Lupus can be linked to other health conditions, one of which is Raynaud’s disease — also known as Raynaud’s phenomenon or Raynaud’s syndrome. Up to a third of people with lupus develop this condition that temporarily restricts circulation, primarily in fingers and toes. Raynaud’s is a common topic among members of MyLupusTeam.

More than 1,000 members of MyLupusTeam report living with Raynaud’s in addition to lupus, and more may have it without realizing it. “Does anyone else’s fingers turn snow white on and off all day for long periods of time?” one member asked.

Another member had a similar concern: “Is it normal when it’s freezing cold outside for lips to turn gray or purplish? And my fingers and toes turn white if it’s too cold.”

In both conversations, other members responded that the symptoms could suggest Raynaud’s. Their recommendation: Check with your doctor.

Read on to learn more about the symptoms, causes, and management of this potentially serious health condition.

What Is Raynaud’s Disease?

Raynaud’s disease is considered a cardiovascular condition, which means it involves the heart and blood vessels. With Raynaud’s, small arteries that provide blood to the skin become temporarily constricted (narrowed), limiting blood flow and circulation. Cold temperatures can trigger episodes of Raynaud’s symptoms.

“I’m not liking this cold weather, especially with Raynaud’s. Brrrrrr,” one MyLupusTeam member wrote.

“I have to wear mittens or gloves in the cooler and freezer sections of the grocery store,” shared another.

Emotional or psychological stress can also trigger Raynaud’s. Since anxiety, depression, and stress are common among people with lupus, these factors may lead to frequent bouts of Raynaud’s symptoms.

People who have an autoimmune disorder or a connective tissue disease, such as systemic lupus erythematosus (the most common type of lupus), Sjӧgren’s syndrome, scleroderma, or rheumatoid arthritis, have an increased risk of developing Raynaud’s. When Raynaud’s is associated with another condition, it’s also known as secondary Raynaud’s disease. Compared with the primary type, the secondary type tends to develop later in life, usually around age 40. Raynaud’s is more common in women than in men, according to Mayo Clinic.

The cause of Raynaud’s disease isn’t fully understood, but there’s some indication that blood disorders that thicken blood may play a role. In people with lupus, Raynaud’s is believed to be linked to vasculitis — inflammation in blood vessels or nerves. With lupus, the immune system mistakenly attacks healthy tissue throughout the body and can affect organs, the vascular system, and the nervous system. Lupus symptoms can involve most parts of the body.

Symptoms of Raynaud’s Disease

Raynaud’s typically affects fingers or toes, but sometimes other parts of the body may be involved, such as lips, chin, nose, ears, or nipples. Symptoms in the affected area include:

• Coldness
• Discoloration (turning white, red, purple, or blue, depending on skin tone)
• Numbness, tingling, or pain
• Sores or ulcers (in serious cases)

An episode of Raynaud’s usually lasts about 15 minutes. Symptoms typically go away when affected areas are warmed or psychological stress is relieved.

In severe cases, the lack of circulation can lead to tissue damage. Wounds resulting from Raynaud’s tend to heal slowly. “I had to go see a wound doctor to heal an ulcer from Raynaud’s that wouldn’t go away after months,” one member wrote.

“I have Raynaud’s phenomenon, and I’m battling with the longest finger infection ever,” another member said.

Rarely, circulation is completely blocked, bringing a risk of gangrene (death of tissue) and possibly the need for surgery. “Last year, I had to have the tip of my index finger amputated due to Raynaud’s,” shared one MyLupusTeam member.

What Does Raynaud’s Disease Feel Like?

MyLupusTeam members often discuss how the circulatory condition affects them, causing pain, numbness, and tingling that sometimes causes a burning sensation. A feeling of warmth can also occur as symptoms subside.

Members have shared descriptions such as these:

• “It’s cold outside. I have severe Raynaud’s in my feet and hands, and they hurt really badly.”
• “I also have Raynaud’s. Very often my hands hurt, fingers get numb and tingle. This is so frightening!”
• “I have Raynaud’s too. One second I am hot and sweaty, and then the chills.”

