Restless Legs Syndrome
Author: Colleen Symanski-Sanders, RN, Forensic Nurse Specialist
Objectives: Upon completion of this CNE article, the reader will be able to
- Describe the three different categories of restless legs syndrome.
- Explain the main symptoms of restless legs syndrome and how to make the diagnosis
- Discuss the differential diagnosis and the various treatment options for restless legs syndrome.
- Describe the overall prognosis of restless legs syndrome and the potential side effects of some of the medications used in treatment.
"Months had gone by, I was physically and mentally exhausted and could no longer delay seeing a physician. I thought this is crazy. How am I going to explain that my left leg hurts when I try to go to sleep at night, take a nap on the couch, sit in a chair, or ride in a car? When I stand or walk the leg pain resolves. Some nights, I cry myself to sleep because the pain is so severe. My husband is beginning to lose sleep as well, because I wake him as I move my leg, toss and turn, or get out of bed."
"Hesitantly, I sought the care of my primary physician, who I had only seen in the past for annual check-ups, as my health was always good. Prior to describing my symptoms, I explained that if it weren’t for the exhaustion from sleep deprivation I would not even have come to see him. I described the painful sensation in my left leg somewhere between my knee and ankle that occurs only when in a resting, sitting, or lying down position that resolves when I stand or walk. I told him my travel had become limited as well. Fearful of being labeled with a psychological diagnosis, i.e. "it’s all in your head", I waited for his response."
A Swedish neurologist, Karl A. Ekbom, described a disorder characterized by sensory symptoms and motor disturbance of the limbs, mainly during rest in the 1940’s and he named the condition "restless legs syndrome" (RLS), also known as Ekbom’s Syndrome. More than sixty years has passed yet RLS is often unrecognized or misdiagnosed by physicians and misunderstood by sufferers and their families.
An expert in sleep disorders and author of "The Promise of Sleep", Dr. William Dement, has referred to RLS sufferers as one of the most sleep-deprived patients seen in his practice and possibly one of the biggest completely un-addressed healthcare priorities in America. Awareness and education about RLS is a necessary first step in helping those who suffer from this debilitating disorder. RLS is classified as a neurologic movement and/or sensorimotor disorder that inflicts from 5% to 15% of Americans according to the National Institute of Health. The cause of RLS is currently unknown, although researchers are making significant advances in understanding this disorder. At the present time, researchers believe that RLS is probably due to a subcortical brain dysfunction involving the dopaminergic system. Onset of RLS may begin at any age, even infancy, but most patients who are severely affected are middle-aged or older. There are three known types of RLS, which are categorized as primary, secondary, or idiopathic.
- Primary RLS is inherited/familial. Primary RLS inheritance seems to follow an autosomal dominant pattern based on frequent findings of RLS in children of affected individuals and the nearly equal appearance in both sexes. Genetic studies are now underway in an attempt to identify the gene responsible for Primary RLS, if this indeed is a genetic disorder. Recent studies have suggested that patients with RLS and associated conditions who develop symptoms at a later age are less likely to have affected family members than are patients with idiopathic RLS.
- Secondary RLS is usually a reversible form of the disorder seen in patients with iron deficiency, such as gastrointestinal bleeding, pregnancy, malabsorption, or iron-poor diets. Iron deficiency produces dopamine abnormalities in animals similar to those seen in RLS patients. Iron has a direct influence on dopamine because iron is a co-factor for tyrosine, the enzyme required to metabolize dopamine. During late pregnancy, up to 15% of women develop RLS. Treatment may involve dietary changes or intermittent low-potency pain medications. After delivery, the symptoms usually disappear. The management of secondary RLS (excluding pregnancy) is treating the underlying disorder that is causing the iron deficiency and giving the patient iron replacement therapy. Treatment with iron usually improves or even resolves all RLS symptoms. However, oral treatment may take several months to be effective and for some patients may be poorly tolerated.
- Idiopathic RLS is when the disorder develops in a patient with no family history of RLS and there is no underlying or associated conditions causing the disorder.
The symptoms of RLS are similar in all three types; however, the treatment is usually based on the type of RLS that is diagnosed.
Fatigue is often the chief clinical complaint for which most patients initially seek treatment and it is at this point that a misdiagnosis (such as insomnia) can occur unless the clinician or physician delves further into the cause of the fatigue. A distinctive characteristic of RLS is that rest, quiet activities, or attempts to sleep evoke unpleasant sensory and motor symptoms most commonly of the legs and sometimes the arms. Individuals typically describe their symptoms as worse when sitting or lying down, with a tendency to be more prominent at night. Sensations range from mild to intolerable combined with a need to move the legs. Patients might describe their sensations as pulling, prickly, or electric.
