If you live with RLS I hope the following information will help to answer some questions for you. Please do not use this information to self-diagnose any symptoms you may notice...but please do speak to your doctor and/or treatment team. I am sharing this information for your personal information and entertainment and it's not meant to take the place of qualified medical care.
Restless Legs Syndrome - Topic Overview
Restless legs syndrome (RLS) is a disorder related to sensation and movement. People with restless legs syndrome have an unpleasant feeling or sensation in parts of their bodies when they lie down to sleep. Most people also have a very strong urge to move, and moving sometimes makes them feel better. But all this movement makes it hard or impossible to get enough sleep.
Restless legs syndrome usually affects the legs. But it can cause unpleasant feelings in the arms, torso, or even a phantom limb (the part of a limb that has been amputated).
Usually there isn't a clear reason for restless legs. The problem often runs in families. Sometimes there is a clear cause, like not getting enough iron. If that's the case, treating the cause may solve the problem.
Women sometimes get restless legs while they are pregnant.
Other problems that are sometimes linked to restless legs syndrome include kidney failure, rheumatoid arthritis, diabetes, nerve damage, anemia, and Parkinson's disease. But most people who seek treatment do not have any of these other problems.
Restless legs syndrome makes you feel like you must move a part of your body, usually your legs. These feelings are often described as tingling, "pins and needles," prickling, pulling, or crawling.
Moving will usually make you feel better, at least for a short time. This problem usually happens at night when you are trying to relax or go to sleep.
After you fall asleep, your legs or arms may begin to jerk or move. These movements are called periodic limb movements. They can wake you from sleep, which adds to your being overtired. Although periodic limb movement is considered a separate condition, it often happens to people who have restless legs syndrome.
The main symptom of restless legs syndrome (RLS) is an irresistible urge to move because of uncomfortable and sometimes painful sensations deep within a part of your body. The feelings usually affect the legs but can also affect the arms, torso, or a phantom limb (the part of a limb that has been amputated). Some people describe the sensations as aching, creeping, crawling, or prickling. Symptoms usually begin about 15 minutes after you lie down to sleep or to relax or when you have not moved for long periods, such as when traveling in a car or airplane. Symptoms that occur frequently can result in significant sleep loss, fatigue, and problems with daily functioning.
After they are asleep, most people with RLS also have involuntary or jerking leg movements called periodic limb movements. These movements can interrupt your sleep, which adds to problems with fatigue. Periodic limb movements may also occur during the day, although most people move around after their legs begin to bother them. As a result, the periodic limb movements that people have when they are awake may not be noticed except under unusual circumstances.
Restless legs syndrome and periodic limb movements also often disturb the sleep of a bed partner. This can cause fatigue for both people and can strain the relationship.
Symptoms may start during infancy or any time during your life. At first, your symptoms may be mild and occur only once in awhile. Typically, symptoms get worse with age. After age 50, many people with this condition have daily symptoms and suffer from significant sleep loss. Severe insomnia, fatigue, anxiety, depression, and lack of social activity can become a problem and cause a decline in quality of life.
Restless legs syndrome may start or become worse during pregnancy, especially after week 20.
Exams and Tests
A doctor diagnoses restless legs syndrome by asking questions about your symptoms. A physical exam may be done to look for other possible problems that could be causing your symptoms.
Restless legs syndrome is diagnosed by your doctor based on the following four criteria:
- You have an urge to move a part of your body, usually because of uncomfortable sensations such as tingling, "pins and needles," prickling, crawling, or pain. In some cases, you may not feel any unpleasant sensations but still feel the urge to move your legs or your arms.
- The sensations and the urge to move begin or get worse during periods of rest or inactivity, such as when you are sitting or lying down.
- The sensations and the urge to move are partially or totally relieved by movement. But relief may be temporary and only last while you are walking, stretching, or moving.
- The urge to move and the sensations are worse in the evening or at night. But some people may have severe sensations and urges to move throughout the day and night.
Other factors that may support a diagnosis include:
- Having a family history (in a parent or sibling) of restless legs syndrome.
- Having periodic limb movements—involuntary jerking or movement of your legs—while you are awake or asleep.
- Showing improvement when the medicine dopamine is used.
A sleep study called a polysomnography may be done to help your doctor diagnose restless legs syndrome or rule out other sleep disorders. This test records the electrical activity of your brain, eye movements, muscle activity, heart rate, breathing, air flow through your nose and mouth, and blood oxygen levels.
Although this test is not essential, it provides details of limb movement symptoms. These details may help evaluate the severity of your symptoms. The severity ranges from people who have restless legs syndrome occasionally, with only mild difficulty falling asleep, to those who have it frequently, with repeated interruptions of sleep. Serious sleep problems can greatly affect your ability to function during the day.
