About RLS

A refresher on living with Restless Legs Syndrome

Watch Theresa’s story about how
she was diagnosed with RLS

Learn about the
augmentation of RLS
Understand the Risks


What is RLS?

Perhaps you’re sitting there bouncing your leg. Or reading this standing up. Or thinking you need to take a walk around the room.

People with Restless Legs Syndrome (RLS), also known as Willis-Ekbom disease, feel an overwhelming urge to move their legs and sometimes their arms or other parts of their body. This urge to move often comes with discomfort. Moving around can help relieve these symptoms.

RLS significantly affects more than 7 million adults in the United States.1 There are 2 types of RLS: primary and secondary. RLS is considered primary when the symptoms are not caused by another condition such as pregnancy or iron deficiency. When caused by another condition, RLS is considered secondary. Primary RLS is usually a chronic condition—most people who have it will always have it.

Researchers have yet to find a single cause for RLS. Neurologist Daniel Lee, MD, explains that there’s a gene associated with primary RLS, so it tends to run in families. Researchers also know that RLS most often starts in adulthood, when people are in their twenties or older, and is more common in women than in men.2

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What RLS feels like

“It felt like there were ants under my skin, like my skin was on fire.” –Theresa

Electricity, creepy crawlies, pins and needles, aching, burning, tingling, worms, bugs…

The ways people with RLS describe how it feels are as varied as the individuals themselves. These uncomfortable sensations often accompany the urge to move—the hallmark symptom of RLS.

RLS symptoms usually begin when you’re sitting or lying down and tend to get worse in the evening. Getting up and moving around—walking or stretching—typically brings relief, for at least as long as you keep moving.

Symptoms may occur only once or twice a week or on a daily basis and range from mild to severe. Most people with primary RLS progress to chronic symptoms that occur often enough and cause discomfort enough to need daily treatment.

Doctors use an international rating scale to determine the severity of RLS and recommended appropriate treatment. Only a doctor can diagnose RLS.

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The impact of RLS

Leeda describes what RLS felt like for her
and the impact it had on her life

If you’re suffering from primary RLS, you know that its symptoms can have a broader impact—affecting your sleep, your mood and, in turn, your everyday life.

“It’s this vicious cycle of being tired all day and not getting good enough sleep. I couldn’t stay focused at work. I felt like I was losing control at home. I didn’t know if I was coming or going. It shut me down because I didn’t want to be around anybody.”
—Theresa

RLS can have more practical effects as well, disrupting your ability to do the activities that you need or want to do—work at a desk, watch a movie, read, garden, sew, and travel.

“Driving is a great problem because you have to stop the car, get out, and walk around somewhere for a while for it to get better—maybe 20, 30 minutes—and then you can continue. So it can cause your trip to go a lot longer than it has to be.”
—Leeda

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How RLS is diagnosed

RLS specialist Dr Lee discusses
the challenges of diagnosing RLS

Because there’s no lab test available to confirm whether a person has RLS, diagnosing it can be tricky. Neurologist Daniel Lee, MD, explains that RLS has been underdiagnosed or misdiagnosed, but that increased awareness of the disease is a step in the right direction.

Doctors typically look for these 4 main characteristics of RLS when making a diagnosis3:

  • An urge to move the legs, arms, or other parts of the body
  • Discomfort begins or becomes worse during periods of rest
  • Walking, stretching, or doing other activities brings relief
  • Discomfort begins or becomes worse in the evening

If you're experiencing these symptoms, talk to your doctor.

Your doctor may also ask whether you have a family history of RLS or other family members who exhibit RLS symptoms. If your symptoms are relieved by certain RLS medications, this can also help confirm a diagnosis.

In some cases, your doctor may order a sleep study to determine whether you’re experiencing involuntary movements in your legs at night (called periodic limb movements)—a common occurrence in people with RLS.

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Next steps: if you think you have RLS

Does all this sound too familiar? If you think you could have RLS, make an appointment with your doctor. Only your doctor can determine whether your symptoms are due to RLS or to something else.

Here are some important things to discuss at your next doctor visit:

  • Describe the symptoms you’re experiencing, how they affect you, and if anything helps to relieve them
  • If you’ve sought treatment for your symptoms before, tell your doctor about any medications you’ve tried
  • Tell your doctor about any over-the-counter or prescription medicines you take and any herbal or dietary supplements you use
  • Let your doctor know if you have a family history of RLS or other family members with RLS symptoms
  • Ask about exercises, stretches, and other activities you can do to help manage your symptoms

If you’re diagnosed with RLS and your symptoms require treatment, be sure to ask about the different medication options available. Download a guide that can help you know what questions to ask your doctor.

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References:

  • Restless Legs Syndrome Foundation. Restless legs syndrome: Causes, diagnosis and treatment. http://www.rls.org/file/publication-loader/RLS-CAUSES-BROCHURE-9-4-15.pdf. Accessed November 21, 2016.
  • American Sleep Association. Restless legs syndrome. https://www.sleepassociation.org/patients-general-public/restless-legs-syndrome. Accessed December 8, 2016.
  • National Institute of Neurological Disorders and Stroke. Restless legs syndrome fact sheet. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Restless-Legs-Syndrome-Fact-Sheet. Accessed November 21, 2016.