Restless Legs Syndrome (RLS) is a central nervous system disorder characterized by an almost irresistible urge to move the legs, especially when resting or trying to sleep. Many patients complain about disagreeable sensations, i.e., creepy-crawly or coca-cola bubble feelings that are relieved only by moving the legs. Consequently, people with RLS experience sleep disturbances, discomfort, and continuing fatigue. Nurses may encounter patients with RLS on both in-patient units and in outpatient settings. Nurses must understand this condition in order to promote appropriate treatment and interdisciplinary understanding.
Described first in the 1600s, symptoms of RLS were rediscovered in 1940s by Ekbom (Milligan and Chesson, 2002). The exact prevalence of RLS is not known; however, estimates from past research indicate that as many as 15 percent of the population may be affected by this syndrome. RLS occurs in children and many people report experiencing RLS during childhood; however, the incidence increases substantially with aging.
Affected individuals often describe RLS as "crazy legs" or the heebie-jeebies. This central nervous system disorder apparently has a genetic link. New research indicates that chromosome 12q may be the linkage site and researchers found markers indicting an autosomal recessive mode of transmission. Strong evidence of familial traits may improve understanding as well as early diagnosis for this treatable condition.
RLS is a common condition that often goes unrecognized and thus, untreated. RLS occurs more often than diabetes mellitus and severe symptomatology is experienced by 10 to 15 percent of the population; that percentage climbs to 25 percent of people over 65 (Werra, 2001). A recent telephone survey conducted by the National Sleep Foundation reported a prevalence of RLS of 27 percent in the over 65 population (Milligan and Chesson, 2002). With a careful history, providers often uncover RLS experiences during childhood, in fact, as many as two fifths of patients with severe RLS recount having symptoms before the age of 20 (Thorpy, et al. 2000).
Unfortunately, questions that permit primary care providers to identify RLS are seldom included in a typical history. Often when patients indicate they have difficulty sleeping because they are restless, the usual response it to prescribe a sedative. Consequently, few people with RLS are identified in the primary care setting. Recently, however, the RLS foundation and other professional groups have been promulgating information about RLS to inform health care professionals and patients. While, providers don’t ask about RLS, patients often suffer in silence because they think their condition is not treatable by medicine. With the current push to educate providers and patients, the true prevalence of RLS will be uncovered.
Primary RLS is a central nervous system (CNS) disorder not caused by stress or reactions to stressful events. Recent research supports a genetic origin with possible location on the 12q chromosome (Desautels, et al., 2001) and providers have long known about the tendency for RLS to "run in families". Dopamine synthesis is needed to maintain the normal function of the CNS and RLS sufferers may synthesize inadequate amounts of dopamine to support CNS integrity.
Several secondary causes of RLS have been identified. The most prominent of these is iron deficiency (Silber and Richardson, 2003; Lee et al., 2001; Thorpy et al., 2000). Some patients with RLS have low iron stores with serum ferritin levels below 50 mg per ml yet do not have significant anemia. Newly diagnosed RLS patients and RLS patients whose symptoms have gotten worse should have their ferritin levels checked.
Neurologic lesions have been identified as another secondary cause of RLS. This symptomology may appear because of spinal cord and/or peripheral nerve lesions. Some patients with vertebral disk disorders also exhibit RLS symptoms. Neuropathies related to diabetes and alcohol also result in RLS symptoms.
As many as 20 percent of pregnant women experience RLS. Symptoms typically worsen as the pregnancy progresses and then subside completely in the post-partum phase. Pregnancy RLS may be linked to folate and ferritin deficiencies.
As many as 50 percent of patients with end stage renal failure experience RLS (Thorpy et al., 2000). High uremic levels are thought to precipitate the syndrome, which typically subsides after transplantation. Patients on dialysis may have extreme difficulty during dialysis treatment as RLS intensifies when the patient is resting or still.
While caffeine has been linked to RLS, the evidence supporting that hypothesis is not strong (Harvard Medical Letter, 2002). Many think the association among insomnia, RLS and caffeine is related to the stimulant effect of the caffeine not that caffeine causes an exacerbation of RLS. Other drugs have been linked to RLS including tricyclic antidepressants, selective serotonin reuptake inhibitors, lithium, and dopamine antagonists (Thorpy, 2000).
RLS experts, under the direction of the National Institute of Health, recently met to specify criteria for the diagnosis of RLS. Four main components resulted from their discussions. They are:
Patients with RLS report extreme difficulty falling and staying asleep and, subsequently, experience the symptoms of sleep deprivation, i.e., difficulty focusing on work, irritability, and mood swings. The vast majority of people with RLS experience periodic jerking of the affected limbs; the jerking movements may occur as frequently as every 20 to 30 seconds with enough force to cause arousal from sleep. Sleeping partners of RLS sufferers may be awakened and kicked, forcing them to sleep elsewhere.