Individuals with RLS have a sleep-onset difficulty because lying down and/or sitting activates their symptoms. In addition to experiencing a prolonged time in falling asleep, patients may have difficulty with sleep maintenance. A contributory factor can be periodic limb movements while awake. Typically, these are brisk movements that occur most commonly in the legs. Once sleep is obtained, there is relief, unless the patient is aroused and the cycle repeats itself. In severe cases, patients may have a total sleep time of only a few hours per night, which produces extreme daytime fatigue or tiredness. This extreme fatigue does affect an individual’s performance, functioning, and mental status, but does not cause the sleepiness seen when falling asleep while driving or in patients with narcolepsy. However, symptoms progress over time in about two-thirds of patients and may be severe enough to be disabling. Travel by plane, train, or as a passenger in a car can become extremely unpleasant, as do many other activities that involve prolonged sitting, such as dining, going to the theater, watching television, or just reading a book.
The RLS Study Group developed a rating scale known as the International RLS that is used to gather information on the severity of symptoms. Patients rate 10 symptom factors on a scale of 0 (no symptoms) to 4 (most severe). Five of the rating factors pertain to symptom frequency and intensity, and the other five factors address the effect of the symptom on sleep and daytime function. The patients are then asked to rate the symptom severity for the preceding week, overall as one of the following:
- Mild: Mild RLS, a rare occurrence, produces mild disruption of sleep with little distress.
- Moderate: symptoms occur up to two times a week, resulting in significant delay of sleep onset with some disruption of daytime functioning.
- Severe: symptoms occur three to five times a week and results in interruption of sleep and impairment of daytime functioning.
- Very severe: symptoms occur daily, resulting in significant sleep deprivation with impairment of daytime functioning.
Assessment and Diagnosis
Restless legs syndrome is diagnosed most often in people in their middle age years and effects females more than males. Many individuals with RLS, particularly those with primary RLS, can trace their symptoms back to childhood. These symptoms may have been called "growing pains" or attributed to being "hyperactive". The diagnosis is based primarily on the patient’s history and assessment. The physical assessment, laboratory, and diagnostic testing must rule out other disorders prior to making a diagnosis of RLS. The physical examination is usually normal in patients with RLS. A serum ferritin level to rule out a ferritin deficiency and a chemistry profile to rule out uremia and diabetes are routine lab tests. A sleep study (polysomnography) is not routinely indicated because RLS is diagnosed on the basis of history and clinical findings. The following are particular areas usually ruled-out.
- Peripheral neuropathy. Causes leg symptoms that are different from RLS and are usually not associated with motor restlessness or helped by movement, and do not worsen in the evening or nighttime. Sensory complaints are typically numbness, tingling or pain. Small fiber sensory neuropathies, as seen in diabetes, can often be confused with RLS.
- Intermittent claudication. This is pain in the legs from poor arterial circulation and most often occurs during activity and is relieved with rest.
- Nocturnal leg cramps. Nocturnal leg cramps are typically painful, palpable, involuntary muscle contractions that are most often focal. In addition, they are usually unilateral and have a sudden onset.
- Varicose veins. The examination of the lower extremities usually rules out this disorder. In addition, the pain with varicose veins most often occurs with increased pressure as seen in the standing position and is relieved when lying down.
The medical evaluation for RLS can be an exhausting and time-consuming process for patients. Patients with RLS can have difficulty tolerating MRIs or scans because of the prolonged lying down position that is required for many procedures.
Unfortunately, to date, there are no specific diagnostic tests available that identify RLS. In 1995, the International Restless Legs Syndrome Study Group developed criteria for diagnosing RLS. The following minimum criteria must be met in order to make a diagnosis of RLS:
- A compelling urge to move the limbs usually associated with paresthesias or dysesthesias.
- Motor restlessness as seen in activities such as floor pacing, tossing and turning in bed, or rubbing the legs.
- Symptoms worse or exclusively present at rest (i.e. lying or sitting) with variable and temporary relief by activity.
- Symptoms worse in the evening or at night.
The goal for treatment of RLS is to alleviate symptoms – particularly the ones that cause sleep disturbances and discomfort. The selection of treatment modalities depends on the age of the patient, severity, duration and frequency of symptoms, and comorbid illnesses, including pregnancy. Life style changes, nutrition, and iron supplements are first step interventions, however, in many cases, symptoms of RLS progress so that relief is insufficient with these methods.
