- The Washington Times - Monday, November 6, 2006

The only thing worse than suffering, for many people, is feeling as if they are suffering alone. That is exactly how many victims of restless legs syndrome (RLS) feel.

Dee Johnson, 39, of Culpeper, Va., has struggled with RLS since the birth of her third baby.

“It’s unlike any feeling you can have, and it’s miserable because it’s 24/7,” Ms. Johnson says.

RLS is a debilitating neurological disorder that causes often painful sensations in the limbs, ranging from mild to severe, especially at night and during periods of inactivity. More than just an inconvenience, these sensations can lead to extreme sleep deprivation, leaving the body vulnerable to illness. There is no cure.

Ms. Johnson believes her grandmother and mother had legs problems similar to hers but were never diagnosed. Most sufferers find ways to cope.

“I use one of those hand-held massage things,” Ms. Johnson says, “If eating grass helped, I’d be eating grass.”

Ms. Johnson’s doctor is still trying to find the right combination of medicine and lifestyle changes to treat her symptoms.

Other than a cure, the one thing Ms. Johnson would like most would be for people to take RLS seriously.

“You mention the word ‘RLS,’ and they look at you like, ‘Oh, well, you’re not gonna die from it,’ but it affects your quality of life,” Ms. Johnson says. “It’s just so hard to describe how bad it feels.”

RLS is more common in adults than children and in women than men, but it can affect anyone. Some researchers estimate 12 million Americans are affected by RLS. However, the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health in Bethesda, acknowledges the numbers probably are much higher because of underdiagnosis and misdiagnosis.

Physicians have been known to attribute the symptoms of RLS to nervousness, insomnia, stress, arthritis, muscle cramps or aging.

“If they do know about it, they either don’t believe that RLS even exists, or they don’t think it’s important enough to treat you,” says Kathy Page of Missouri.

Mrs. Page says she probably had RLS most of her life, but her doctor called it “growing pains” at first. Later, her RLS was mistaken for “everything from lack of calcium to multiple sclerosis.”

Mrs. Page went to three general practitioners and two neurologists before she found someone who knew what her condition was and was willing to treat it.

Dr. Merrill M. Mitler, a sleep specialist at NINDS, says he is disgusted by the lack of credibility RLS receives from the general population.

“Some news reports have picked up on restless legs as an example of disease mongering,” he says. “This is a real sensory disorder … It’s not imaginary.”

RLS is not only a real disorder, it has been around for hundreds of years. In 1672, Sir Thomas Willis, an English physician, described what modern physicians believe was RLS. Centuries later, professor Karl-Axel Ekbom, head of the department of neurology at Uppsala University Hospital in Sweden, described the disease. He identified it as “restless legs” in 1945.

Though RLS is a common disorder that has been around for centuries, little is known about its cause or how to treat it.

“Until you know exactly what causes it, it’s hard to find treatments that exactly target it,” says Georgianna Bell, executive director at the Restless Leg Syndrome Foundation (RLSF) in Rochester, Minn.

RLSF is a leader in research and raising awareness of RLS. To help patients find the support and treatment they need, the RLSF Web site (www.rls.org) offers more than 100 support groups in the United States and Canada as well as a directory of health care providers.

Dr. Daniel Picchietti, one of the doctors on the advisory board for RLSF, is among the specialists listed in that directory. He practices at the Carle Clinic Association in Urbana, Ill.

“You’d think with so many people affected by it, people wouldn’t feel so out there alone and suffering, but they are,” he says.

Dr. Picchietti is a neurologist, pediatrician and sleep disorders specialist whose wife and three children all have RLS.

Though RLS appears to be related to factors such as dopamine levels in the brain and iron in the body, doctors also have linked the disorder to three specific genes.

Among Dr. Picchietti’s patients is 13-year-old Texan Ali Dzienkowski, who was diagnosed with RLS when she was 11.

“It was hard for me at first because nobody knew what I had,” Ali says, “Sometimes it was hard for me to do things with friends because I wasn’t getting a good night’s sleep and was too tired to participate.”

Ali’s mother, Karla Dzienkowski, a registered nurse, could tell that something was wrong, especially when her daughter, an A student, began bringing home poor grades.

After much persistence, Ali finally learned what was wrong and began the process of finding treatment.

Doctors recommend lifestyle changes such as eliminating caffeine, increasing iron intake and exercising as well as taking various medicines to address the symptoms of RLS, Dr. Picchietti says. Unfortunately, there is only one Food and Drug Administration-approved drug for adults, and none for children.

Dr. Daniel Lewin, a sleep specialist at Children’s National Medical Center in Northwest, says RLS probably accounts for 20 percent or more of the sleep disorders in children. He also says he has encountered a number of children who were diagnosed with attention deficit hyperactivity disorder who actually suffered from RLS.

He recommends raising awareness of RLS among pediatricians and teachers.

“Often the pediatricians are surprised,” Dr. Lewin says. “Many are not aware that this is a condition that does occur in children.”

Though there is no cure, improved treatments can greatly increase one’s quality of life, says Texan Lynne Kaiser, 42, who has struggled with RLS her whole life.

“People don’t have to suffer,” Mrs. Kaiser says, “They should know that.”

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