You are not alone

RLS is perhaps the most common condition you have never heard of.

Up to 7-8% of the population has this neurological condition with 2–3% experiencing severe symptoms that affect their quality of life and require pharmaceutical treatment to manage their symptoms.

How do I know if I have RLS?

In the United States, RLS is believed to affect more than 10 million adults and an estimated 1.5 million children and adolescents. About 40% of those with RLS symptoms are disrupted enough to seek medical attention.

Most studies find that women are at least twice as likely to have RLS than men. RLS is more common in older adults, although it can occur as early as the preschool years.

RLS is not diagnosed through evaluation of patient-reported symptoms. The five primary diagnostic criteria are:

An irresistible urge to move the legs usually accompanied or caused by uncomfortable and unpleasant sensations.
An onset or worsening of symptoms with rest such as sitting or lying down.
Relief with movement. Symptoms are partially or completely relieved by movements such as walking or stretching.
Symptoms follow a circadian pattern. Symptoms are worse, or only occur, in the evening or nighttime hours.
Exclusion of mimics. Symptoms are not solely accounted for by another condition such as leg cramps, positional discomfort, leg swelling or arthritis.

How do physicians diagnose RLS?

Your physician should:

Listen to a description of your symptoms and complete a diagnostic interview checking for symptoms listed under the essential criteria.
Review your medical history.
Rule out conditions that are often confused with RLS.

Your physician might:

Check your iron (ferritin) levels.
Ask you to stay overnight in a sleep study lab to determine other causes of your sleep disruption.

How can I prepare for an RLS physician visit?

To ensure you have an effective and efficient physician appointment, come prepared.

Bring your complete list of the medications (prescription, over-the-counter, and homeopathic).
Bring your complete list of vitamins and supplements.
Download and use the Foundation’s Symptoms Diary to track your symptoms, triggers, and bedtime habits.
Make a list of questions for your physician in advance.

What is Augmentation?

Some individuals who have RLS may experience a worsening of symptoms as a side effect of a class of RLS medications called dopamine agonists. This effect, called augmentation, is one of the most common but least understood problems encountered in the treatment of RLS.

If augmentation occurs, you and your doctor can work together to find a new treatment strategy that will work for you. Be sure to talk with your doctor before making changes to your regimen.

How can I stay informed?

Preparing for your physician appointments often means doing a bit of research prior. The resources listed below, may help you begin your learning journey. To access the complete list of resources available to Foundation members, log in to the Member Portal or Become a Member.

Managing RLS Symptoms

There is currently no cure for RLS, but many treatment options are available to help manage symptoms.

Your doctor can help you explore ways to lessen your symptoms through lifestyle changes, self-care and medication. If you need medication, your healthcare provider will guide you through careful trials to find a drug and dosage that works best for you.

Please note: the information provided on these pages is for informational purposes only. It should not be considered a substitute for the advice of a healthcare provider.

Treatment Strategy

Consider the following recommendations and work with your healthcare provider to create an RLS treatment strategy:

Check to see if you have iron deficiency anemia (ferritin), and possibly supplement your diet with iron.
Examine other prescription drugs, over-the-counter medications or herbal remedies you may be taking. For example, drugs commonly used to treat high blood pressure, nausea, colds, allergies and depression can trigger RLS symptoms.
Identify and track any habits or activities that worsen your symptoms.
Review your diet to ensure it is healthy and balanced.
Eliminate or limit alcohol and caffeine from your diet to help improve sleep.
Find activities that help you cope. These might include walking, stretching, taking hot or cold baths, massage, acupressure or relaxation techniques.
Identify ways to keep your mind engaged while you are sitting, with activities like discussions, needlework or video games.
Avoid nicotine as it is known to disrupt sleep.
Implement a program of good sleep habits and coping strategies.

Our patient publications are a great starting point for information. Become a member today for access to our full online library of publications. As a member, you will also receive updates on the latest advances and treatments, all while supporting research toward a cure.

Medication

The 2021 Mayo Clinic Proceedings Article outlines the treatment algorithm for the care and management of the individual living with restless legs syndrome.