Raynaud’s symptoms can even limit activities, as one member noted: “I enjoy crocheting. But sometimes my hands are so numb from the cold, just picking up a hook is difficult.”

Diagnosing Raynaud’s Disease

Your doctor may diagnose Raynaud’s based on your medical history, family history, and symptoms. Sometimes testing is recommended to rule out another underlying cause.

Tests that are used to diagnose Raynaud’s include:

• Nailfold capillaroscopy — Examines capillaries at the base of the fingernail
• Antinuclear antibodies (ANA) blood test — Looks for inflammatory markers in the immune system, particularly if an autoimmune disease has not yet been diagnosed
• Erythrocyte sedimentation rate or C-reactive protein blood test — Can indicate the presence of inflammation

Managing Raynaud’s Disease

Many people with Raynaud’s can manage the condition by avoiding cold temperatures or wearing enough clothing to stay warm in places that are cold, including air-conditioned indoor areas. Hand warmers — packets or devices that produce heat — may be helpful if the chilled feeling persists even when you wear gloves or mittens. It’s also a good idea to pull on gloves to protect your hands when handling cold items.

Managing emotional stress that may trigger Raynaud’s is important, too. Your health care team can provide a referral for mental health counseling if you need help reducing levels of stress. In addition, it’s essential to maintain treatment plans and lifestyle choices that can help minimize disease activity, which in turn can decrease the risk of Raynaud’s syndrome.

When Raynaud’s attacks occur, restoring blood circulation is vital. Quickly take steps to warm affected areas with warm water (not hot) or a heating pad, if possible. You can also put your hands under your armpits for warmth or move your arms in large circles, like a windmill, to boost circulation.

Some people find that compression gloves help prevent episodes of Raynaud’s. “Compression gloves for Raynaud’s increase blood circulation and relieve pain — I wear them all the time,” a MyLupusTeam member shared.

Ask your doctor if compression gloves may be appropriate for you.

Medical Treatment for Raynaud’s Disease

For severe Raynaud’s symptoms, your doctor may recommend medication such as:

• Alpha-blockers to inhibit norepinephrine, a hormone that can cause blood vessels to constrict
• Calcium channel blockers to help open blood vessels or heal ulcers (sores) caused by Raynaud’s
• Nitroglycerin ointment to help heal skin ulcers

In serious cases of Raynaud’s, a surgical procedure called a sympathectomy may be advised. This procedure temporarily cuts or clamps nerves so that they can’t signal blood vessels to constrict.

Complementary treatments that may help reduce the risk of a Raynaud’s attack include exercise, meditation or mindfulness training, and fish oil or magnesium supplements. Always get medical advice before taking supplements — some can have side effects or may interact poorly with medication. In addition, the U.S. Food and Drug Administration (FDA) doesn’t regulate supplements as rigorously as it does medications.

Substances That Raise the Risk of a Raynaud’s Attack

Some medications may increase the risk of Raynaud’s disease developing. These include:

• Appetite suppressants containing pseudoephedrine
• Beta-blockers (treatments for high blood pressure)
• Decongestants that have phenylephrine or pseudoephedrine
• Migraine medications with ergotamine
• Some stimulant drugs, including methylphenidate (treats attention-deficit/hyperactivity disorder, or ADHD)

Check with your doctor if Raynaud’s symptoms appear or worsen after you take certain medications.

Smoking is also a risk factor for Raynaud’s attacks because it can narrow and damage blood vessels. People who have Raynaud’s should avoid or quit smoking. Talk to your doctor if you need help quitting smoking. There’s no need to attempt making difficult changes on your own — your health care team is there to help you with all aspects of your life that affect conditions like lupus and Raynaud’s disease.

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 symptoms of Raynaud’s syndrome with lupus? Share your experience in the comments below, or start a conversation by posting on your Activities page.