Among other unusual symptoms, lupus can cause a cool or tingly 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?” a MyLupusTeam member asked.

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

Another member wrote about 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 another,” a member replied. “I thought it was just me. Glad to know I’m not alone.”

A common cause of sensations like this is peripheral neuropathy. This condition involves nerve pain, muscle weakness, or numbness and can occur with lupus. Another cause may be Raynaud’s phenomenon, which temporarily restricts blood circulation in 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 prompts these symptoms and what you can do about them.

Neuropathy in Lupus

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

Peripheral neuropathy occurs when nerves outside of the spinal cord and brain are damaged. The peripheral nervous system controls sensation and muscle movements. It sends signals to the central nervous system, which may be experienced as pain or other 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 considerably. While some people may experience pain, other common symptoms include tingling sensations that feel cool or warm.

Raynaud’s Phenomenon

People with lupus can also be affected by Raynaud’s phenomenon — also known as Raynaud’s disease or Raynaud’s syndrome. With Raynaud’s, blood flow is disrupted by a temporary restriction of small arteries due to inflammation in nerves or blood vessels. This can cause a cool sensation or tingling, primarily in the fingers and toes.

Raynaud’s is usually triggered by cold temperature or stress. Fingers or toes may turn white or blue. With darker skin, a color change may not be so apparent. As skin warms, or as stress is reduced, there may be a warm or tingling feeling as proper circulation is restored.

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

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

Discuss Your Symptoms With Your Doctor

Unfamiliar skin sensations are common with lupus. Try to keep track of your symptoms and when they occur by taking notes so you can discuss them in detail with your doctor.

Your health care provider can help determine whether or not your symptoms are from lupus or another coinciding health condition, such as fibromyalgia, which occurs in 25 percent of people with lupus. Fibromyalgia can cause a range of sensations due to high levels of sensitivity to pain and temperature.

Depending on your particular condition and the severity of your symptoms, your doctor may suggest testing, such as nerve conduction velocity (NCV) or electromyography (EMG) tests, to evaluate nerve function. Sometimes medication is a treatment option for neuropathy, such as over-the-counter pain relievers, prescription antidepressants, or anti-seizure drugs that can be effective in reducing neuropathy symptoms.

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

Raynaud’s phenomenon is often managed by keeping fingers and toes warm. In more severe cases, blood tests, medication, or surgery may be advised to evaluate the condition and prevent further damage to tissue due to reduced blood circulation.

By sticking to your lupus treatment plan and taking steps to prevent flare-ups, you can help reduce the risk of symptoms such as neuropathy.

Find Your Team

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 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? 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.