First Line Therapies

Current consensus treatment guidelines recommend:
Iron - Oral and Intravenous iron treatment
Alpha-2-Delta Ligands - gabapentin, gabapentin enacarbil or pregabalin

View this video as John Winkelman, MD, PhD explains the most current treatment guidelines and management strategies for RLS.

Second Line Therapies

Although once considered a first line therapy, dopaminergic medications are now second line therapy due to augmentation. Augmentation is the worsening of RLS symptoms over time from drugs that act on the dopaminergic system. An estimated 5-10% of individuals taking dopaminergic medications experience new onset augmentation each year. Medications in this drug class include ropinirole, pramipexole and the rotigotine patch.

In addition, several drugs approved for treatment of other medical conditions have undergone clinical studies with RLS patients and provide symptom relief when used “off label.” Off label use is the prescribing of approved medications that show success in treating another medical condition other than its intended use, a practice permitted by FDA regulations.

Lifestyle

There are many non-drug therapies that can help relieve symptoms of restless legs syndrome (RLS). Some people use a nonpharmacologic approach either in place of drug treatment (also known as alternative therapy) or in addition to drug treatment (complementary therapy).

Diet Considerations

Review your diet to ensure it is healthy and balanced.

Iron deficiency without anemia has been associated with increased fatigue, depression, cognitive impairment, decreased work capacity, and also RLS. That is why we recommend checking ferritin levels to see if you have an iron deficiency and possibly supplementing your diet with iron. Note: Iron supplements should only be taken under the care and supervision of a physician.

You should also identify and avoid habits or factors that may trigger or exacerbate RLS symptoms.

Caffeine has been linked to an increase in RLS symptoms. Many people also find that nicotine, alcohol and refined sugar may lead to an increase in RLS symptoms.

Exercise/Activity Guidelines

Research demonstrates that an active lifestyle can prevent and/or treat RLS.

Regular exercisers are 3.3 times less likely to have RLS than non-exercisers. For those individuals living with RLS, one study suggests that regular exercise reduces severity of the symptoms by an average of 40 percent.

A few guidelines:

Daily is best! Make 30-60 minutes of enjoyable, physical activity a daily lifetime habit.
Emphasize activities involving the legs, including both aerobic and high-load (resistance) exercise.
Exercise in moderation. Avoid exercising to the point that muscles or joints ache or become painful as this will very likely make the RLS symptoms and your sleep worse.
Do not engage in any activity or workload that a doctor has told you to avoid.
In addition to planned sessions, increase “incidental” activities such as taking the stairs, using easy-to-find, distant parking places, performing physical chores with force and energy, etc.
Determine for yourself when to exercise for optimal relief from RLS symptoms. However, avoid significant exertion within an hour or so of bedtime.

Augmentation

One of the most common and least understood problems encountered with RLS treatment as a result of dopaminergic medications, Augmentation is defined as the worsening of RLS symptoms over time from drugs that act on the dopaminergic system. An estimated 5-10% of individuals taking dopaminergic medications experience new onset augmentation each year. The dopaminergic medication is effective when it's first started, but over time symptoms worsen or return to what symptoms were like prior to starting the treatment. Medications in this drug class include ropinirole, pramipexole and the rotigotine patch.

Download this research study for a more comprehensive understanding of the cause, result and treatment of augmentation.

Watch this video to hear from people that have experienced augmentation and share their journey to help others. You are NOT alone!

Information is Power

"I was experiencing augmentation and going through the difficult process of tapering off of my medications. I was very discouraged and overwhelmed, until I found the RLS Foundation. I found people who understood exactly what I was enduring! I went from hopeless to hopeful, knowing that there was hope at the end of this difficult process." Joe Murphy, Denver, CO

Additional Resources

RLS: Causes, Diagnosis and Treatment

This brochure discusses the symptoms of RLS, possible causes, and different treatment options.

RLS Patient Symptom Diary

Keep a log of your daily symptoms to identify conditions and patterns, to share with your healthcare provider.

Diagnosis & Treatment