Nonpharmacological Considerations and Treatment of Restless Legs Syndrome

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Chapter 30 Nonpharmacological Considerations and Treatment of Restless Legs Syndrome

The nonpharmacological treatment of restless legs syndrome (RLS) should be an essential part of an integrated approach to treating this disorder. For many RLS patients, these treatments can be as effective as medications. Some RLS patients may not need any drug therapy once appropriate nonpharmacological measures have been instituted, whereas others may be able to reduce their medications significantly. This is very important, because many of the medications used to successfully treat RLS symptoms cause side effects, such as sedation, which may limit their daytime use, and these drugs also may cause addiction or tolerance. A combined drug and nondrug therapeutic plan has the best chance of long-term success with the least amount of side effects.

As with any chronic disease that affects a large percentage of the population, there are many different treatment strategies that have been developed. RLS patients who have mild or intermittent symptoms often do not seek medical care and are likely to develop treatments on their own after much trial and error. Most often, these treatments include nondrug therapies. Nondrug therapies comprise the largest group of treatments for this disorder, but most of these remedies are anecdotal and often not reproducible among other RLS sufferers. These nonpharmacological therapies are not often reported in the medical literature or studied in a scientific manner. Indeed, due to the difficult nature of performing double-blinded controlled studies with these treatments, as yet, few, if any, such reports exist in the medical literature. This chapter will cover most of the nonpharmacological therapies that have some support in the medical literature and many of the anecdotal ones that seem to work for a significant percentage of RLS patients.

Although RLS and periodic limb movements during sleep (PLMS) are two distinct disorders, it is believed that they occur from similar mechanisms. Most of the treatments that help one of the disorders help the other. This chapter reviews the treatments of both of these conditions. In much of the medical literature, studies address one of the two disorders and assume that the other will be affected one similarly.

To properly treat RLS, the physician and patient must work together as a team. Physicians must educate their patients about lifestyle changes, proper nutrition, medications that must be avoided, and other measures they can use when their medications are not helping or cannot be taken. Patients should be encouraged to learn as much as they can about these nonpharmacological measures, keep a medical alert card that lists the medications that should be avoided (available on the Internet), and join one of the many RLS support groups listed by the Restless Legs Syndrome Foundation (www.rls.org). The information in this chapter is essential for the physician to direct RLS patients on how to manage this often disabling disorder and complements the use of the various pharmacological treatments.

Lifestyle Changes

Sleep Hygiene and Daytime Schedule

One of the most frequently cited treatments for RLS in review articles is proper sleep hygiene.13 This recommendation stems from the general treatment of insomnia where sleep hygiene is very effective. RLS symptoms and PLMS follow a circadian rhythm, usually peaking between midnight and 4 A.M. and then decreasing to a minimum between 9 A.M. and 1 P.M.4,5 Many RLS patients report that they take advantage of this phenomenon by delaying their bedtime by several hours, remaining active during the time when their worsening RLS symptoms would interfere with falling asleep. Getting enough sleep is important, as it has been noted that RLS symptoms and PLMS worsen with sleep deprivation and possibly fatigue.4,5

RLS patients can schedule their daytime activities so they do not conflict as much with the circadian worsening of symptoms. Movies can be viewed as matinees rather than in the evening, airplane flights can be booked to leave in the morning, and reading a book or the newspaper will be easier in the morning. Activities that require walking, such as housework or exercise, may help relieve RLS symptoms if delayed until later in the day. With a bit of planning, many situations that would worsen RLS or require medication can be avoided.

Patient-Generated Treatments

Situations will arise when medications do not help RLS symptoms or when medications are unavailable or cannot be taken. Other measures will then be necessary to combat the extremely irritating RLS symptoms. Self-help actions may be essential to help RLS patients get through these very trying situations. RLS patients should be ready to institute these procedures as quickly as possible, because once RLS symptoms become active, they tend to worsen rapidly and then are much more difficult to control. Preventing these symptoms from occurring is generally vastly easier than relieving them. In addition, these worsening RLS symptoms tend to create anxiety and the resulting panic reaction may further limit the patient’s ability to control the symptoms. It is thus very important that patients be aware of the techniques detailed in this chapter so that they can try them out and have the ones that work for them ready to use when necessary. After many years of suffering, it is not unusual to see RLS patients learn new helpful techniques from other RLS patients by reading RLS newsletters or participating in Internet discussion groups and local support groups. There is now a large network of support groups for RLS, and patients should be encouraged participate.

Activities

There are many activities that may alleviate RLS symptoms (see the RLS rebel Website for suggestions, members.cox.net/gunzel/index.html).6 The simplest activity is to start walking immediately. Walking will almost always relieve symptoms at least temporarily. Unfortunately, there are many situations when walking is not feasible or is inappropriate. Some of the commonest methods noted by many RLS sufferers are performing mentally engrossing activities, such as playing video or computer games, reading an interesting book, playing a musical instrument, and doing needlepoint or crossword puzzles. This is especially helpful when patients are confined, such as when traveling on airplanes or by medical conditions that preclude movement when employing other physical measures may be difficult. Stretching exercises, including yoga, often relieve RLS symptoms temporarily. There is a wide range of stretches but most will apply tension to the calf or thigh muscles. Standing on tip-toe or holding a half deep knee bend until fatigued are other examples or exercises that help. These stretches will often help mild to moderate RLS patients reduce symptoms enough so that they can fall asleep. Exercise may benefit RLS when performed at a mild to moderate level.7 Higher levels of strenuous exercise will usually exacerbate RLS symptoms even if done early in the day. Many RLS patients have been frustrated when they have to curtail their level of exercise.