Approaches to form the correct diagnosis of RLS must include a thorough history of sleep experience and patterns. Questions should be specific to elicit enough detail so the provider can make the diagnosis and/or rule out other causes. Questions should be asked of both the patient and the bed partner. Approximately 85 percent of RLS patients have a co-existing condition called periodic limb movement disorder (PLMD) involving flexion of the knee, ankle, and hip with extension of the big toe (Milligan and Chesson, 2002).
All patients should be asked about their sleeping patterns. When a sleep complaint is voiced, pursue with questions to determine if the sleep disruption is acute or chronic. The following are some questions to be asked.
A thorough exploration of the sleep patterns helps the practitioner differentiate between primary insomnia and sleep disturbances related to RLS. Also, specific questioning will help the patient remember symptomatology that he/she may have had for a long time and may not even think the symptoms represent a deviation from normal sleep.
A thorough physical exam should be performed to identify any underlying secondary causes and to rule out other conditions. The neurological and vascular systems require extensive examination to identify the presence of spinal cord, peripheral nerve, or vascular disease.
While there are no laboratory tests to definitively diagnose RLS, some tests may help identify secondary causes. A serum ferritin of <50 mg per ml is often found in RLS patients who respond with a complete resolution of symptoms when treated with iron. Blood chemistries to identify the presence of diabetes or uremia should be done. Sleep studies are typically not done; RLS is usually diagnosed on the basis of history and clinical findings. However, some clinicians believe they help determine co-existing sleep disorders such as obstructive sleep apnea and rapid eye movement behavior disorder (Milligan and Chesson, 2002).
The differential diagnosis includes ruling out:
Periodic Limb Movement Disorder (PLMD) is related to RLS and most patients with RLS report symptoms of PLMD as well. PLMD is also known as nocturnal myoclonus and manifests itself though periodic, repetitive movements of the limbs, particularly the legs during sleep. Patients, usually unaware of any movement, complain about both the quality and quantity of sleep. They may be aware of brief periods of arousal; they awaken tired and un-refreshed. Like RLS, PLMD is described best by the patient’s bed partner. Unlike RLS, patients with PLMD do not complain about unusual sensations that are relieved when the legs are moved. PLMD is diagnosed with both an electromyogram (EMG) and an electroencephalogram (EEG). Both test reveal abnormal electrical impulses. The key difference between RLS and PLMD is that RLS is voluntary movement in response to sensations that are relieved with movement. RLS occurs when the patient is resting, but awake; PLMD involves involuntary limb movement and occurs when the patient is sleeping.
Both RLS and PLMD are related to other medical disorders including emphysema, rheumatoid arthritis, fibromyalgia, amyotrophic lateral sclerosis, and other muscle pathology. Appropriate treatment depends on an accurate diagnosis.
Ekbom first described the relationship between blood donation and RLS in 1956; new research at the Mayo Clinic supports this relationship between RLS and blood donation (Silber and Richardson, 2003). Serendipitously, researchers at the Mayo sleep disorder center were referred a patient for treatment of RLS. The patient was a frequent blood donor and had iron deficiency. Silber and Richardson (2003) decided to study the relationship between donating blood and the serum level of ferritin in blood donors. They measured serum ferritin concentration in patients with histories of multiple blood donations. All the patients in the study met the RLS study group criteria for RLS, had donated blood at least three times a year for the last three years, and had iron deficiency defined as a serum ferritin < 20 ug/L. Eight subjects fit the study criteria and were treated with iron or with iron and levodopa. Symptoms resolved in three patients and improved markedly in five. The levodopa was discontinued when serum iron normalized and the symptoms disappeared (Silber and Richardson, 2003). While the administration of iron was beneficial to all of the subjects, blood donation was not determined to be the cause of RLS in the subjects who had RLS prior to blood donation nor in the subject with a family history of RLS (Silber and Richardson, 2003). (Please note: The researchers in this study do not want to discourage people from donating blood which is so important to our nation’s health care system, rather, they encourage staff at donor sites to question potential donors about RLS.)
