Restless Leg Syndrome is the most common disorder that you’ve never heard of. It robs people of sleep, disrupts their family life and prevents them from sitting through a movie or concert. At least 12 million Americans–about the same number who have diabetes and five times the number who have Parkinson’s disease–suffer from this neurologic disorder. But it’s still relatively unknown even to the average medical doctor.
Although there is a set pattern of symptoms and the diagnosis is fairly straightforward, most people with RLS have lived with it for years, even decades, before finding a doctor who can put a label on their problem. By the time that happens, many are so sleep deprived and so miserable that they feel like they’re losing their minds.
Dorothy Kingsland describes herself as a “human gerbil” before she began the newest medication for RLS. “I have a treadmill in the bedroom, and many nights at 2 or 3 a.m. I’d be walking on it,” she says. “I’d put a pillow on the bars and rest my head and shoulders on it, but I had to keep my legs moving. There was one night when I never went to sleep at all.”
When she first sought help for the weird sensations in her legs and her need to walk at night to relieve them, she was told she had a vitamin deficiency. Then she was referred to an orthopedic surgeon. Finally, she saw a neurologist who identified the syndrome.
“While I was describing the sensations in my legs and my inability to go to sleep, the doctor kept nodding her head and smiling,” says Kingsland. “I’d finally found someone who knew what I was talking about, who didn’t think I was crazy.” Kingsland, who is 78, estimates she’s had RLS for 25 to 30 years. She was diagnosed about 13 years ago.
RLS patients all tell a similar story. They have odd feelings in their legs that are difficult to describe. Some say they have the “creepy crawlies” or an electrical feeling; for others it feels more like pressure building up.
Jerry Powers describes the sensation this way: “It’s like a tic that you get in your eyelid, like there’s a little worm in it, but it’s in your legs.”
Bob Zaruba says it’s an indescribable irritation. “It’s a nervous feeling,” he says. “You’re anxious, you feel agitated, and you’ve got to get up.”
RLS sensations are rarely painful, and perhaps that’s why they are often dismissed by doctors, who may attribute them to stress, poor circulation, arthritis, or even to old age. “A lot of people say to me, `If it doesn’t hurt, what’s the problem?'” says Kingsland. “But I’d take pain over this any day. You could take a pain pill and it would go away. With RLS, once you’re in a full-blown attack, it’s so powerful, even a football player would be on his hands and knees.”
But it’s not the creepy feelings by themselves but the compulsion to get up and move around to relieve them that is so distressing. People with the disorder are restless or fidgety; they can’t sit still for any length of time. Jerry Powers finds it difficult to read a book.
Because RLS symptoms usually begin or worsen in the evening and nighttime hours, people who have the disorder can’t fall asleep. As soon as they lie down, they have to jump out of bed. “You walk and walk or ride an exercise bike all night long until, out of sheer exhaustion, you fall asleep for a short time,” explains Nancy Yang, who has had RLS for about 15 years. “Then you get up and struggle through the day.”
Before she found help (the result of seeing an Ann Landers column on RLS), Yang says she was so sleep-deprived that she couldn’t drive more than a couple miles without stopping to take a nap. Now 53, Yang says she has no recollection of her children’s junior high school years because she was so exhausted. “You get so depressed, you really wish you could die when it’s so severe,” she says.
“These are some of the most sleep-deprived people we see,” says Dr. Daniel Picchietti, medical director of the Carle Regional Sleep Disorders Center in Urbana.
Although RLS is vastly underdiagnosed, it is actually highly treatable, and treatments for it have improved greatly in the last 10 years.
There is no laboratory test for RLS, however.
“It remains a clinical diagnosis based on the presenting complaints,” says Dr. Tanya Simuni, a movement disorders neurologist and director of the Parkinson’s Disease and Movement Disorders Clinic at Northwestern University Medical School. In fact, an international RLS study group in 1995 established four official standards by which RLS can be diagnosed.
A thorough medical evaluation, including a detailed medical history, will determine whether the patient has primary RLS–RLS with no known cause–or secondary RLS, in which the symptoms are the result of some other underlying medical condition.
Causes for secondary RLS include illnesses that involve the peripheral nerves, such as diabetes and thyroid disease; other neurological problems such as multiple sclerosis, cerebrovascular disease, or narrowing of the cervical spine; kidney disease; and iron deficiency anemia, says Dr. Wayne Rubinstein, co-director of the Sleep Disorders Center at Lutheran General Hospital.
In addition, 15 to 20 percent of women in their third trimester of pregnancy develop secondary RLS. Their symptoms usually disappear after delivery.
Most RLS patients, however, have primary RLS, for which there is no known cause. But in about 50 percent of primary RLS cases, there is a family history of the disorder, leading doctors to believe that there is a genetic link, especially for those who started having symptoms before age 50.
RLS is a progressive condition, getting worse and increasing in frequency with age. In the more severe cases, the arms may also be involved. People with RLS often have had mild and intermittent symptoms for many years, symptoms that they, like their doctors, shrug off until they become intolerable.
For those with mild primary RLS, information about the disorder and precautions to take may be all that’s needed. Precautions include avoiding sleep deprivation, alcohol and caffeine–all of which seem to exacerbate RLS–and getting regular moderate exercise.
For those with moderate to severe RLS, medication can be used to control the symptoms.
Just as there is great variability in the severity and chronicity of the RLS symptoms, there is also tremendous variability in each individual’s response to medications. A medication that works for a while may lose its effectiveness, and patients may need to switch or use a combination of drugs–what Powers refers to as his “cocktail.”
