Both Fort Washington, Md., bankers and operations managers of the Army Ten Miler Foot Race, as well as Cognion, a data scientist from Alexandria, Virginia, have Raynaud’s phenomenon (also called Raynaud’s disease), a condition that involves exposure to cold is causes the blood vessels in the hands and feet to narrow, and the fingers and toes to turn white or blue and numb. When they warm up, they often turn red and throb with pain.
Attacks are more likely in winter and cold climates. But they can happen at any time of the year, even when it’s hot outside.
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“Raynaud’s doesn’t take summer off,” says Marie Denise Gerhard-Herman, a cardiovascular medicine specialist at Brigham and Women’s Hospital and associate professor of medicine at Harvard Medical School. “This condition can be easily triggered in summer situations that involve exposure to cold, such as Going to the cold ocean, or to the grocery store freezer, or to 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 like rheumatoid arthritis, lupus, or scleroderma. The secondary type can be more serious, sometimes leading to ulcers, tissue damage, and even amputation, experts say.
According to the Raynaud’s Association, an estimated 5 to 10 percent of the population has Raynaud, the vast majority of the primary type.
Primary Raynaud’s syndrome affects more women than men and usually occurs in people under the age of 30, often starting in their teens. It can run in families, suggesting there’s a genetic link, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
For most people, primary Raynaud’s syndrome 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 about talking to a doctor about it,” says Maureen Mayes, professor of internal medicine and Elizabeth Bidgood Chair of Rheumatology at the University of Texas McGovern Medical School. “You’re just like, ‘Oh, I must be sensitive to the cold.'”
The secondary form can also occur from environmental exposure or from some medications, including for high blood pressure, migraines, or attention-deficit/hyperactivity disorder, among others, and work-related exposures such as repeated use of vibrating machinery, certain chemicals, or exposure to cold can also trigger it, according to NIAMS.
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Sarah Hoddinott, a freelance software and fundraising consultant from Belleville, Ontario, learned she had Raynaud when she was diagnosed with rheumatoid arthritis a year ago. “To quote the doctor who first used the word Raynaud’s, ‘Darling, once you have an autoimmune disease, it’s like eating pizza — Raynaud’s is just one of the toppings you might get, too,'” she recalls and adds that she often describes it as an “accompaniment” to her rheumatoid arthritis.
Even certain situations that are commonplace for unaffected people can become problems for people with Raynaud’s disease. But they find ways to deal with it.
“I was at an airport recently and was trying to get my luggage through a kiosk,” Banker recalls. “My fingers were so cold that I couldn’t use the touchscreen. I had to get help from an attendant.”
When Cognion eats out and forgets to bring a koozie, she wraps a napkin around her glass. “If you have Raynaud’s, stemmed glasses are your friend,” she adds. She spends part of her time in Hawaii, where Raynaud is easier to deal with. But even there, she’s taking steps to keep her Raynaud’s disease under control.
“I wear fingerless writing 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 writing gloves is that the fingers stick out, but that’s the best I can do.”
When she’s indoors and seated, even 70 degrees can feel chilly, she says. It’s worse when she opens the freezer or washes food under cold water, which is inconvenient since she eats a lot of fresh fruits and vegetables.
“I try to be quick when moving items around in the freezer,” she says. Also, “even if it’s 70 degrees indoors, I probably wear more layers than other people,” she says.
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She relies on mittens for running outdoors when the temperature drops below 70 degrees – they keep fingers warmer than gloves and tucks air-activated chemical hand warmers into the mittens when the outside temperature drops below 62 degrees. “You were a life saver,” she says.
Hoddinott also 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 keep a small heater on my desk so I can warm my fingers up a bit when I’m on a conference call. Otherwise they stay numb until I hold them under warm water for a few minutes.”
Hoddinott, a former Rockville, Md. resident, avoided air conditioning while living in a suburb near DC, despite the often oppressive weather. “The shock from very hot to very cold was always uncomfortable so I would do it [set] My air conditioner at 85 [Fahrenheit] and I feel very comfortable,” she says. “But every time I walk into a heavily air-conditioned room because of the heat … my fingers go numb immediately.”
Gerhard-Herman advises her patients to avoid caffeine or stick to just one cup of coffee a day and avoid ADHD medications that stimulate “the narrowing of the arteries in your 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 extremities to protect the core, a survival reflex. “Even in the summer, wear an extra layer — a sweater or jacket,” she says.
Raynaud is not curable. But some treatments can help. Although there are no approved medications for Raynaud, doctors sometimes prescribe medications for other conditions, such as: B. Vasodilators, which improve blood flow by opening blood vessels. “The problem is that they can also lower blood pressure and make people dizzy and light-headed,” Mayes says.
For people with severe Raynaud syndrome, a doctor may recommend a sympathectomy, a procedure performed through incisions or injections that destroys the nerves that cause blood vessels to narrow. It can improve symptoms but may need to be repeated after several years, according to NIAMS.
Finally, experts are urging Raynaud patients to try to ignore the insensitive comments of others who find summer glove-wearing and other behaviors 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?’ That was a terrible statement,” says Mayes. “I tell my Raynaud patients to just say, ‘I’m sensitive to cold,’ and leave it at that.”