In Winter's Grip
Poor Circulation, White Fingertips and a 19th Century French Physician Named Raynaud Tell a Story Too familiar to 5 to 10 Percent of the American Public
By Barbara H. Rietveld
Special to The Washington Post
Tuesday, January 13, 2004
"What's wrong with your hands!" the cashier exclaimed. It really wasn't so much a question as an observation. My hands had turned a deep red, with purple blotches and white fingers that looked like those you see on a marble statue. I looked down as if I were seeing them for the first time. I was actually trying to decide which of my stock responses to use:
- "Oh, my God, you're right!! What happened to my hands?"
- "Hello? Do you think I like having that pointed out to me?"
- "I have a very serious disease that I can't talk about."
But instead, I said, "Yeah, well, I have a condition. It looks worse than it feels."
I have Raynaud's disease, an autoimmune condition that causes some areas of the body -- mainly fingers and toes, but in some cases, the tips of the nose and ears -- to feel numb and cold in response to cold temperatures or stress. This circulatory disorder named for 19th-century French physician Maurice Raynaud, who first described it, is marked by periodic "vasospastic attacks" that cause the blood vessels in the digits to tighten and narrow.
In my case, my fingers and toes turn white when I'm cold or stressed, and they hurt. It can take between five and 25 minutes for the blood to start flowing freely again and for them to feel warm. It is difficult for me to use my hands during an episode, and painful when my fingers start to "thaw." It can happen indoors as well as outdoors, in the summer when the air conditioning is on too high or on a windy fall day. But the worst season for Raynaud's is winter.
Raynaud's can be one of two types: primary (or idiopathic, where there is no underlying disease and the cause is unknown), and secondary (also called Raynaud's phenomenon, where the condition is part of another disease).
Primary Raynaud's is milder, and causes fewer complications. About half of all cases are of this type. Women are more likely than men to develop primary Raynaud's disease. About three-quarters of all cases are diagnosed in women between the ages of 15 and 40. Approximately three out of 10 people with primary Raynaud's disease eventually progress to secondary Raynaud's disease. Although estimates vary, surveys cited by the National Institute of Arthritis and Musculoskeletal and Skin Diseases, or NIAMS, (www.niams.nih.gov) suggest that Raynaud's phenomenon may affect 5 to 10 percent of the U.S. population.
The First Blotch
I developed Raynaud's 17 years ago, when I was 40. I woke up with cold hands one morning in late November, a few weeks after recovering from a bad case of the flu. My hands looked strange and got blotchy when I was cold, but as the days passed, I simply got used to them.
A few weeks later, however, when my dentist noticed my hands during a routine checkup and suggested that I see a specialist in rheumatic diseases, I could no longer pretend that the problem was just the cold weather.
After taking a detailed medical history and conducting a physical to rule out other conditions, the rheumatologist diagnosed Raynaud's. His job might have been easier if I'd had a vasospastic attack during the office visit. Instead, the he had to rely on my description of what happened to my hands when I got cold. "Triphasic response -- blanching, cyanosis and resolution of the digital vasospasm provoked by exposure to cold" is the medical jargon. Roughly translated, it means having a white, blue and red response: Blanching represents the lack of adequate blood flow brought on by constriction of the arteries. Cyanosis -- or blue coloring -- results from deoxygenated blood in capillaries and small veins. Re-warming of the fingers causes them to look red.
After making his diagnosis, the doctor proceeded to tell me much more than I wanted to know about the potential complications. While I was still getting used to the fact that I had a condition, he was talking about connective tissue disorder, lupus, scleroderma, obstructive arterial diseases, neurogenic lesions, polyarthralgia, dysproteinemias, myxedema, primary pulmonary hypertension, etc. Did I need to know all that detail then? My anxiety went into overdrive.
Later, my internist calmed me down. "You'll probably die with this, but not from it," he said with his usual mordant humor. He reminded me that I was otherwise in excellent health and that there were measures I could take to reduce the number and severity of attacks, and to prevent tissue damage in the fingers and toes.
The first obvious measure is to keep warm -- not only in the extremities but in all parts of the body. NIAMS recommends that if you get cold enough to provoke an episode, warm your hands and feet by going indoors; if you are indoors, find someway to get warmer: turn down the air conditioning, put on another sweater, drink some hot tea. Quit smoking -- nicotine causes the skin temperature to drop, which may lead to an attack. Control stress, which tends to make me tense my muscles, including those in my hands. Exercise regularly.
Biofeedback techniques also offer an intriguing means for mediating abnormal response to cold or stress. Six months after I was diagnosed, I enrolled in a biofeedback course. Biofeedback uses machines that monitor heart rate, temperature, muscle tension, skin conductivity and brain waves. The instructor attached sensors to my fingers, wrist, chest and forehead. The machines translated my body functions into signals that I could read.
Through trial and error and lots of practice, I learned how to regulate my breathing, my blood flow and the temperature in my hands by concentrating to relax different muscle groups. After five weeks of once-weekly sessions and daily practice at home using instructional tapes, I could raise the temperature in my hands by 12 degrees -- from 68 to 80 -- in less than 10 minutes. The catch is that unless you practice daily, you lose this ability. While I am now out of practice and can no longer perform this sleight of hand at will, I know that I could regain that ability.
Several medications are also used to relieve the symptoms of Raynaud's, particularly in severe cases: Calcium-channel blockers can decrease the frequency and severity of attacks by relaxing and dilating small blood vessels in the hands and feet. Alpha blockers can reduce the body's response to norepinephrine, a naturally occurring hormone that constricts blood vessels. Vasodilators, drugs that relax blood vessels, are also prescribed.
Like all drugs, however, these medications work better in some people than in others, and have side effects.
So far, by choice, I've made do without the drugs. Seventeen years after my diagnosis, I've learned to live with Raynaud's. I always carry gloves, and if there is even the remotest possibility that I will feel cold, I take an extra jacket. I gave up smoking. I work out four or five days a week. I drink good scotch -- to "warm up" before dinner and only for medicinal purposes, of course. Okay, so what if no doctor endorses this practice? It's a relatively mild delusion.
Since my diagnosis, I always look at people's hands. I've learned to spot Raynaud's from a distance. One cold and windy day many years ago, I was watching my son play soccer. Despite my turtleneck, sweater, jacket, scarf and gloves, my hands were still cold. I was holding them under my armpits, when I noticed the hands of the woman next to me. Three fingers of her right hand were white and the rest of the hand was red. She looked surprised when I asked if she had Raynaud's.
"How did you know?" she asked.
Today I would think, "Like, du-uh."
But then, my anxiety level was higher, and meeting a sister sufferer was reassuring.
"Me, too," I said, and showed her my fingers; it was the beginning of another friendship.•
Barbara Rietveld is a Washington area freelance writer
Created on ... January 13, 2004