From Boulder Daily Camera, Monday, June 4, 2007
By Aimee Heckel
CORRECTION (8/29/07): In this story, an opinion was incorrectly attributed to medical blogger Kevin Pho. Pho had blogged about the syndrome, but he was referring to another blog and the opinion stated in the Camera article was not his own.
When the lights go down, Jerry Gilland’s legs fire up.
It starts as an nagging impulse in his legs when they hit the bed. The urge builds into a maddening panic, too intense to ignore. Gilland says he must move his legs.
It’s like being trapped under water, he says. Even with the most powerful motivation to hold your breath — life or death — at some point, you consciously decide you cannot do it any longer. At some point, you drown.
“I’ve often speculated, what if someone held a gun to my head and said, ‘If you move your legs, you’re dead,'” Gilland says. “I would have to eventually. You just crack.”
Other people who suffer from Restless Legs Syndrome — an estimated 10 percent of Americans — liken it to bugs crawling under your skin, or gnawing, itching, pulling and creeping that appears in different degrees. Some women only experience it during pregnancy, or others just a few times in their lives.
Others, like Gilland, take prescription medicine to deal with daily episodes that otherwise interfere with their sleep and ability to function.
Neurologist Karl Ekbom identified the disorder in the 1940s, and in 2005, the U.S. Food and Drug Administration approved a tablet specifically for Restless Legs Syndrome: Requip (or Ropinirole). Some physicians prescribe the same pills as for Parkinson’s disease.
Yet doctors still can’t figure out exactly what causes the restless legs.
And that leads skeptics to wonder if it really exists.
Medical blogger Kevin Pho calls Restless Legs Syndrome “bogus” on his popular Web site (www.kevinmd.com/blog), saying the label was created to sell drugs to people who don’t need them.
A recent essay in the New York Times, by H. Gilbert Welch, Lisa Schwartz and Steven Woloshin, called restless legs little more than a regular, unwanted physical sensation. The article warned that classifying normal nuisances as “symptoms of a disease” can lead to the dangerous medicalization of everyday life.
When they’re your legs
That’s why 74-year-old Gilland doesn’t like talking to non-sufferers about it.
“They can’t imagine it,” Gilland says. “If you’d never had a toothache, it’s hard to explain a toothache.”
But the “creepy-crawlies” are not a simple discomfort, he says. They lead him to spend hours wearing a path in the carpet walking in circles through his Boulder house. The activity seems to help. Or maybe it just wears him down until his body collapses into exhaustion, he says.
“It’s miserable,” Gilland says.
Like many other people report, his restless legs have worsened with age. Gilland says he first remembers it when he was a boy. He says adults scolded him because he wouldn’t sit still.
He couldn’t, he says.
He says he spent 30 years thinking he was a “naughty little boy” until he heard about the syndrome.
Gilland says it seems worse when he eats spicy food. For a month now, he’s been logging his food and the severity of his symptoms on a spreadsheet. But no correlations have popped up.
The National Institute of Neurological Disorders and Stroke calls Restless Legs Syndrome a neurological disorder that might be linked to iron deficiency, the use of certain medications, caffeine, alcohol or kidney problems.
Cheryl Pratt, 69, of Lafayette, believes the condition runs in the family. Her mother had it, and called it “jumpy legs.” Now Pratt’s daughter has it.
Pratt says her first memory of restless legs was when she was a child sitting around a camp fire at a church camp in Maine. She gets it four to five times a week now, typically when she is sitting in a car, airplane or lying in bed.
A long walk in the late afternoon seems to help, she says. The Requip pills do, too, but she says they hurt her stomach.
Frances Haertling, of Louisville, has a lesser degree of restless legs. She calls the syndrome a “minor annoyance” that started when she was pregnant.
Haertling, 45, takes Clonazepam pills, which are also used to treat epilepsy and anxiety. Once Haertling flew on an airplane without the pills, and, out of curiosity, spent the flight observing her legs. The feeling lasted more than an hour, coming and going every five or 10 seconds in bursts like “ants crawling up and down the back of your legs on the inside of your legs — inside the skin,” she says.
She says that description puzzles non-suffers. But surprisingly often, people relate, she says.
“One time a doctor told me it’s called the most common disorder you’ve never heard of,” Haertling says.
Last night Boulder’s Gilland forgot to take his medicine with dinner.
He says he knew as soon as his feet his the bed.
“I use the word ‘pain.’ Not like a toothache or a bee sting. This is a different pain,” he says. “It fails any traditional definition of pain.”
Chris La Rosa prefers to treat the syndrome without medicine. La Rosa is an acupuncturist in Boulder who treats Restless Legs Syndrome with Chinese medicine: strategically placed needles and a plant substance, “moxa,” which he burns on the body or on the needles.
“This is a better solution than drugs, in that we’re treating someone in their entirety, and I think we’re getting that underlying cause more effectively,” La Rosa says.
He thinks the root of the problem is a deficiency in the kidney or liver “yin.”
Douglas Frank, another Boulder acupuncturist who treats restless legs, says the liver yin helps nourish the tendons and ligaments, and when that’s lacking, it causes shaking or spasms.
Chinese medicine practitioners compare health problems to the environment. Itching and a fever are like a fire. Swelling and phlegm are considered “damp” conditions.
Restless legs is like the “wind,” Frank says.
“Just like in nature, you can protect yourself from cold: more clothes. The heat: cool down,” Frank says. “But when there are sustained winds, you can’t go outside. Even being in your house is hard. That’s the quality of the experience that takes place with RLS.”
Like the wind, he says restless legs are agitating. You hear people who lose their minds living on the prairie in wind that lasts for days, he says.
“When people say this doesn’t even exist, people can feel very crazy: ‘I’ve got this thing, yet people are saying it doesn’t exist,'” Frank says. “They almost feel blamed or like they have some psychiatric problem, having something there’s controversy around. … Like the wind, it’s crazy-making.”
Contact Camera Staff Writer Aimee Heckel at 303-473-1359 or firstname.lastname@example.org.