RLS was first described 300 years ago, and the term restless legs was coined in 1945. But it’s only recently that research has been funded to look into the incidence, the cause and the treatment of RLS. Still, specialists are optimistic.
“My hope is that within this century we will find a cure,” says Picchietti. “The treatments in the next 10 years will get better.” Convincing some doctors that the problem exists is a hurdle for many sufferers.
RELATED DISORDER AFFECTS MANY RLS SUFFERERS
Having Restless Leg Syndrome is bad enough, but more than 80 percent of RLS patients also suffer from Periodic Limb Movement Disorder (PLMD), a related condition that causes involuntary jerky movements during sleep. These movements can occur hundreds of times a night, causing brief arousals although usually not complete awakening. Although RLS prevents sufferers from falling asleep, PLMD affects them during sleep, keeping them from sleeping soundly enough to be refreshed.
“RLS affects the quantity of sleep while PLMD affects the quality of sleep,” explains Dr. Daniel Picchietti, medical director of the Carle Regional Sleep Disorders Center in Urbana. “It’s a double whammy.”
Most have no idea they have PLMD. They complain of vague symptoms like irritability, feeling tired the next day even after what should be an adequate amount of sleep, or “losing their zest.” Those were just the symptoms that led Jerry Powers to a sleep disorder center 10 years ago, when he was 50. He was diagnosed with PLMD after spending the night in the lab for a sleep study. “They took a videotape, and I saw that my legs were moving all night long,” Powers says.
Bob Zaruba’s PLMD was also diagnosed in a sleep lab. They found that his legs were jerking every 25 to 30 seconds. “I was getting up as many as 15 to 20 times a night,” Zaruba says.
Although they may report getting kicked at night, bed partners often are not aware of the extent of the problem. “I’m a very sound sleeper, and I did not know he was moving his legs,” says Barbara Marian, Jerry Powers’ wife. “We’ve been married 37 years, and I am amazed when I’m awake and watch his legs when he’s sleeping. I can’t believe what’s happening.”
Fortunately, the medications used to treat RLS are the same ones used to treat PLMD.
— L.Y.
LINK TO ADHD IS POSSIBLE
If your child has been diagnosed with Attention Deficit Hyperactivity Disorder), you may want to have him evaluated for Restless Leg Syndrome and Periodic Limb Movement Disorder. This is especially important if there is a family history of RLS or PLMD.
PLMD is common among children with ADHD and could contribute to their symptoms, says Dr. Daniel Picchietti, a pediatric neurologist who has studied and treated children with RLS and PLMD.
And some children are being mislabeled as having ADHD when they’re really suffering from RLS.
“Some of these kids are restless not because of ADHD,” says Dr. Tanya Simuni, a movement disorders neurologist at Northwestern University. “If they can’t sit still in class, the question should be asked, `What makes you jump up?’ These children should be observed and then evaluated.”
Forty percent of people with RLS had symptoms before age 20; 15 percent had symptoms before age 10 and 25 percent had symptoms between age 10 and 20, says Picchietti.
Children with mild RLS may have severe PLMD. Children are less likely to meet the international criteria for an RLS diagnosis. However, even if they don’t, one of their parents often does.
If your child has the following symptoms, they may have RLS or PLMD:
– Trouble falling asleep.
– Trouble staying asleep.
– Signs of sleep deprivation, such as irritability, and restlessness during the day or at night.
— Leah Yarrow
WHERE TO GO FOR HELP
If you suspect you have RLS, have yourself evaluated. If your physician is not knowledgeable, you can get materials from the Restless Leg Syndrome Foundation. Or consider seeing a neurologist or a sleep disorders or movement disorders specialist.
– Restless Legs Syndrome Foundation
819 2nd St. SW
Rochester, MN 55902
www.rls.org
To receive a complimentary copy of the brochure Living with Restless Legs, call toll-free at 877-463-6757.
– The National Sleep Foundation
1522 K St. NW
Suite 510
Washington, DC 20005
202-347-3472
– WE MOVE
(Worldwide Education and Awareness for Movement Disorders)
Mt. Sinai Medical Center
One Gustave L. Levy Place
Box 1052
New York, NY 10029
800-437-6682
www.wemove.org
– National Center on Sleep Disorders Research
2 Rockledge Drive, MSC 7920
Suite 7024
6701 Rockledge Drive
Bethesda, MD 28092-7920
301-435-0199
– Northern Illinois Restless Leg Support Group
Nancy Yang, leader
www.nancyy2@aol.com
847-244-0180
This support group serves northeastern Illinois. It meets three times a year at Northwest Community Hospital in Arlington Heights. Call or e-mail for information about upcoming meeting or for other assistance.
Some sleep disorder centers in the Chicago area:
– The University of Chicago Hospitals
Sleep Disorders Center
5841 S. Maryland MC2091
Chicago, IL 60637
773-702-1782
– Rush-Presbyterian-St. Luke’s Medical Center
Sleep Disorder Service and Research Center
1653 W. Congress Parkway
Chicago, IL 60612
312-942-5440
– Northwestern Memorial Hospital
Sleep Disorders Center
201 E. Huron
Galter 7th Floor
Chicago, IL 60611
312-926-8120
– Lutheran General Hospital
Sleep Disorders Center
1775 Dempster St.
Parkside Center, Suite B06
Park Ridge, IL 60068
– Evanston Hospital
Sleep Disorders Center
2650 Ridge Avenue
Evanston, IL 60201
847-570-2567
– University of Illinois at Chicago
Center for Sleep and Ventilatory Disorders
1740 W. Taylor St.
Room 536E M/C 722
Chicago, IL 60612
312-996-7708
