By Barbara Marshall, Palm Beach Post Staff Writer
Growing up in West Palm Beach in the 1930s and ’40s, Shirley Percy was accustomed to her mother getting up and moving around when “that feeling” struck.
“I didn’t know it had a name. We always called it the ‘heebie-jeebies,’ the ‘screaming meemies’ or the ‘jimjams,’” says Percy, age 77, who says she’s had twitching legs her whole life, just like her mother. “You can’t get comfortable. Sometimes I wouldn’t go to sleep until 4 a.m.”
Hoping to ease the uncontrollable urge to move her legs, she tried her mother’s remedies.
“I’ve tried everything all my life, running hot water on my legs, getting up and walking, putting ice on my feet,” says Percy, who now lives in the Acreage. “None of it worked.”
Then she happened to mention her dancing legs to neurologist Irvine Mason of Jupiter, during an appointment for another medical issue. Mason told her she had restless legs syndrome (RLS) and gave her a prescription for Requip, a drug that quells the itchy, twitchy, compulsive desire to move that characterizes RLS.
Tingling. Cramping. Gnawing. Aching. Electrically charged. Those are just a few of the descriptions RLS patients use to describe the thief that steals their sleep.
For most, the only relief is to move. They walk, ride a bike, jiggle, shimmy and shake – often in the middle of the night – to try to drive away the heebie-jeebies.
“You need a big bed,” said Gordon Barnes, whose girlfriend, Kathryn Brassington of Tequesta, has RLS. “She bounces around a lot at night trying to sleep.”
Brassington describes a creepy sensation in her legs that compels her to move them when she tries to sleep or sits down to watch TV in the evening. Lately, she’s had bouts in movie theaters and during long flights.
“At first, my legs just twitched a little bit . Now I look like one of the Rockettes,” said Brassington, 65, who spends many nights pacing the floor trying to stop the tingling. “You’re just wiped out the next day.”
RLS isn’t a life-threatening disease, but sufferers often feel dead-tired from years, sometimes decades, of lost sleep. It affects about 12 million Americans and often runs in families. According to the RLS Foundation, RLS in children is closely associated with inattention and hyperactivity, creating a need to get up and move frequently.
“It disrupts a patient’s whole life,” said Mason, who sees one to two RLS patients a week at his clinic, the Sleep Disorder Center of the Palm Beaches. “They wake up fatigued every single day of their life, they drag through their day, they fall asleep at the wheel.”
Yet according to a 2004 study, primary care physicians often fail to diagnose what is classified as a neurological disorder.
Mason says RLS, which occurs when a patient is awake, is usually accompanied by an associated condition that crops up when a patient is asleep, called periodic limb movement disorder. Limb movement disorder sufferers kick and squirm in their sleep, waking their bed partners and sometimes leaving them bruised. Most doctors lump the two conditions together and label it RLS.
“It destroys marriages,” said Mason, who conducts an overnight sleep survey of patients to diagnose limb movement disorder .
RLS can appear at any age and frequently becomes worse with each passing decade, say doctors. It often pops up in pregnant women, only to disappear at delivery.
Although more women than men get RLS, when the disease appears after age 50, patients are more likely to be male, said Palm Beach Gardens neurologist Sylvia Zuniga-Barboni.
“RLS can have such odd, different symptoms,” she said. “Sometimes they have pain, sometimes patients think they’re just restless or anxious. They can become depressed. Sometimes people come in and they haven’t been sleeping in the same bed as their spouses for years.”
RLS appears to be caused by a shortage of dopamine, a mood and movement regulator, in the brain. Neurologists often prescribe drugs such as Requip or the newer Mirapex, to increase the brain’s supply of dopamine.
In some, RLS symptoms seem to be caused by a deficiency in iron, magnesium or folic acid, a B vitamin, say neurologists. If blood tests reveal low levels of either, the problem can be easily remedied with supplements. Mason says he often suggests RLS patients take a B-complex supplement with folic acid.
Stress and anxiety can make symptoms worse. So can alcohol and caffeine.
After recently drinking caffeine-laced soft drinks, Brassington said “the last four nights have been terrible.”
Warm baths, gentle stretching exercises and massage may help. Zuniga-Barboni said some of her patients ride an exercise bike for a few minutes to calm their legs before bed.
“You don’t like to complain because so many people have worse things,” said Brassington, “but it’s very disrupting.”
