Both Banker, of Fort Washington, Maryland, as operations manager for the Army’s Ten Miler run, and Cognion, a data scientist from Alexandria, Virginia, have Raynaud’s phenomenon (also known as Raynaud’s disease), a condition in which exposure to cold causes the blood vessels to the hands and feet to constrict, making fingers and toes white or blue and numb. When they warm up, they often turn red and throb in pain.
Attacks are more likely in winter and in cold climates. But they can occur in any season, even when it’s hot outside.
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“Raynaud’s doesn’t take the summer off,” said Marie Denise Gerhard-Herman, a cardiovascular medicine specialist at Brigham and Women’s Hospital and an associate professor of medicine at Harvard Medical School. “This condition can be easily triggered in summertime situations that involve cold exposure, such as being in 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 is usually associated with another health condition, often autoimmune diseases such as rheumatoid arthritis, lupus or scleroderma. The secondary type can be more serious, sometimes leading to ulcers, tissue damage and even the need for amputations, experts say.
According to the Raynaud’s Association, an estimated 5 to 10 percent of the population has Raynaud’s, the vast majority of the primary type.
Primary Raynaud’s affects more women than men, and usually occurs in people under the age of 30, often beginning during the teenage years. It can run in families, suggesting there may be a genetic connection, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
For most people, primary Raynaud’s disease is nothing more than a nuisance, although it can cause people to leave certain jobs or avoid cold-related activities.
“Some people don’t even think about talking to a doctor about it,” said Maureen Mayes, professor of internal medicine and Elizabeth Bidgood chair of rheumatology at the McGovern Medical School at the University of Texas. “They just think, ‘Oh, I must be cold sensitive.'”
The secondary form can also occur from environmental exposure, or from some medications, including those for hypertension, migraines, or attention deficit/hyperactivity disorder, and work-related exposures, such as repeated use of vibrating machines, while certain chemicals or cold can also initiate it, according to NIAMS.
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Sarah Hoddinott, a self-employed software and fundraising consultant from Belleville, Ontario, discovered she had Raynaud’s when she was diagnosed with rheumatoid arthritis a year ago. “To quote the doctor who first coined the word Raynaud’s: ‘My dear, once you have an autoimmune disease it’s like eating pizza – Raynaud’s is just one of the toppings you could get too'” , she recalls, adding that she often describes it as “a side dish” for her rheumatoid arthritis.
Even certain situations, which are common to people who are not affected, can become problems for people with Raynaud’s disease. But they find ways to deal with it.
“I was recently at an airport and tried to get my bags using a kiosk,” recalls Banker. “My fingers were so cold I couldn’t use the touchscreen. I had to get help from a servant.”
When Cognion goes out to dinner and forgets to bring a koozie, she wraps a napkin around her glass. “When you have Raynaud’s, glassware is your friend,” she adds. She spends some of her time in Hawaii, where it’s easier to get along with Raynaud. Still, even when she’s there, she takes steps to keep her Raynaud’s under control.
“I wear fingerless typing gloves in the air-conditioned offices,” she says. “I also wore them in my office here on the mainland before I started working remotely. The bad thing about the typing gloves is that the fingers stick out, but it’s the best I can do.”
If she’s indoors and sedentary, even 70 degrees can feel cold, she says. It’s worse if she opens the freezer or washes products under cold water, inconvenient because she eats a lot of fresh fruits and vegetables.
“I try to be quick when moving items in the freezer,” she says. Also, “even at 70 degrees, I probably wear more layers indoors than other people,” she says.
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She relies on mittens when she runs outside when the temperature drops below 70 degrees – they keep fingers warmer than gloves and place air-activated chemical hand warmers in the mitts when the outside temperature drops below 62 degrees. “They are a lifesaver,” she says.
Also, Hoddinott uses heated gloves and mittens and wears them every time she goes outside for more than a minute or two. “Last summer, when the temperature dropped to…64 Fahrenheit, I had to start wearing them because my fingers would go numb and white four or five times a day,” she says. “I also have a small heater on my desk so I can warm up my fingers a bit when I’m in a meeting. Otherwise they will remain sedated until I run them under warm water for a few minutes.”
Hoddinott, a former resident of Rockville, Maryland, eschewed air conditioning when she lived in the suburban area of DC, despite the often sweltering weather. “The shock from very hot to very cold was always uncomfortable, so I would [set] my air conditioner at 85 [Fahrenheit] and I feel quite comfortable,” she says. “But every time I step into an air-conditioned room because of the heat… my fingers immediately start to go numb.”
Gerhard-Herman advises her patients to give up caffeine or drink just one cup of coffee a day and avoid ADHD medications that “stimulate the narrowing of the arteries in fingers and toes,” she says.
Mayes, who also directs the university’s scleroderma clinic, recommends keeping the central body warm to prevent the body from drawing heat away from the limbs to protect the core, a survival reflex. “Wear an extra layer — a sweater or jacket — even in the summer,” she says.
Raynaud’s is not curable. But some treatments can help. While there are no approved medications for Raynaud’s, doctors sometimes prescribe medications used for other conditions, such as vasodilators, that improve circulation by opening blood vessels. “The problem is that they can also lower blood pressure and can make people 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 destroy the nerves that cause narrowing of the blood vessels. It can improve symptoms, but according to NIAMS, it may need to be repeated after a few years.
Finally, experts also urge Raynaud’s patients to try to ignore the insensitive comments of others who find wearing gloves in the summer and other behaviors strange.
“I had a patient tell me that after she shook hands with someone, the other person said, ‘What’s wrong with you? Are you dead?’ That was a terrible thing to say,” Mayes said. “I tell my Raynaud’s patients to just say, ‘I’m cold sensitive’ — and leave it at that.”