The occurrence of sleep disorders in children with ADHD is well documented. While clinicians have observed difficulties such as settling down, going to sleep, tossing and moving, sleep studies reveal no abnormalities. Studies support parental and clinical observations that ADHD children have high level of nocturnal activity including PLMS and RLS. In a highly controlled cohort study, researchers observed sleep patterns in ADHD children and cohorts for one week (Konofal, et al., 2000). Children were admitted to a hospital unit and had time to acclimate to the environment before the study was started. Room temperature was maintained so that children could sleep without covers over the limbs. Researchers found that the number, duration, and range of movements were significantly greater in the ADHD children with no difference in total sleep time and sleep efficiency (Konofal, et al., 2000). Children with ADHD who were most active in the daytime also were most active during sleep. This study seems to provide additional support that RLS is related to the dopaminergic system.
For children with RLS and ADHD, the difficulty to stay awake and pay attention mat be increased. While it seems paradoxical that the best treatment for ADHD includes stimulant drugs, they may be effective because they relieve the sleepiness for the child. No studies exploring this possibility were found in the literature.
Sleep disturbances occur frequently in pregnancy, particularly during the last trimester. However, a baseline assessment of sleep patterns taken at the initial visit may provide information that the woman has a history of ADHD, poor sleep, sensations similar to RLS, etc.
RLS symptomatology in pregnancy has also been linked to deficiencies in iron and folate. Investigators Lee, Zaffke, and Baratte-Beebe (2002) studied the role of folate and iron in RLS during pregnancy. While pregnant women voice many complaints related to poor sleep quality, the occurrence of RLS can be managed if it results from a deficiency of folate and/or iron. The authors reasoned: 1) iron is necessary for the synthesis of dopamine, 2) serum iron levels decrease at night, 3) dopamine production increases at night, and 4) the ferritin molecule is necessary to transport iron across the blood-brain barrier. Also, women taking vitamins with folic acid experienced far less RLS than pregnant women not taking folic acid (Lee, et al., 2002). Their study established baseline levels prior to pregnancy in women who planned to become pregnant within the next year. They found that during the third trimester when folate levels were lowest, RLS increased indicating a possible link between the occurrence of RLS symptoms and folate (Lee, et al., 2002).
The uremia associated with end-stage renal disease (ESRD) precipitates RLS in approximately 50 percent of patients (Thorpy, et al., 2000). It is thought that RLS is brought about as the glomerular filtration rate diminishes and nitrogenous products accumulate in the body, acid-base balance is disturbed, and renal patients are typically deficient in iron stores.
In a qualitative study of patients with end stage renal disease, researchers asked patients to identify symptoms and the intensity of the symptoms. Over half the sample of 307 indicated RLS as a significant problem that contributed to their lack of energy and feeling tired, along with difficulty falling and staying asleep (Curtin et al., 2002). Though the researchers thought that sleep problems were directly related to the sense of tiredness and lack of energy, they did not explore the occurrence of RLS during dialysis, nor did they investigate any relationship with iron, ferritin or folate.
ESRD patients undergoing dialysis may express extreme difficulty sitting still during the dialysis process. Similarly, the tiredness resulting from RLS and the inability to achieve restful sleep is compounded for ESRD patients. RLS symptoms usually disappear with renal transplantation.
Patterns of sleep change dramatically in the elderly. Less sleep is needed at night and many elderly take a nap or two during the day. Many elderly, particularly women, complain about the inability to fall asleep and/or to stay asleep. This insomnia impacts daytime activity, e.g., activity level, awareness, vigilance, positive mood, etc. and places the elderly at risk for falls, automobile accidents and impaired relationships with friends and family. Barthlen (2002) described the relationship among RLS, insomnia, and obstructive sleep apnea in geriatric clients. He strongly recommended that patients maintain a detailed sleep log including the following:
Milligan and Chesson (2002) describe the diagnosis and management of RLS in the elderly. They advise practitioners to be highly index suspicious when an elderly patient complains about difficulty sleeping or changes in sleep patterns. They estimate that approximately 35 percent of people over 65 experience RLS (Milligan and Chesson, 2002). As with all populations, they recommend a careful history and ruling out secondary causes of RLS.
While there is no definitive cure for RLS, there are several treatment strategies that dramatically reduce symptomatology. The goal of the therapy should be to achieve the best result with the lowest risk. Start with the basics, including examination of the diet. A healthy balanced diet with limits on caffeine and alcohol is recommended. A diet high in fruits and vegetables along with protein and complex carbohydrates should provide the necessary nutrients. A dietician might be able to help patients examine their dietary habits and help them plan a diet that meets their physical needs.
Patients may be advised to alter their sleep patterns. Some patients experience fewer symptoms after midnight and until mid morning, so it may work best to plan to sleep between midnight and ten in the morning. Some patients find relaxation techniques beneficial. Also, when the patient must sit for extended periods of time, advise him/her to engage in something that will distract attention from the sensations felt in the limbs. Some patients with mild to moderate disease get relieve from a hot bath, leg massage, and mild exercise (Milligan and Chesson, 2002).
