When Michelle Richard was in her teens, she noticed the tip of one finger would periodically feel cold, turn dead white and then go a purplish-red colour.
“I would keep rubbing it until it got warm again and the blood started returning again to the finger,” says Richard, 48, of Halifax, who thought the blanching of her finger might have been a long-term effect of frostbite from childhood.
But by the time she was in her mid-30s, the sudden loss of colour and feeling had encompassed all her fingers and toes, and she found out her condition had a name – Raynaud’s disease.
In her case, it was linked to the development of an autoimmune disease called scleroderma, which causes a hardening of skin and connective tissues, and in some people can affect blood vessels and internal organs.
Raynaud’s also affects blood vessels, specifically the small arteries that supply blood to the skin in the extremities, causing them to constrict and cut off normal flow.
It’s likely Richard’s adolescent experience was due to so-called primary Raynaud’s disease, a stand-alone condition unrelated to another disorder, which often begins between ages 15 and 30. Secondary Raynaud’s, also called Raynaud’s phenomenon, occurs in the presence of such autoimmune diseases as scleroderma, lupus and rheumatoid arthritis.
“If I’m having an attack, people will say, ‘Oh my God, what’s wrong with your hands?”‘ says Richard. “And certainly when they start to come back and you’ve got that bluish-red (colour), it almost looks like your hands are bruised.”
Doctors aren’t sure why some people are prone to the disorder, but it isn’t caused by frostbite. There may be a genetic component and it’s more common among those who live in cold climates. Smoking, which constricts blood vessels, is also considered a contributor.
“The colour change means decreased blood flow to the digits, so that will sometimes mean unpleasant sensations, possibly pain or feeling very cold,” she says. “The whole experience is due to these blood vessels that are oversensitive in a way and tend to constrict far more quickly and far more vigorously than we normally would see.
“Classically, it’s cold, but anything that constricts the blood vessels, like stress, could perhaps bring on symptoms.”
Certain jobs, such as those requiring repetitive use of jackhammers that expose the hands to intense vibration, can also lead to the development of the disease, as can vigorous or prolonged periods of playing the piano.
There are no official statistics on how many Canadians have Raynaud’s, although the disorder is considered common. More women than men appear to have the disorder, in part because women are far more likely to develop autoimmune diseases, Bernatsky says. For instance, 90 per cent of lupus patients are female.
Attacks can affect just one or two fingers or toes, and the compromised digits aren’t always the same from one episode to the next, says the Mayo Clinic on its website. Although Raynaud’s most commonly strikes the fingers and toes, it can also cause other areas of the body – such as the nose, lips, ears and even nipples – to go numb and change colour, with attacks lasting less than a minute up to several hours.
For most people, Raynaud’s is more a nuisance than a threat to health, but it can limit a person’s activities, Bernatsky says.
“Even just waiting for the bus – a lot of people have to take public transport and that is not always such a pleasant experience. You can try to dress up really well, but sometimes it’s hard to be comfortable.
“And for those people who get it year-round, it’s quite annoying that you always have to think about how to dress,” she says, explaining that even going into an air-conditioned shopping mall from the summer heat can trigger an attack in some people.
Richard, who can have three or four episodes a day, says she has had to leave malls and restaurants on occasion when too-cold air-conditioning brings on an attack, and she has to remember to cover her hands when reaching into the freezer for food.
“Even if it’s a summer day and I’m biking, sometimes with the wind it’s cold and the temperature changes, so I always wear thin gloves,” Richard says.
When outside in frigid winter temperatures, she says her toes can be numb to the point of feeling dead. “You’re walking on them, but … they’re like stumps or something.” So she will sometimes put commercial heat-producing packets inside her boots and gloves to keep her hands and feet toasty to avoid an attack.
For people affected year-round, doctors may prescribe a drug to dilate the blood vessels to prevent attacks, such as a calcium channel blocker or a vasodilator.
Some medicines, among them beta blockers prescribed for high blood pressure, can constrict blood vessels and worsen the problem, so a medication switch may be needed, said Bernatsky.
Other drugs that have been linked to Raynaud’s include migraine medications that contain ergotamine; birth control pills containing estrogen; certain chemotherapy agents; and drugs that cause blood vessels to narrow, such as some over-the-counter cold medications, says the Mayo Clinic.
In severe cases of Raynaud’s, there is a danger of infection in fingers or toes that repeatedly lose their blood supply – which can lead to subsequent loss of tissue, either through spontaneous or surgical amputation.
“I’ve seen auto-amputation where the blood circulation was so compromised, there’s a kind of gradual dying off of the tissues, so a person is left with a shorter finger, very abnormal nails or maybe no nail on a finger that has been affected,” Bernatsky says.
“Without adequate circulation, the digit does kind of die a slow death; it’s like a slow process of gangrene,” she says. “But it’s by no means a common complication.”
Richard had a finger that became ulcerated due to her Raynaud’s about 10 years ago – and that one experience was enough.
“I ended up having to go to a wound nurse for almost a month, twice a week,” she says. “That alone has made me be really careful with my hands because it was excruciating.”