FARGO - Jane Williams said it's almost impossible to explain what restless legs syndrome feels like to people who don't have it.
"It's just this urge to move your legs," she said. "It's a feeling inside your legs like you just have to move them."
But it isn't hard to describe what it did to her quality of life for decades. Williams said sitting still was a challenge - whether she was on an airplane, sitting through long meetings or just trying to get a good night's sleep despite the urge to move.
Shaun Christenson, a neurologist at Essentia Health in Fargo, said there's still confusion about the clinically diagnosed condition that some think isn't real. Even after decades of research, and plenty of theories, doctors still haven't pinpointed what causes these sensations.
But he said there's no doubt that this is a real condition that causes real problems, especially for the small percentage of sufferers he sees who don't respond to treatment. He said those with RLS often change their lives, and some of the most extreme sufferers don't take long drives or fly because of it.
"Not only that, but they have severe insomnia related to the restless legs, and they're talking to you and they're trying to stay awake because their restless legs is so terrible that they've been so sleep deprived," he said.
Williams, now 64, said she was in her 30s when she first started to notice the symptoms of RLS. She thought it was trouble sleeping, but after years of restless nights, she started going to doctors to figure out what was happening.
But she said her own research 20 years ago guided her early treatment attempts more than a doctor's advice because so little was known about the condition. She read a suggestion to take an iron supplement - something Christenson said remains a common treatment because some RLS sufferers have lower than normal iron levels that seem to make the symptoms worse.
That didn't work for Williams, so she continued looking for options. Working with her doctor, she tried prescription medications like Lyrica, Klonopin and several others, but none seemed to help.
She figures out tricks over the years that gave her some relief. Like many with RLS, caffeine, chocolate and other sweets and stimulants can make her symptoms flare up, so she stops drinking coffee early in the day and avoids sweets after lunch.
Williams also exercises regularly - something Christenson said can help - but she makes sure to work out in the morning, otherwise the urge to move can get stronger in the evenings.
She said the symptoms have become worse over the years. That's common with this condition, Christenson said, and for some sufferers, the urge to move can eventually spread to their arms and upper body.
While serving as Concordia College's financial aid director for 29 years, a role she retired from in June, she said she learned to sit in the back of the room during meetings so she could stand up or walk around. She also avoided sitting at her desk whenever possible, opting to pull her own files and walk around whenever she had a chance.
"I never wore a pedometer at work, but I always put a lot of miles on," she said. "If I had a job where I had to just sit, I don't think that would have worked at all."
But Williams did eventually find help about five years ago when she was prescribed Requip, a dopamine agonist most often used to treat Parkinson's disease. She has since increased her dosage three times to keep up with the symptoms, and she takes an extra pill before a dental appointment or massage to remain comfortable when she has to sit still.
Even with the medication, she said she still has an occasional bad night and often wonders what she would do if the medication stopped working or was taken off the market.
"Sometimes, even with the Requip, I am very, very uncomfortable at night, and it reminds me of how I used to be all the time," she said. "It makes for a very long night."
A COMMON AILMENT
Christenson said researchers still have a lot to learn about RLS, but the medical condition is much more understood now than a few decades ago.
It's estimated to affect 5 percent to 10 percent of people, he said, and often runs in families. Williams said after she was diagnosed, she realized her mother and several aunts suffered from it, and her sister and one of her sons also have it.
Christenson said it tends to be more common as people get older. But it can strike at any age, he said, even if it often goes undiagnosed in kids because their restlessness and leg twitches could be mistaken for attention deficit hyperactivity disorder.
It can also be a temporary ailment in some cases. As many as 30 percent of women experience RLS during pregnancy, and most of them don't have the symptoms after they have their babies.
The condition also gets worse in the evenings and at night, or during times when people aren't active, he said.
Williams said RLS was never quite painful, but rather "very uncomfortable." Even when she moved her legs, it didn't give her any relief from the urge to move, she said.
But the worst part was what that constant feeling did to her sleep, she said.
"It's a matter of just not being able to sleep, and not only not being able to sleep, but waking up exhausted from being restless all night," she said. "All you can really do is get up and walk around."
Christenson said this has a health toll, often leading to stress, anxiety, depression and poor attention span. A lack of sleep can make the immune system less effective, putting those with RLS at a higher risk of other illnesses.
But he said it also can put stress on relationships and make for restless nights for significant others.
"As a sleep doctor, I'm hearing a lot about spouses kicking the other spouse out of the bedroom," he said. "More often it's because of snoring, but sometimes, too, because of these periodic limb movements or leg kicking at night because it's bugging the heck out of their spouse and they want them out of that bed."
Williams said there are times when RLS still disrupts her life. But for the most part, taking Requip has changed it from a "hardship" that severely affected her sleep to a minor inconvenience.
Christenson said more than 90 percent of sufferers respond to treatment, so it's often just a matter of trying the options until they find one that works.
"By far and away, we are able to treat it and manage it to where their symptoms are under control and barely noticeable," he said.
Researchers still haven't found the cause of restless legs syndrome, but there are several possible treatments that often help sufferers.
- Exercise, leg massages and stretching can minimize symptoms.
- Cutting back on nicotine, caffeine, sweets and other stimulants can help.
- Iron supplements can help some with RLS who have low iron levels.
- Dopamine agonists such as Requip or Mirapex, medications most often used to treat Parkinson's disease, are often effective.
- Other medications, such as benzodiazepines or narcotics like codeine or Ultram, also can help in severe cases but have more side effects.