyalgia occurs in 25 percent of people with lupus. Fibromyalgia can cause a range of sensations due to the high sensitivity to pain and temperature it causes. Numbness and tingling — usually in the arms, hands, legs, and feet — are common symptoms. In some cases, you might also feel numbness and tingling in your face.

Hypothyroidism

If your thyroid gland doesn’t produce enough thyroid hormone, you may have a condition called hypothyroidism. This occurs in 15 percent to 19 percent of people living with lupus. If hypothyroidism is left untreated for a long time, it can lead to numbness and tingling. Though the exact reason for this link isn’t fully understood, hypothyroidism can cause you to retain water, which may lead to swelling. This could put pressure on nerves, causing sensations like tingling.

Carpal Tunnel Syndrome

Carpal tunnel syndrome occurs when inflammation puts pressure on one of the major nerves that runs through your hands and wrists. This pressure can cause numbness, tingling, and pain in your hands and wrists. Lupus may be linked to carpal tunnel syndrome. If you live with hypothyroidism, your doctor might recommend an EMG test to check for carpal tunnel syndrome.

Stroke

People living with lupus may be two to three times more likely than the general population to have a stroke. A stroke occurs when the blood supply to part of the brain gets cut off, causing brain cells to die quickly. Strokes are more likely to cause numbness than tingling. If you experience any stroke symptoms, seek medical attention immediately. Early treatment may reduce brain damage and improve recovery.

Avascular Necrosis

Lupus is also linked to a condition called avascular necrosis. In this condition, your bone tissue doesn’t get enough blood flow, causing the bone to die. This condition can sometimes lead to sensations like numbness and tingling, especially in the fingers. Long-term use of corticosteroids, which are often prescribed for lupus, is also a risk factor for developing avascular necrosis.

Discuss Your Symptoms With Your Doctor

Unusual skin sensations are common with lupus. Try to keep track of your symptoms and note when they occur. This will help you discuss them in detail with your doctor.

Your health care provider can help determine whether your symptoms are from lupus or another health condition. They will also work with you to find the best treatment plan for your needs. By sticking to your lupus treatment plan and taking steps to prevent flares, you can help reduce your risk of symptoms such as neuropathy and improve your quality of life.

When To Seek Emergency Care

Sometimes, numbness and tingling may signal a more serious problem that requires emergency care. Seek emergency help right away if you experience any of the following symptoms:

• Weakness
• Inability to move
• Loss of bladder or bowel control
• Uncontrolled movements
• Slurred speech
• Trouble walking
• Vision changes
• Confusion
• Loss of consciousness, even if you wake up quickly after

If you feel numbness or tingling after a fall or an injury, call for help right away, even if it’s the only symptom you notice. This could be a sign that something is wrong. Emergency health care providers are trained to assist in these situations.

Find Your Team

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 232,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you experienced a cool or tingling sensation in your body? Do you have Reynaud’s phenomenon or peripheral neuropathy? Share your experience in the comments below, or start a conversation by posting on your Activities page.