There are several medications that can be prescribed to help relieve the symptoms of RLS, but they currently do not have U.S. Food and Drug Administration approval for the treatment of RLS. Several drugs (that have FDA approval for other disorders) have been evaluated in the treatment of RLS. The most commonly used are classified into four categories:
- Dopaminergic agents
Each class of drugs has its own benefits, limitations, and side-effect profile. The choice of medication is dependent upon the timing and severity of symptoms and the patient’s ability to manage any side effects.
1. Dopaminergic agents
First-line therapy for primary or idiopathic RLS is with dopamine agonists such as pramipexole (Mirapex), pergolide (Permax), and ropinirole (Requip), as they stimulate dopamine receptors in the body and are useful in moderate to severe RLS. Although dopaminergic agents are used to treat Parkinson’s disease, RLS is not a form of Parkinson’s disease. All of these drugs should be started at low subtherapeutic doses and increased slowly to a level that obtains an optimum effect. This approach is used in order to decrease potential side effects. A side effect that often results in patients discontinuing the therapy with these agents is hallucinations, seen in 5% to 10% of cases. Other common side effects include nausea, hypotension, syncope, and somnolence. Recent reports indicate a high efficacy of dopamine agonists, but the role of their long-term use in treating RLS is unknown.
Of the dopamine precursors, carbidopa-levodopa (Sinemet, Atamet) has been used the longest, but it has recently been found to cause augmentation, a serious problem in the majority of patients who take it for the treatment of RLS. Augmentation is when symptoms worsen during drug therapy and may become more severe, start earlier in the day, and may spread to different parts of the body (from the lower extremities to the upper extremities). Augmentation can develop shortly after therapy is initiated or may occur years later. Clinicians should be aware that research is investigating whether or not the dopamine agonist medications might also cause augmentation. Another important issue with Carbidopa-levodopa, is that it should not be taken within two hours after eating a high-protein meal, because protein rich meals may interfere with drug absorption.
It should be noted that certain antipsychotic drugs (the phenothiazines, thioxanthenes, and butyrophenones) are dopamine antagonists and may decrease the effectiveness of the dopaminergic medications.
This class of drugs interferes with chemical activity in the nervous system and brain by reducing communication between nerve cells and thus, may promote sleep, relieve anxiety, reduce restlessness, and relax muscles. For some patients, they have been effective in relieving the nighttime symptoms of RLS. They are used either at bedtime in addition to a dopaminergic agent or for individuals who primarily have nighttime symptoms. The most commonly used sedative is clonazepam (Klonopin). Unfortunately, they can cause daytime sleepiness and cognitive impairment, particularly in the elderly.
3. Pain relievers/Opioids
Low-potency opioids such as codeine, propoxyphene (Darvon or Darvocet), tramadol (Ultram), or hydrocodone (such as Vicodin or Lortab) can be beneficial for patients with mild or moderate RLS. The use of higher potency opioid agents, such as oxycodone (i.e. Percocet, Percodan, or Roxiprin), morphine, hydromorphone, or methadone may be reserved by some physicians for patients with severe RLS, who do not respond to low-potency opioids. However, it must be noted that all of these opioid agents (low-potency and high-potency) can be addicting with long-term use, and thus, should only be temporary medications in most instances.
Anticonvulsants are a treatment option particularly for patients who have not responded to dopamine agonists, or patients with coexisting peripheral neuropathy and/or when RLS discomfort is described as pain with marked daytime symptoms. Once such anticonvulsant drug that preliminarily appears to be showing some promising effects is gabapentin (Neurontin).
RLS can be a life long disease that for some becomes more debilitating over time. Sometimes, patients can have remissions; however, symptoms usually return and can become more severe with recurrence. In general, patients who report RLS onset associated with another medical condition rapidly develop symptoms over a few years. In contrast, those patients whose RLS is not related to any other medical condition or who report symptoms starting in childhood or young adult life, show a very slow progression of symptoms requiring many years before symptoms occur every day.
The John Hopkins Center for RLS under the direction of Dr. Allen and co-investigators identified 519 individuals with RLS for a quality of Life study. Of these, 424 participants completed a 36-item questionnaire designed to assess their quality of life. Questions addressed daily function, social function, sleep quality, and emotional well-being. The respondents’ scores were then compared to people with medical conditions other than RLS. The study indicated that people with RLS had scores below the general population in all areas measured, including pain, general health, a sense of energy and vitality, social functioning, and mental health. Dr. Allen stated, "We had expected that RLS would adversely affect quality of life, but we were surprised at the severity of the impact. Improving quality of life should be an important consideration in planning and evaluating the treatment for RLS."
Patient Education: "DIFFERENCE"
- Determine lifestyle changes on a personal basis, such as which habits and activities worsen or improve your symptoms of RLS.