Physical Interventions to Legs

One of the first measures that RLS patients will try when they cannot fall asleep is to rub their legs or get their partner to massage them. This will often give temporary relief, sometimes long enough to permit sleep. The amount of pressure needed seems to vary considerably, with some reporting that they need their legs pounded whereas others prefer milder massage. Some have even purchased electric vibrators/massagers, which may be helpful despite the lack of benefit demonstrated by the one study that used vibration therapy.8 Leg wraps, using Ace bandages, are sometimes helpful, as are surgical support hose. Even other physical measures such as having the feet tickled can bring relief of symptoms for many hours. Baths and showers are also very often used measures. Most people prefer hot water, while some prefer cold water or even alternating hot and cold water. Others have used heating pads or electric blankets. A few patients describe using ice packs for several minutes before bed. There are others who must keep their legs free of bedding or other physical contact for relief and may find that massage or other physical contact worsens their RLS symptoms.

Nutritional Considerations

Proper nutrition is often mentioned as beneficial for decreasing RLS symptoms.2 Despite the fact that there are no studies investigating the effects of diets on RLS or PLMS, this is one of the most frequently described interventions by RLS patients. A very common complaint is that ice cream (all flavors) seems to exacerbate RLS. A small percentage of RLS patients have found that decreasing carbohydrates or gluten and wheat (especially white flour) in their diet may be helpful.

In addition to the many anecdotal complaints from RLS patients, there is discussion in the medical literature about the benefits of avoiding caffeine, alcohol, and tobacco.1,3,9

Caffeine

Abstinence from caffeine is considered essential, based on a 1978 clinical series study10 that reported on 10 patients who had complete relief by withdrawing from caffeine-containing beverages, food and medications, and other xanthine-containing products. Most of the patients got rapid relief from their RLS symptoms within the first few days of abstinence. Diazepam was used in five of the patients to help with anxiety and withdrawal problems, with possibly three of them using it long term. Two of the patients reported recurrence of symptoms with the resumption of caffeine consumption. The author concluded that caffeine was the cause of RLS and that eliminating caffeine would resolve its symptoms. Although most RLS patients will note worsening of their symptoms with caffeine, there are no other reports in the literature demonstrating complete resolution of RLS complaints following the cessation of caffeine intake. It may often be very difficult to avoid caffeine and other xanthines because they are present in many foods and prescription and nonprescription drugs. RLS patients should carefully examine the foods and drugs they are taking to ensure that caffeine is not present. One study looking at the risk factors of RLS in depressed or anxious patients maintained on tricyclic antidepressants and selective serotonin reuptake inhibitors (SSRIs) found that the regular use of nonopioid analgesics (frequently combined with caffeine) appeared to be the major risk factor for RLS rather than their use of antidepressants.11

Alcohol

Alcohol leads to disturbed sleep, with even a single low dose resulting in increased sleep fragmentation and number of awakenings in non–alcohol–dependent adults.12 RLS patients will often seek hypnotics at bedtime due to the insomnia caused by their symptoms, and alcohol is a common choice due to its easy availability. Alcohol intake at bedtime shortens the time to onset of sleep but increases wakefulness in the second half of the night,13 which may then be further exacerbated by RLS symptoms. There are no studies on the effects of alcohol on RLS, but its effects on PLMS have been investigated. One study found a reduction in the arousals associated with PLMS in four patients but little effect on the overall frequency of the leg movements after an evening dose of alcohol.14 Aldrich and Shipley15 studied the effects of mild intake of alcohol (less than two drinks per day) compared with heavy drinkers (two or more drinks per day) using a large group of patients presenting to a sleep disorders clinic. They found that a clinically significant frequency of PLMS (more than 20 per hour) is more likely to occur in the subjects who drink two or more alcoholic beverages per day than in those who do not. Subjects did not drink the night of the sleep study. Interestingly, they found that women who drink two or more drinks per day are more likely to have a primary diagnosis of PLMS or RLS. It is not clear from this study whether the heavier alcohol use is causing more PLMS and RLS or if these patients use more alcohol to help them cope with their existing disorders. However, a more recent epidemiologic study using telephone interviews on 1803 adults in Kentucky found that RLS was associated with low alcohol consumption.16

Tobacco

The association of cigarette smoking and RLS remains uncertain. An early case study report describes a 70-year-old woman who had been a smoker for 50 years and then stopped due to underlying lung disease.17 Her RLS symptoms, which had been severe and refractory to all previous therapy, completely disappeared 1 month after smoking cessation. This relationship of RLS and smoking was not found in a 1997 epidemiologic study on 2019 Canadian adults using survey questions about RLS symptoms and smoking (included as a smoker if they smoked in the past 2 weeks).18 In addition, they studied a group of RLS/PLMD smokers (at least one cigarette per day) and nonsmokers in a sleep laboratory. No significant differences between these groups were found for sleep and motor variables. A major limitation in this study is that the measures of smoking did not take into account nicotine dose, duration of habit, or degree of dependence. An association with smoking (more than one pack per day) was found in the 2000 epidemiologic study noted earlier16 and another 2004 study that found ex-smokers and current smokers had higher risks for RLS.19