Raynaud’s Disease – The Washington Post

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George Banker keeps a pair of hand warmers in his car in case he needs them to get groceries. Without them, walking down the freezer aisle will turn his fingers white, then numb. Rita Cognion has a stock of “koozies” at home, polyurethane foam sleeves used to keep bottles and cans of drinks cold. In her case, she stretches them to fit around a frozen glass, thus protecting her hands from the cold.

Banker, of Fort Washington, Md., and director of running operations for Army Ten Miler, and Cognion, a data scientist from Alexandria, Va., have Raynaud’s phenomenon (also known as Raynaud’s disease), a condition in which exposure to cold causes the blood vessels in the hands and feet to constrict, making the fingers and toes white or blue and numb. As they heat up, they often turn red and throb with pain.

Attacks are more likely in winter and in cold climates. But they can happen in any season, even when it’s hot outside.

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“Raynaud doesn’t take the summer,” says Marie Denise Gerhard-Herman, a specialist in cardiovascular medicine at Brigham and Women’s Hospital and associate professor of medicine at Harvard Medical School. “This condition can be easily triggered in summertime situations that involve cold exposures like going to the cold ocean or the freezer aisle of the grocery store, or an air-conditioned theater.”

There are two types of Raynaud’s phenomenon – primary and secondary. The primary form has no identified cause, experts say, while the secondary form usually accompanies another health condition, often autoimmune diseases such as rheumatoid arthritis, lupus or scleroderma. The secondary type can be more serious, sometimes resulting in ulcers, tissue damage, and even the need for amputations, experts say.

An estimated 5 to 10 percent of the population has Raynaud’s, the vast majority of the primary type, according to the Raynaud’s Association.

Primary Raynaud’s disease affects more women than men and usually occurs in people under the age of 30, often beginning during adolescence. It can run in families, suggesting there may be a genetic link, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

For most people, primary Raynaud’s is nothing more than a nuisance, although it can cause people to quit certain jobs or avoid cold-related activities.

“Some people don’t even think to tell a doctor about it,” says Maureen Mayes, professor of internal medicine and Elizabeth Bidgood Professor of Rheumatology at the University of Texas McGovern Medical School. “They just think, ‘Oh, I must be sensitive to the cold.'”

The secondary form can also occur as a result of environmental exposure or certain medications, including those for hypertension, migraines, or attention deficit/hyperactivity disorder, among others – and work-related exposures, such as repeated use of vibrating machinery, while certain chemicals or cold weather can also initiate it, according to NIAMS.

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Sarah Hoddinott, a freelance software and fundraising consultant from Belleville, Ontario, learned she had Raynaud’s disease when she was diagnosed with rheumatoid arthritis a year ago. “To quote the doctor who first used the word Raynaud’s: ‘My dear, once you have an autoimmune disease it’s like having a pizza – Raynaud’s is just one of the toppings you could also get,” she recalls, adding what she often describes as an “accompaniment” to her rheumatoid arthritis.

Even certain situations, commonplace for the unafflicted, can become problems for people with Raynaud’s disease. But they find ways to cope.

“I was recently at an airport trying to retrieve my luggage using a kiosk,” Banker recalls. “My fingers were so cold that I couldn’t use the touch screen. I had to ask an attendant for help.

When Cognion is dining out and forgets to bring a koozie, she wraps a napkin around her drink. “When you have Raynaud’s, stemware is your friend,” she adds. She spends part of her time in Hawaii, where it is easier to take care of Raynaud. Yet even there, she takes steps to keep her Raynaud in check.

“I wear fingerless typing gloves in overly air-conditioned offices,” she says. “I also wore them in my office here on the mainland before I started working remotely. The downside of typing gloves is that the fingers stick out, but that’s the best I can do.

When she’s indoors and sedentary, even 70 degrees can feel chilly, she says. It’s worse when she opens the freezer or washes the produce under cold water, which is bothersome because she eats a lot of fresh fruits and vegetables.

“I try to be quick when moving items around the freezer,” she says. Plus, “even at 70 degrees, I probably wear more layers indoors than others,” she says.

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She relies on mittens when running outside if the temperature drops below 70 degrees – they keep fingers warmer than gloves and put air-activated chemical hand warmers inside mittens when outside temperatures drop below 62 degrees. “They’ve been a lifesaver,” she says.

Hoddinott also uses heated gloves and mitts and wears them whenever she goes outside for more than a minute or two. “Last summer, when the temperature dropped to…64 degrees Fahrenheit, I had to start wearing them because my fingers were going numb and white four or five times a day,” she says. “I also have a little heater on my desk so I can warm up my fingers a bit if I’m on a conference call. Otherwise they stay numb until I run them under warm water for a few minutes.

Hoddinott, a former resident of Rockville, Md., avoided air conditioning when she lived in the suburbs near DC, despite the often sweltering weather. “The shock from very hot to very cold was always uncomfortable, so I wanted [set] my air conditioner at 85 [Fahrenheit] and feel quite comfortable,” she says. “But every time I walk into a heavily air-conditioned space because of the heat…my fingers immediately start going numb.”

Gerhard-Herman advises his patients to ditch caffeine or stick to one cup of coffee a day and avoid ADHD medications that stimulate “narrowing of the arteries in the fingers and toes,” says -she.

Mayes, who also runs the university’s scleroderma clinic, recommends keeping the core body warm to prevent the body from drawing heat from the extremities to protect the core, a survival reflex. “Wear an extra layer — a sweater or a jacket — even in the summer,” she says.

Raynaud has no remedy. But some treatments can help. Although there are no approved drugs for Raynaud’s disease, doctors sometimes prescribe drugs used for other conditions, such as vasodilators, which improve circulation by opening up blood vessels. “The problem is that they can also lower blood pressure, and people can get dizzy and lightheaded,” Mayes says.

For people with severe Raynaud’s, a doctor may recommend a sympathectomy, a procedure performed by incision or injections that destroys the nerves that trigger the narrowing of blood vessels. It may improve symptoms, but may need to be repeated after several years, according to NIAMS.

Finally, experts are also urging Raynaud’s patients to try to ignore insensitive comments from others who find wearing gloves in the summer and other behavior odd.

“I had a patient who told me that after shaking someone’s hand, the other person said, ‘What’s wrong with you? Are you dead?’ It was a terrible thing to say,” Mayes says. “I tell my Raynaud patients to just say, ‘I’m sensitive to cold’ – and leave it at that.”

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