Iron replacement to raise the ferritin level substantially reduces symptoms in patients with ferritin levels < 50 ug/L. Iron replacement is not efficacious when the ferritin level is over 100 ug. L (Milligan and Chesson, 2002).
Some prescription medications make the symptoms of RLS worse. These include calcium channel blockers, anti-emetics, antihistamines, tricyclic anti depressants, selective serotonin reuptake inhibitors, lithium, phenytoin, and dopamine antagonists.
The decision to use pharmacologic intervention is based on the severity of the symptoms. Some patients with mild RLS may not need medications. No drug has been specifically approved for the treatment of RLS; however, research currently underway is testing the efficacy of dopaminergic agents, sedatives, analgesics, and anticonvulsants. Considerations for the initiation and selection of pharmacologic agents are influenced by a number of factors.
The severity of symptoms is a key factor. Mildly affected patients may elect not to take medication, whereas those patients with symptoms that interfere with quality of life may require either a dopamine agonist or a strong opioid. For patients who experience intermittent symptoms, a medication taken on an as needed basis may suffice. Patients with co-morbid conditions or those who are pregnant require careful individualized therapy. No medication used for RLS has been approved for use in pregnancy. Patients in renal failure are usually able to take the medications but the dosage need careful consideration depending on how the drug is metabolized and whether or not it is dialyzable.
Dopaminergic agents are the first-line therapy for RLS because evidence suggests that RLS patients have lower CNS levels or reduced responsiveness to dopamine. Carbidopa/levodopa (Sinemet 25/100 mg) or a dopamine receptor agonist (Pergolide, Pramipexole) successfully relieves symptoms. However as many as 80 percent of patients on carbidopa/levodopa develop "augmentation" which means that, after a period of time on the drug, symptoms occur in the daytime rather than at night (Thropy et al., 2000). If augmentation occurs, carbidopa/levodopa is discontinued and patients are often started on an opioid (codeine, hydrocodone, and propoxyphene).
In a letter to the editor of Psychiatry and Clinical Neurosciences (2002), a case study describes a 50 year-old woman who was placed on the dopamine agonist Pramipexole (Mirapex) as inpatient treatment for major depression. By the fifth day of therapy, the woman reported sensations of creeping and crawling in both legs within one hour of taking the medication. After the drug was stopped, her RLS completely resolved. RLS symptoms are less likely to appear if Pramipexole is not used as monotherapy.
Benzodiazepines, such as clonazepam and temazapam, have relieved symptoms in some patients and may improve sleep. However, some patients report daytime sleepiness. Benzodiazepines are contraindicated in the elderly so this class of drugs for RLS has limited use because so many RLS patients are over 65. The addictiveness of these drugs makes them an undesirable choice.
Anticonvulsants, including carbamazepine, valporic acid, and gabapentin, have been used with success in some patients primarily by improving sleep quality rather than deceasing limb movements. Carbamazepine 100 to 400 mg is the anticonvulsant used most often; however, it causes many drug interactions, rashes and dizziness and may leave patients somnolent (Milligan and Chessron, 2002).
Some RLS patients have experienced relief with Clonidine. Side effects include hypotension, dermatitis, and sleepiness.
Jakobsson and Ruuth (2002) report success treating RLS by implanting a pump to deliver drugs intrathecally. They describe a severely affected 67 year-old male who was taking 1400 mg of levodopa, still experiencing RLS symptoms, and suffering from the side effects of levodopa. The researchers implanted a pump to deliver morphine 0.5 mg and bupivacaine hydrochloride 5 mg a day. All RLS symptoms disappeared the first day and side effects, i.e., mild nausea, difficulty with urination, resolved within a week. Sixteen months later the patient continued to report no RLS symptoms and the morphine had been reduced to 0.25 mg a day. Similar results were reported about a 52 year-old woman with severe RLS who was symptom-free at three and one-half years after the implant and maintained on 0.08 mg of morphine (Jakobsson and Ruuth, 2002).
Patient education is a key factor in the management of RLS. Some primary care practices now have patient education material in the waiting room to encourage patients to speak up about RLS symptoms.
Similarly, it is imperative that providers question patients about sleeping patterns. When patients complain that they are not sleeping, further exploration is warranted. Questions pertaining to changes in lifestyle, marital status, diet, family history, and exercise are important to help the provider understand the full picture. The provider is well advised to quiz the patient about unusual sensations in the legs and whether a patient’s bed partner has noticed any leg movements.