Common problems with diagnosing restless legs syndrome
Many cases go undiagnosed because:
- Many people do not seek a doctor's help when they have symptoms.
- Most people visit a doctor during the day, when symptoms are not present or are only mild.
- Some doctors do not recognize the condition and may believe that the symptoms are caused by other conditions, such as insomnia, stress, muscle cramps, or arthritis.
Restless legs syndrome does occur in children but it is hard to diagnose for the same reasons. Children often are not able to describe their symptoms. A parent's observations of the child's behavior and sleep may be helpful. Knowing that a parent or other close relative has restless legs syndrome can also help the doctor make a diagnosis of restless legs syndrome in the child.
Treatment for restless legs syndrome is based on the type of symptoms you have and how bad your symptoms are. Getting regular exercise and enough sleep may relieve mild symptoms. Medicines may be tried when symptoms are severe and interfere with sleep and daily functioning. If your symptoms are being caused by another medical condition (such as iron deficiency anemia), that condition can be treated first.
Initial treatment Changing your daily routine is sometimes enough to control your symptoms. Stretching, walking, exercising regularly, taking a hot or cold bath, using massage, losing weight if you are overweight, and avoiding smoking and caffeine may reduce or control your symptoms.
If your symptoms are caused by another medical condition such as diabetes or iron deficiency anemia, you will be treated for that condition first. For example, if iron deficiency is causing restless legs syndrome, you will be prescribed iron supplements.
For restless legs syndrome that starts during pregnancy, your doctor may recommend conservative treatment, such as regular exercise and stretching, to relieve symptoms. Your condition may be reevaluated if it doesn't go away after you have given birth.
Children who have restless legs syndrome are not usually treated with drugs right away. First regular, moderate exercise and regular sleep routines are tried. If this treatment is not effective, the doctor may prescribe medicine.
Ongoing treatment If your symptoms do not improve, drugs may be used to control the urge to move and help you sleep, such as:
- Dopamine agonists, such as ropinirole (Requip).
- Anticonvulsants, such as gabapentin (for example, Neurontin).
- Opioids, such as oxycodone (for example, Percodan).
- Benzodiazepines, such as diazepam (for example, Valium).
Also, your doctor may prescribe drugs like zolpidem (for example,Ambien) or eszopiclone (Lunesta) alone or together with dopamine agonists, opioids, or anticonvulsants.
If your doctor recommends medicine, make sure that you discuss expectations and understand the potential benefits and risks of the drug. Let your doctor know about all of the other drugs you are taking. Drugs taken for other conditions sometimes contribute to restless legs syndrome. For example, antidepressants improve restless legs syndrome in some people but make it worse in others.
Treatment if the condition gets worse If you continue to have symptoms even though you are receiving treatment with drugs and are exercising regularly, eating right, and not smoking or using caffeine, your symptoms may need to be reevaluated. Many other conditions can cause the sensations found in restless legs syndrome, including several vitamin and mineral deficiencies.
Your doctor may recommend different drugs or a combination of drugs. Follow up with your doctor if your symptoms do not improve.
There are ways to improve your symptoms of restless legs syndrome at home.
- Exercise. Regular, moderate exercise may reduce symptoms. Avoid long periods between activity and avoid sudden bursts of intense activity. Talk to your doctor before you start an exercise program.
- Heat or cold. Your symptoms may be relieved by bathing in very hot or very cold water. Or try a heating pad, hot water bottle, or ice bag. Keep a cloth between the heating pad, hot water bottle, or ice bag and your skin. Do not use a heating pad with children.
- Changing your sleep schedule. Fatigue can make your symptoms worse. Because symptoms typically improve around 4 a.m. to 6 a.m., try going to bed later than usual or allowing extra time for sleeping in to help you get the rest you need.
- Stretching and massage. You may be able to control your symptoms by gently stretching and massaging your limbs before bed or as discomfort begins.
- Caffeine and alcohol. These may make your symptoms worse.
- Certain medicines. Some prescription and over-the-counter (OTC) medicines (such as cold and sinus medicines) can make symptoms of RLS worse. If you think your symptoms get worse after you take a certain medicine, talk to your doctor.
- Being confined for long periods. Try to plan for times when you will need to remain seated for long stretches. For example, if you are traveling by car, plan to make some stops so you can get out and walk around.
- Excessive exercise. Although moderate exercise may help relieve symptoms, unusually intense workouts may make them worse. Try to figure out at what level exercise helps and at what point it triggers restless legs syndrome.
See your doctor if your symptoms do not improve, if they become worse, or if they significantly interfere with your sleep and daily functioning.