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Night Crawlers

Bedtime Gave Her the Creeps -- Until Restless Legs Got Her Moving

By Liz Kelly
Special to The Washington Post
Tuesday, February 1, 2005; Page HE01

I awoke at 2 a.m. to the distinct sensation of worms crawling through my flesh. Muscle was being squeezed out of place, twisted from within. I had to move immediately. I kicked to shake the creatures out.

As I slowly gained consciousness, reason returned. The problem wasn't worms; it was some kind of indistinct spasm in my legs -- maybe the result of a day spent raking leaves, I figured. I flexed my toes, rubbed my calves and, eventually, fell back asleep.

_____From the Post_____
For RLS Patients, a Challenging Quest for Relief (The Washington Post, Feb 1, 2005)

Over the next few weeks, always when I was asleep, the writhing in my calves would return. Bedtime became a perverse nightscape where the more tired I was, the more likely I was to experience the wriggling sensations. I fought to ignore them, to keep my legs still, but the crawly feeling always won, not stopping until I stood up, massaged my legs and walked around a bit.

On the worst nights, which became more frequent, nothing helped. I'd end up reading at the dining room table, getting up every 15 minutes to walk, jealous of the sleeping dogs curled up on the couch. I'd doze off in a wooden chair at 4 or 5 a.m.

Whatever it was, it was starting to affect my waking hours, too. At work I felt like the undead -- pale, mumbling and confused, unable to make even basic decisions, lashing out unpredictably at others. I tried using heating pads, elevating my legs, soaking in hot baths and, at a low point, taking too much Robitussin.

My mother diagnosed a potassium deficiency and suggested I eat bananas. A friend mentioned lack of exercise. One night, over dinner, my boyfriend casually suggested the condition might be mental. I thought he was joking; then he repeated the line two hours later.

I knew I needed to call a doctor. But first I decided to see what I could learn on my own. I turned to Google -- enabler of the on-demand age. After several failed searches using multi-syllabic, clinical-sounding words absorbed during years spent on the couch watching "ER," I was ready to give up. Then, on an impulse, I typed in the words, "worms legs sensations." There it was in bold blue letters: "Restless legs syndrome" (RLS) -- "a neurological condition characterized by uncomfortable sensations in the legs that are usually worse at night."

Link after credible link -- from the National Institutes of Health to the National Sleep Foundation -- described exactly what I was experiencing, along with the apparently common descriptor of "worms crawling in muscles."

A Tough Diagnosis

Fellow RLS sufferers have described the feeling in a variety of ways: pins and needles, burning sensations, something boring through their legs, water trickling into their muscles and, in some cases, extreme pain. Periodic limb movement disorder (PLMD) also often accompanies RLS.

Yep, had that, too. My boyfriend called it "crazy legs." Unknown to me -- and years before the "worms" started waking me up -- I'd apparently been thrashing about at night, kicking anything, or anyone, in range. No wonder the cat didn't sleep with us anymore.

Not much is known about RLS beyond its being a neurological problem somehow tied to the actions of dopamine, a chemical messenger in the brain.

"We do not know the precise cause or underlying mechanism of RLS," said neurologist Helene Emsellem, director of the Center for Sleep and Wake Disorders in Chevy Chase. The condition may be hereditary, since multi-generational cases are often found.

A recent Johns Hopkins study estimated that 7 percent of the population of North America may have RLS. That's a huge chunk of people thrashing around in their beds -- more than 20 million -- and researchers are starting to see more interest in pinpointing causes and effective treatments. Some untreated RLS patients score as low on quality-of-life tests as people with other chronic illnesses like diabetes and congestive heart failure. That's no exaggeration, insists Richard Allen, neurologist and co-founder of the Johns Hopkins Center for Restless Legs Syndrome. Prolonged sleep deprivation, common with RLS, can lead to depression and even suicidal thinking, he said.

The unknowns about the disorder make diagnosis difficult. Only 1 percent of suspected cases are identified, said Allen. "Primary care physicians assume the symptoms are secondary to other problems -- like arthritis or back pain," Allen said. "So they're treated for those other conditions. But the RLS symptoms don't change."

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