Patients who are diagnosed with RLS require information about diet and nutrition, avoidance of caffeine and alcohol, and the usefulness of vitamin and mineral supplements. They should be asked to maintain a sleep diary to track changes in sleep patterns and to help determine if treatment is successful or not. Physical activity including stretching proves beneficial to many RLS patients. Staying mentally active and keeping the mind engaged in thought is helpful to many patients when they must be still for extended periods of time.
Patients are also encouraged to talk about their RLS. Sharing information with providers, for example, on admission to the hospital, can obviate misunderstandings. Support groups for RLS sufferers exist and can be contacted through the RLS Foundation, Inc., PO Box 7050 Dept. WWW, Rochester, MN 55902-2985. A free brochure entitled "Living with Restless Legs" is available by sending the foundation a self-addressed envelope with a 57-cent stamp. The group maintains an informative web site at http://WWW.RLS.org.
The nurse plays a key role for the patient with RLS. Whether the patient is seen in the inpatient or outpatient setting, keen observation and a high index of suspicion are valuable for the nurse.
In the inpatient setting the nurse will interact with the patient more than any other provider and is in the perfect position to identify undiagnosed patients as well as monitor the progress of RLS patients undergoing treatment. Listed below are opportunities hospital and long term care nurses have to improve care for RLS patients.
Nurses in the outpatient setting also have opportunities to improve the care of patients with RLS. Good observation skills are a must. Here are some ideas.
Nurses in all settings should be aware of RLS and the impact it has on quality of life. Perhaps the most important things for nurses are to seek to understand patient behavior and remember to remain non-judgmental.
RLS is a common central nervous system disorder that affects as many as 10-15 percent of the population. RLS is characterized by voluntary movements of the extremities especially in response to unpleasant sensations described as creepy-crawly, bubbly feelings in the legs. The symptoms are most prevalent when resting or trying to go to sleep. RLS differs from PLMD in that RLS involves voluntary movement whereas PLMD occurs involuntarily during sleep; patients with PLMD are often unaware of the movement, whereas RLS patients report the movement relieves the unpleasant sensations.
While it is seen most often in people over 65, many people recall experiencing symptoms during childhood. A familial tendency has been identified and some genetic linkage discovered. RLS remains under diagnosed because patients don’t mention the symptoms and providers don’t explore sleep patterns thoroughly. A thorough sleep history should be documented on all patients expressing any degree on insomnia. Sleep assessments should be included in the basic history of each patient to create a baseline database and increase patients’ awareness about normal sleep expectations.
Patient and family education along with lifestyle modification may prove beneficial to many patients. Excessive tiredness during waking hours impacts negatively on quality of life as well as safety. For elderly patients who experience significant sleep disturbances, it may be necessary to discuss whether the sleep deprivation interferes with safe driving, climbing stairs, and operating some machinery.
Providers and patients need to know that some drugs make the symptoms of RLS worse and many of them are prescribed frequently. RLS patients should stay away from calcium channel blockers, anti-emetics, antihistamines, tricyclic anti-depressants, selective serotonin reuptake inhibitors, lithium, phenytoin, and dopamine antagonists.
Many effective therapies are available for patients with RLS. Dopaminergic agents are the most useful therapy; some patients experience relief with pain relievers and anticonvulsants. Eighty percent of patients on carbidopa/levodopa experience a phenomenon called "augmentation"; augmentation means that the unpleasant sensations typically experienced in the evening and at rest occur during daytime hours. Although Benzodiazepines, such as clonazepam and temazepam, relieve some symptoms and have improved sleep, they are contraindicated in elderly patients; their addictiveness makes them a poor choice for any patient needing long-term therapy. Although not widely studied, very low-dose intrathecal morphine provided significant relief for extended periods of time.
Support groups and internet-based information is available to health professional, patients, and families. An RLS foundation is housed in Rochester, MN and provides free information.
RLS is an important consideration for nurses planning care for hospitalized patients. If identified on admission, misunderstanding regarding a patient’s behavior can be avoided. "Wanderers" at night may be patients experiencing RLS. Changes in unit routines may be necessary to assure that these patients can receive enough rest; it may be necessary to allow these patients to go to sleep later and sleep later in the morning.
Nurses are in the perfect position to assist with the early diagnosis and treatment of RLS. Keen observation skills and a high index of suspicion are necessary in hospitals, outpatient settings, long term care and all settings where nurses interact with patients. Nurses are urged to inform themselves and their colleagues about this common, treatable condition. Placing informative material in patient areas is a good first step.
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