RLS symptoms tend to strike in the middle of the night, during “totally unproductive time,” one patient says. That’s because you can’t sleep, “you can’t do dishes, can’t fold laundry” or complete any of your daytime chores. Find out how one woman manages her restless legs syndrome. Plus, what’s your RLS IQ? Take our quiz to find out...
About eight years ago, Debbie Nippert, a medical clerical services worker in the small town of Clovis, N.M., started having trouble with her legs. She was no stranger to random and inexplicable pain all over her body because she had fibromyalgia. But this was different.
“I would be fine during the day because I move around a lot at my job,” she says. “But at night, this tightening sensation would come on – that’s the best way I can describe it. As soon as I would settle down and be still, sitting in a chair or lying in bed, it would start.”
Nippert was soon diagnosed with restless legs syndrome, a neurological condition that affects about 5 million Americans – 10% of the population. Roughly half have moderate to severe RLS (like Nippert), according to the National Institute of Neurological Disorders and Stroke.
Roger Kurlan, M.D., and director of the Movement Disorders Program, Atlantic Neuroscience Institute at Overlook Medical Center in Summit, N.J., has been researching the condition for more than 30 years.
RLS “may be related to an abnormal balance of a [brain] chemical called dopamine. It may also relate to chemicals called opioids, or natural opiates in the brain, [that] appear to be disordered,” Kurlan says. “For many cases, it’s hereditary. People seem to inherit these chemical imbalances.”
Nippert’s daughter has the disorder too. And fibromyalgia patients are 10 times more likely to suffer from restless legs syndrome, according to a 2010 study published in the Journal of Clinical Sleep Medicine.
“The only way to get rid of the feeling is to get up and move,” Nippert, 58, says. But Kurlan says medications like neurontin and clonazepam can help too. He suggests visiting a neurologist who specializes in movement disorders.
Read on as Nippert talks to Lifescript about her journey through RLS symptoms, her diagnosis and how she copes with its often-debilitating related conditions.
Do you remember having your first symptoms of restless legs syndrome?
I was working in a busy atmosphere, so I’d be up running around all day but at night I’d be miserable. I went to a different doctor [from the one who diagnosed the fibromyalgia]. And I said, “My legs just kill me. It feels like a tightening up inside. You wouldn’t think so, but when I walk, it relieves it.”
What did your physician do for you? Did he give you an official diagnosis?
He thought I had arthritis so he put me on an arthritis medication. Evidently, one of its rare side effects was insomnia, so it did just the opposite of what it was supposed to do!
So I went in again and the doctor who had prescribed me the medication wasn’t there, so I saw a certified nurse practitioner instead. She said it sounds like you have restless legs syndrome and prescribed a new medication, explaining that it was a nerve condition, not a muscle condition.
The new drug she gave me is supposed to be used for Parkinson’s. The only side effect is that it makes you sleepy – so it’s the best of all worlds. I also take magnesium supplements, which help me a lot.
They don’t cure it, but it helps. Since I’ve been diagnosed with restless legs syndrome, if I run out of the magnesium, my legs hurt me twice as badly. I don’t think there’s any documented proof, it’s just how it works for me.
Why do you take magnesium?
For the symptoms of fibromyalgia. Ten years ago [before the RLS diagnosis], I woke up and couldn’t move. I ached from the top of my head to the bottoms of my feet.
It scared me badly, so I went to the emergency room, where they did tests on me. At the time, my doctor said, “You have really low magnesium levels – when you have fibromyalgia, your body depletes itself of magnesium really fast.”
So he put me on magnesium supplements and they helped.
Does your movement at night bother your husband?
It does, but he’s so used to it he doesn’t pay attention anymore.
What do you do when you experience RLS symptoms at night?
I walk around the house. It’s totally unproductive time – that’s what makes it so frustrating.
You can’t do dishes, can’t fold laundry. I’ve gotten on the treadmill, walked slow enough to relieve the tension. I’ve stood next to the bed, gotten on tiptoes and marched in place. Just moving and putting weight down on my legs relieves that sensation.
Does the RLS bother you at other times or only at night?
It bothers me if I sit through a church sermon for an hour and a half. [Without my medication,] I can’t sit through a concert, a football game, a long car ride. I have to get up and go.
How else does it affect your lifestyle?
What bothers me most is the lack of sleep. You feel like you’re sleepwalking. You’re so tired mentally and emotionally, but can’t settle down to get the sleep you need.
People don’t understand what that does to you. When you have a full-time job and grandkids you want to play with, that’s the hardest part. You’re basically in good health and you want to be more active, but you can’t because you’re so tired.
Do any other treatments or therapies work for your restless legs syndrome?
I sometimes take baths with water as hot as I can stand. [The feeling] is better when I’m in the water, but as soon as I get out and my body temperature cools down, it comes right back. It’s like my legs are possessed or something.
Restless legs syndrome may be hereditary. Do any of your relatives have it?
My daughter has it. My mother has problems with her legs but won’t go to the doctor, so we don’t know for sure. When she tells me about her symptoms, it sounds like what I have.
My daughter’s [symptoms are] just now starting. She’s 38 and has had it about two years. She and my mother both started taking magnesium and say it’s helped them.
Do your RLS symptoms come and go, or are they constant?
I’ll have it for a while and then won’t. When I take my medicine, it takes an hour or two before my legs finally settle down.
You think if you’re not hurting, you can go to bed and it won’t happen tonight. But you go in and slow down, and your legs remind you really quickly that you still have it.
Do you have any idea what might have triggered the restless legs syndrome?
When I got my first pain crisis, I worked at the most stressful job I’ve ever had. I believe that stress was a major factor in my onset. I can’t make a connection to anything else.
When I eat chocolate, I know I’ll pay for it. Every once in awhile, I go for chocolate, and it bothers the fibromyalgia and makes my restless legs syndrome worse, too.
With weight gain, my legs hurt worse. When I start getting heavier, I have more problems all over.
Walking helps – power walking – everyday strolling doesn’t help.
Do you know anyone else besides your daughter and mother who has restless legs syndrome?
I go to church with a man who has it really bad. I see him get up to walk and know exactly what he’s doing. I don’t know if he’s been diagnosed. It’s no fun.
What about diet? Have you made any changes that help?
I just try to eat lots of fruits and vegetables. I figure diet and exercise help no matter what you have.
For more information and expert advice, visit our Restless Legs Syndrome Health Center.
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