Even if you have RLS, you may not be aware that it’s also known as “Ekbom disease” or “Willis-Ekbom disease.” It was identified and described by Professor KarlAxel Ekbom in 1945, but he wasn’t the first. It was initially documented 300 years earlier in England by famous English physician Thomas Willis, who also identified diabetes, meningitis, and typhoid fever. As with Alzheimer’s, which used to be called “senility” and was considered part of the normal aging process, there was very little awareness of RLS in the medical community until fairly recently.
Many patients will agree with Willis’ description of RLS: “Leaping and contractions of the tendons and so great a restlessness and tossing of the members ensure that the diseased are no more able to sleep than if they were in the place of the greatest torture.” Ironically, Willis thought the cure for RLS was bloodletting, which was used for everything from rashes to cancer in those times. However, today we know that low iron levels contribute to RLS and bloodletting was the worst possible treatment.
Before RLS was recognized as an actual disease, people who had it gave it all kinds of names. For instance, one RLS sufferer, Virginia resident Carol Zepko, 68, started getting restless legs in high school. Her mother also had it. They called it “the jitters” and, although it was unpleasant and sometimes debilitating, they coped with it stoically, assuming they had no choice. “Back then a doctor would have said, ‘You have what?’ When I was a kid, no one knew anything about it,” Zepko says.
A study in 1996 showed that after patients sought medical help, diagnosis took 10 years or more. An international study in 2004 found that only 8 percent of patients were diagnosed properly.
This situation is changing rapidly, however. RLS is becoming a more common diagnosis today, which has helped patients get appropriate treatment. “The reason for RLS’s higher profile today is probably because people are living longer these days and it’s much more common in elderly patients. Doctors are seeing a lot more of it,” speculates Dr. Michael Sellman, Chief of Neurology at Mercy Medical Center in Baltimore.
These days when doctors still fail to diagnose RLS, Sellman thinks it may be because the medical profession is overly reliant on technology. “Physicians rely on sophisticated testing to make diagnoses. The classic diagnosis of RLS is made in the doctor’s office when the patient verbalizes his symptoms. The doctor only does testing to prove that it isn’t something else.”
Part of the problem is that doctors aren’t trained in sleep disorders. “They fail to diagnose sleep apnea as well as RLS,” says Dr. Jacob Teitlebaum, author of From Fatigued to Fantastic. “Also, there are many under-diagnosed conditions that can cause or contribute to RLS, including fibromyalgia and underactive thyroid.”
Twenty years ago, Virginia Cantorella, 73, of Greenville, New York , tried to find out what was causing her problems. “I was up all night, I’d try to go to bed but my legs were jumping so that I couldn’t sleep. I’d get up and draw and that would stop it, but as soon as I got back in bed it started again.” Her primary care doctor eventually sent her to a neurologist who made the diagnosis. She’s now doing very well on the Parkinson’s drug Mirapex. “I also have multiple sclerosis, which I’ve had for 40 years,” Cantorella says, “but before I was diagnosed with RLS I found the restless legs more troublesome than MS. Not being able to sleep is the worst torture.”