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Published: April 23, 2007 09:38 am    PrintThis  

Feeling the chill: Raynaud's phenomenon sufferers battle cold hands, feet - and misconceptions

By Julie Kirkwood , Staff Writer
Eagle-Tribune

The grocery store can be a chilly place, even in the summer, but most people aren't affected by it the way Peabody resident Barbara Duffy is.

Duffy tries to keep her hands in her pockets or tucked into her sleeves while she shops, but by the time she gets to the checkout line, her hands are often white or even blue from the cold.

"I can't really feel my fingers so it's hard to get the money out," she said.

Duffy, 59, has a condition called Raynaud's phenomenon. When exposed to cold, her hands lose blood circulation. She has episodes in the winter when she brushes snow off her car, even when she's wearing thick gloves; in the spring and fall when the weather is cool and damp; and in the summer when she's around air conditioning.

"The colder they get, the worse the pain gets," she said.

The New York-based Raynaud's Association, an international support group of about 2,500 patients, estimates that 5 percent to 10 percent of Americans experience the phenomenon, though many may not know they have it.

"They don't know what it is and only one in five seeks treatment," said Lynn Wunderman, the group's founder.

There isn't much research on Raynaud's, either, even though it has been recognized as a medical disorder since 1862.

"Unfortunately, to date, very little has been done to try to better uncover the cause and a cure," Wunderman said.

Yet in recent years, she said, somebody is finally paying attention to this neglected condition: private industry.

"In the last year, more and more manufacturers are finding us and they're asking us to test their products and give endorsements," she said. "There are more people in positions to help us that are actually recognizing us as a market."

Companies that make special warming socks, gloves, wrist wraps, outerwear and shoe inserts are all catering their marketing and product development to Raynaud's patients, Wunderman said.

That's no small consolation.

Though some drugs are available to treat severe cases, the front line of care for most Raynaud's patients is to prevent episodes by bundling up.

Wunderman said her doctor told her that minimizing the episodes is critical.

"The more you allow yourself to be exposed, the more often you may have attacks and when they come, they may be more serious and sustained," Wunderman said. "The good news is that the reverse is also true. ... You can yourself, to some degree, control it. It won't go away, but the attacks may be less frequent, and when you have attacks they may be less severe."



Retired public school Principal Doug Wilson, 57, of Topsfield found that he can control his Raynaud's episodes by running his hands under warm water.

"My worst time is when I get out of bed in the morning," Wilson said. "My hands are cold."

Usually his hot shower warms them up again.

Wilson is among the minority of Raynaud's patients who have cold hands as a symptom of a more serious disease, in his case a potentially fatal autoimmune disease called scleroderma. Considering all the medical problems he has faced related to scleroderma, Wilson said, he is glad that his case of Raynaud's is not as debilitating as it could be.

"When (my hands) get cold they're not painful, but they're awful unsightly," he said. "People would look at you and say, 'He has two fingers that are purple, one that is white and the rest pink.'"

To help keep his episodes under control, Wilson often wears a pair of lightweight gloves that have ceramic embedded in them in order to preserve heat, and in the winter, he wears these under a heavier pair of gloves. He avoids reaching into the refrigerator or freezer without gloves or holding drinks with ice cubes in them. He also wears layers of shirts to keep the core of his body warm.

It has become routine, he said, but there are still occasional embarrassing moments, like when he wears gloves in the supermarket.

"You go to pay for something and you have gloves on and it's September," Wilson said.

He also has to wear gloves occasionally in the summer while mowing the lawn.

"For some reason, maybe the wind is blowing or something, it'll be August and I'll have my gloves on," he said.

It wouldn't be a big deal, he said, except that most people have never heard of Raynaud's phenomenon so it takes a lot of explaining.

Wunderman said she has encountered the same problem. That's one of the reasons the Raynaud's Association created wallet-size information cards that explain Raynaud's in two paragraphs.

"Where I'd love to see this go is for there to be a significant increase in awareness of Raynaud's in the general public, and that people would be more knowledgeable about how to cope," she said.

Duffy said she has been living with Raynaud's episodes for about 30 years, but said she doesn't have any specific strategies other than trying to avoid cold weather. That's difficult, she said, because her hands can turn purple in 65-degree weather if it's damp and raw.



"Just when it happens I deal with it," she said. "I don't pay a whole lot of attention to it. I've had it so long that I just kind of go with it."

More about Raynaud's phenomenon

* Raynaud's phenomenon is an exaggerated response to the cold.

* The body restricts blood flow to the fingers, toes and other extremities in an attempt to preserve core body temperature. The extremities may turn white from the lack of blood, then blue from lack of oxygen and finally red as blood rushes back.

* Episodes can be triggered by cold weather and also by stress, smoking, and certain medications that restrict blood vessels.

* Raynaud's is more common in women than men.

* In most cases, Raynaud's is not associated with an underlying disease. It may be so mild that it is simply an annoyance and the person never seeks medical treatment. This form typically develops between ages 15 and 25.

* In some patients, however, Raynaud's phenomenon is a symptom of a more serious autoimmune disorder such as scleroderma or lupus. It often doesn't develop as a symptom of such diseases until after age 35 or 40.

Source: National Institute of Arthritis and Musculoskeletal and Skin Diseases

Quiz: Is it Raynaud's or just poor circulation?

* Does cold weather or stress cause your hands or feet to feel inexplicably cold or numb?

* Do your fingers or toes turn pale or white?

* Do they take on a bluish hue?

* Do they feel numb or painful?

* Do they turn red and throb or tingle as blood returns?

* Do the attacks occur weekly or even daily? (Attacks typically last 15 minutes, but they can last less than one minute or up to several hours).

If you answered yes to many of these questions, check with a doctor about the possibility you have Raynaud's phenomenon. Most cases are mild, but in some circumstances, Raynaud's can be a sign of a more serious disease. Even if it's not, serious cases of Raynaud's can lead to sores or death of body tissue if not controlled.

Source: National Heart, Lung and Blood Institute

Products that work



A patient group called the Raynaud's Association has been informally testing products to warm hands and feet. Here are some of their favorite picks, courtesy of founder Lynn Wunderman and the association's newsletters.

* Heated Fleece Jacket by Adventure Action Gear ($179) - Batteries in the pocket power heating elements in the fleece.

* Toasty Feet by PolarWrap ($12.95) - Insulating shoe insoles.

* USB-heated gloves by Perpetual Kid ($22.99) - For warming hands while typing. These are mittens that open into fingerless gloves and are heated by a cord that plugs into the USB port in your computer.

* Heat packs by multiple companies ($1.50 or less per pair) - Little pouches used by skiers that create heat through a chemical reaction.

* ProNeema Skin Cream ($12.95) - Developed for diabetics, this cream contains arginine, which increases circulation to the hands and feet.

* HeatBands ($38 for 60) - These wrap discreetly around the wrist to generate heat.

* Wristies ($14.50) - Fingerless gloves with cuffs that extend up the forearm.

* Warm-Me-Ups ($19.99 for hands, $27.99 for feet) - Microwaveable warming mitts, covered in faux fur.
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