4. Treating Sleep

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Poor sleep is an almost universal problem for people with CFS and fibromyalgia. Sleep problems include difficulty getting to sleep, waking in the middle of the night or early in the morning, and over sleeping.

Regardless of the number of hours slept, sleep is usually not restorative, meaning that people wake up tired rather than refreshed. In addition to sleep problems due to CFS and FM, a majority of people with the two conditions experience sleep disorders such as sleep apnea and restless legs syndrome.
 

Addressing sleep problems can be good initial focus for symptom management because treating sleep can both improve quality of life and reduce other symptoms. If you are troubled by poor sleep, consider creating a sleep management plan using a combination of strategies selected from the three approaches described below: improved sleep hygiene, use of medications and treatment of sleep disorders.

Sleep Hygiene: Sleep Environment and Habits

Sleep can be disturbed by such things as irregular hours, a noisy environment, tension and worry, an uncomfortable bed or a noisy sleeping partner. A starting point for better sleep is to address these and other aspects of your sleep hygiene.
 

1. Have a Comfortable Environment. Provide yourself with an environment conducive to good sleep by using a good mattress, and by exercising control over light, noise and temperature. (Note: Noise includes snoring by your sleep partner. Some people with CFS or FM sleep in a separate bedroom from their partner.)
 

2. Establish a Routine. Go through the same routine each night and have a consistent bedtime. Prepare for sleep by gradually reducing your activity level in the several hours before bedtime and by having a regular routine you go through consistently at the same time each night.

Your routine might include things like getting off the computer and turning off the TV at a certain hour, taking a bath, brushing your teeth and reading. These habits can help you wind down and get ready psychologically for sleep.
 

3. Use Relaxation and Distraction. If you find it difficult to fall asleep, consider listening to quiet music or distracting yourself in some other way, such as by counting or watching your breath.
 

4. Control Stress and Worry. Stress often leads to muscle tension, which makes falling asleep more difficult. Practicing relaxation methods can help you ease tense muscles. Try relaxation procedures (you'll find examples in articles on in the Stress Management section of our Library) or soak in a hot tub or bath before going to bed.
 

If you have difficulty falling asleep because you are preoccupied with problems, consider setting aside a "worry time" each night before going to bed. Write down all your worries and what you'll do about them. If worries come up as you are trying to go to sleep, tell yourself "I've dealt with that. I don't have to worry because I know what I'm going to do."

Alternatively, you can make an appointment with yourself to deal with the issues the next day, then tell yourself "I've set aside time to deal with that tomorrow."
 

5. Get Up at the Same Time. If you are going to bed later and later, setting an alarm so that you get up at the same time each day can help you adjust gradually back to more normal hours. Usually, you may not need to compensate by changing your bed time to an earlier hour; your body can adjust itself.
 

6. Use Pacing. Being too active during the day or early evening can create a sense of restlessness called feeling "tired but wired." Keeping activity within limits and having a winding down period before going to bed are antidotes.
 

7. Limit Daytime Napping. Often, daytime napping interferes with night time sleep. If you nap during and day and find that you have trouble falling asleep, or your sleep is worse than usual when you nap, you might consider sleeping only at night. (On the other hand, if napping does not disturb your nighttime sleep, you may need more rest.)
 

8. Avoid Caffeine, Alcohol & Tobacco. Consuming too much caffeine, drinking alcohol and smoking can make getting good rest more difficult. Avoid products with caffeine, such as coffee, tea, soft drinks and chocolate, for several hours before going to bed. Avoid alcohol before bedtime; it can create restless and uneven sleep. The nicotine in tobacco is a stimulant, thus smoking is a barrier to falling asleep.

Medications

Treating sleep with drugs is challenging because there is no single medication that has proven helpful in solving sleep problems for people with CFS and fibromyalgia. Also, many patients develop drug tolerance, so that a medication becomes less effective over time. For both these reasons, sleep problems can benefit from a flexible, experimental approach that utilizes a variety of strategies.
 

If you think medications might improve your sleep, you might start with non-prescription substances. These include over the counter products like melatonin and valerian, antihistamines such as Benadryl and Tylenol PM. If you prefer prescription medications, a reasonable approach is to find a physician willing to work with you to find what helps in your unique situation.

Often a combination of two drugs is prescribed, one to initiate sleep and another to maintain sleep. Medications commonly prescribed to treat sleep problems include zaleplon (Sonata) and eszopiclone (Lunesta) to help you fall asleep and drugs such as cyclobenzaprine (Flexeril), tizanidine (Zanaflex), doxepin elixir, amitriptyline (Elavil) or trazadone (Desyrel) to help you stay asleep.
 

While medications can improve sleep, they can also make it worse. Some sleep medications that are effective when used occasionally can produce poor sleep if used frequently. Also, some drugs produce side effects, like a feeling of grogginess in the morning. Medications taken for other problems may interfere with sleep if they contain substances like antihistamines or caffeine.

Treating Sleep Disorders

A majority of people with CFS and FM have one or more sleep disorders. Treating them can have a dramatic effect on symptoms. If improving sleep hygiene and using medications don't produce an improvement in your sleep, consider asking your doctor for a referral to a sleep specialist, who can examine you for sleep disorders. Two of the most common disorders are sleep apnea and restless legs syndrome.
 

Sleep apnea, meaning absence of breathing, occurs when a person's airway becomes blocked during sleep and he or she stops breathing. An episode can last from a few seconds to a few minutes. The person then awakens, gasps for air and falls asleep again, usually without being aware of the problem.

The cycle can occur many times a night, leaving the person exhausted in the morning. Sleep apnea deepens the fatigue experienced by people with CFS and fibromyalgia.
 

Apnea is a treatable condition. A common remedy is the use of a CPAP (continuous positive airway pressure) machine. The patient wears a mask through which a compressor delivers a continuous stream of air, keeping the airway open and thus allowing uninterrupted sleep. Use of a CPAP machine can eliminate 90% to 100% of a person's sleep apnea. Other treatments are also used for this condition. If you are excessively tired in the morning or have trouble staying awake during the day, you may have apnea.
 

Restless legs syndrome (RLS) involves "twitchy limbs," strong unpleasant sensations in the leg muscles that create an urge to move. The problem is often at its worst at night.

Self-management techniques that may help include reducing consumption of caffeine and other stimulants, establishing a regular sleep pattern, doing exercise that involves the legs, distracting yourself by immersing yourself in activity, using hot or cold baths or showers, and taking supplements to counteract deficiencies in iron, folate and magnesium.

Several categories of medications may also help, including sedatives, drugs affecting dopamine, pain relievers and anticonvulsants. Some of the more commonly used drugs for RLS are the pills Requip and Mirapex, and the patch Neupro.

For more on the diagnosis and treatment of sleep apnea and Restless Legs Syndrome, see chapters 11 and 12 in The Mystery of Sleep by Dr. Meir Kryger (Yale University Press, 2017). .