As RLS affects each sufferer in different ways, Healthline talked with three RLS patients to get a picture of how this disorder affects their day-to-day lives and how they deal with it. Wendy Murray, Linda Leekley, and Karey Goebel all have experienced some of the typical problems RLS patients suffer, including difficulty getting diagnosed and difficulty finding appropriate treatment. However, taking different approaches to the disease, they have all learned to cope effectively. Their stories paint a collective portrait of RLS today.
 
Wendy Murray

Retired attorney and New Jersey resident Wendy Murray first started experiencing RLS symptoms in the mid-1990s. At first, they flared up only once or twice a year when she was experiencing stress. She relied on over-the-counter painkillers to help relieve the condition, but during an episode she was often unable to sleep or participate in everyday activities until she could get the symptoms to subside. “I basically treated myself in the beginning by buying a massage chair,” she says. “I asked my various doctors what the uncomfortable feeling could be, but no one had any clue what I was talking about.”
 
Eventually, her RLS worsened, and she sought treatment for what was then a relatively unknown condition. After years of suffering and multiple misdiagnoses, a neurologist was finally able to make a definitive assessment of RLS. Now, with the help of medication, Murray is able to control her symptoms and advises anyone who thinks they might be suffering from RLS to seek help from their doctor or neurologist.
 
Have you reached a point in your treatment where you consider your RLS to be under control?
Occasionally, some of the RLS pain comes through. For instance, recently I broke my ankle, and for a few days I did not take my medication. I noticed that a week or so later, some of the RLS pain came back. Needless to say, it is a top priority now that I remember to take it every day; however, I am aware that it may not work forever, and that I may need to up the dosage or change medications.
 
What misconceptions do you think people have about RLS?
The TV commercials make it sound like it’s imaginary. And since the symptoms cannot be detected with any kind of laboratory testing, people may think it is a psychological rather than a physical problem. Describing it is like trying to explain the feeling you get on a Ferris wheel, when you “lose your stomach.”  Most everyone has had that feeling, so they know what you mean, but if you’d never been on a Ferris wheel, imagine how hard it would be to describe.
 
What advice would you give to others who might be experiencing the same symptoms?
I would suggest reading about it online, finding the buzz words so that you can communicate with the physician in terms he or she can understand as being RLS, and getting treatment.  
 
Linda Leekley

Linda Leekley, a grandmother and registered nurse who runs her own healthcare publishing business, has had RLS as far back as she can remember. When she was a child it was so bad that she had to ask her brother to sit on her legs until they fell asleep. “The resulting pins and needles were easier to take than the restless legs,” she says. Her solution was ingenious. Rather than disturb anyone, she would grab two bath towels and wrap them tightly around her lower legs. “I don’t remember how I came upon that ‘fix’ as a five-year-old child, but it helped minimize the sensations long enough for me to get to sleep. Now, as a nurse, I know that compression stockings help some RLS sufferers, so I guess my bath towels served in that capacity.”

Back then, she had no idea that her situation was abnormal. Her mother brushed it off as “growing pains.” As a teenager, she broached the subject with the family physician, who ran a few blood tests, proclaimed her fit, and let it go at that. As an adult it got worse. She couldn’t stand having her legs confined. “Driving in a car or flying in an airplane for any length of time could be stressful. Even two hours in a movie theater could bring on the sensations, lessening my enjoyment of the best movie.”

At what point did you seek treatment, and how long did it take before you were diagnosed with RLS?
In 1997 I was diagnosed with a benign lumbar spinal tumor, which required a 17-hour surgery. After that operation, the RLS went from an occasional problem, maybe a couple times per week, to a daily occurrence. RLS began robbing me of sleep every night, leaving me exhausted and foggy-headed during the day. In addition, the sensations of RLS started coming on during daytime hours and included not just my legs but also my arms. The lack of quality sleep affected all aspects of my life. I discussed the problem with my neurosurgeon. He was the first person to officially diagnose me with RLS.

What misconceptions do you think people have about RLS?
Comedians make jokes about RLS being a “fake” condition—that it’s all in peoples’ heads. I have also read serious articles theorizing that RLS was made up by drug companies in order to sell prescription drugs. Obviously, those people have never suffered from RLS. It is indeed real. To describe it to someone who does not have RLS, I say, “Imagine that you are buried alive in a tight space. All you can think about is how you wish you could move your limbs, shift your position, and how you’ll go absolutely crazy if you can’t.” That’s how RLS feels to me. I simply have to move my legs or I’ll go nuts. Another misconception is that RLS affects only adults. While RLS does tend to get worse with age, I am living proof that it can affect children.

What advice would you give to others who might be experiencing the same symptoms?
Learn all you can about RLS. Try to test yourself for the various triggers that can worsen the condition—caffeine, nicotine, alcohol, sugar, etc. You may get lucky and hit on a lifestyle change that decreases your RLS symptoms. If people tease you about your RLS, take it in stride. They just don’t understand. Find a physician who will listen and advise you. If that’s not your family physician, then seek out a neurologist. After all, RLS is a disorder of the nervous system.

Karey Goebel

Seven years ago, 47-year-old software executive Karey Goebel began seriously dreading long car and plane rides. Eventually, even sitting at her desk was difficult. Always a runner, she found that if she skipped a day of running, the urge to move her legs would worsen and prevent her from falling asleep. She discovered she had RLS because she also has multiple auto-immune disorders, and her general physician sent her to a rheumatologist, who diagnosed her with RLS.   
 
How much of an impact does your RLS have on your life and general well being?
It can be an annoyance, but overall I think it is a gift of sorts. The condition forces me to be very active. It’s hard to sit for long periods of time, so I am always doing something. I try to run or practice yoga for at least one hour every day. For me this really helps to alleviate the symptoms. Sometimes it is tough to schedule in a workout, but I really regret it if I don’t.
 
Sitting at a desk is difficult, so I sit on a “fit ball” at my desk and roll it around all day long. I try to schedule business travel in the afternoon so that I can run for an hour in the morning before boarding a plane. The doctor prescribed medication, but I am able to control RLS with lifestyle—so I don’t take anything.