- Implement a good sleep routine as a first step toward resolving your symptoms, as fatigue and drowsiness tend to worsen the symptoms of RLS. You may find that you achieve your best sleep later in a 24-hour cycle – for example, sleeping from 2 AM until 10 AM.
- A positive sleep routine involves a cool, quiet, and comfortable sleeping environment; going to bed at the same time every night; arising at the same time every morning; and obtaining a sufficient number of hours of sleep to feel well rested.
- Find an exercise program that works for you.
- A program of regular, moderate exercise helps promote sleep.
- Regular, moderate exercise may also alleviate RLS symptoms. In contrast, excessive exercise typically intensifies symptoms and therefore should be avoided if possible.
- Some experts recommend that you exercise at least six hours before bedtime to avoid an adverse impact on your sleep, however, some individuals with RLS find that isometric or mild exercise immediately before bedtime is useful, such as walking, stretching, or using a treadmill or stationary bike.
- Find self-directed activities that counteract your symptoms of RLS, even if they are only temporary solutions.
- Take a bath or shower, massage the affected limb(s), apply hot or cold packs, use vibration, perform acupressure, and/or perform relaxation techniques, such as yoga to relieve symptoms.
- Engage your mind during times that you must stay seated (such as when you are a passenger traveling in a car) through activities like a stimulating discussion, concentrating on intricate needlework, or playing video games.
- Resist fighting the urge to move, as symptoms may get worse. Get out of the bed or the chair, or if traveling, stop frequently.
- Network with the RLS foundation and a support group.
- Consume a healthy balanced diet.
- Though caffeine consumption may initially appear to relieve your symptoms, the use of caffeine, most likely, only delays and often intensifies symptoms to a time later in the day. Caffeine-containing products include chocolate and caffeinated beverages such as coffee, tea, and certain soft drinks.
- Alcoholic drinks tend to increase the duration or intensity of symptoms.
- Educate yourself on products to avoid. Do not stop any medications without discussing them with your physician. The following products are believed to potentially intensify the symptoms of RLS:
- Anti-nausea medications
- Some cold and allergy medications
- Calcium channel blockers
"Two years have passed since I first sought medical care. The first year was mostly wrought with unpleasant memories, incorrect diagnoses, unrelieved pain, and minimal sleep. Fortunately, in the second year, I found a research specialist and a physiotherapist, who found the cause of my symptoms – RLS. I was treated with medications and closely monitored for side effects. I have had one period of remission that lasted several months; however, the symptoms have returned. The pain in my legs is pretty much constant. I take the smallest dose of medication at around 9:00 PM because it causes drowsiness and drains energy from me during the day. As for life style changes, I was fortunate that I was able to find a teaching position and welcomed standing for most of the day. Road trips take longer because frequent stops to walk are necessary. I have not resumed travel by plane."
One does not learn to live with pain – one learns to function with pain. Clinicians can make a difference when assisting patients with achieving optimal pain management; that difference can be a positive experience or a negative experience. Remove your own subjectivity from the assessment and listen to the patient. Patients who have severe RLS and need surgery or are confined to bed will have more difficulty with pain control because of the pain caused by RLS. Regardless of the severity of symptoms, clinicians with a better understanding of RLS will recognize optimal patient outcomes when this disorder is included in patient care plans.
- National Institute of Health, Restless Legs Syndrome: Detection and Management in Primary Care, NIH Publication No. 00-3788. March 2000.
- National Heart, Lung, and Blood Institute Working Group on Restless Legs Syndrome (2000). Restless legs syndrome: Detection and management in primary care. American Family Physician. http://www.aafp.org/afp/20000701/108.html
- Restless Legs Syndrome Foundation, "Dr Werra: Committed to Making a Difference", Night Walkers, February 2002: pages 8-9.
- Restless Legs Syndrome Foundation, "Living With Restless Legs", 2001.
- Restless Legs Syndrome Foundation, http://www.rls.org
- Restless Legs Syndrome Foundation, Medical Bulletin, Revised April 2001
- Evidente VGH, Adler CH. How to help patients with restless legs syndrome -Discerning the indescribable and relaxing the restless. Postgraduate Medicine. Vol. 105, No. 3, March 1999.
Colleen Symanski-Sanders, RN, Forensic Nurse Specialist, has been a Registered Nurse for over 18 years. She has extended her education into forensic nursing, criminal profiling, and psychopathy receiving a Certificate as a Forensic Nurse Specialist. She has over 16 years experience in public health and home care nursing.
Colleen has been an author of educational material for St. Petersburg College, St. Petersburg, Florida. She has also lectured on a variety of topics at numerous nursing symposiums and conferences across the country. She is on the Editorial Board for "Home Health Aide Digest" and "Private Duty Homecare" publications.