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Solutions for Sleep

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By Bruce Campbell

(Note: From the series Treating ME/CFS and Fibromyalgia.)

Sleep problems are one of the most common complaints among people with fibromyalgia and Chronic Fatigue Syndrome (ME/CFS). With both conditions, poor sleep is a major source of intensified symptoms.

Regardless of the number of hours slept, sleep is usually not restorative, meaning that people wake up tired rather than refreshed. This is likely due to an insufficient amount of the deepest and most restorative type of sleep, called delta sleep.

(When healthy volunteers in a research experiment were deprived of delta sleep, they developed symptoms of fibromyalgia in a few days: fatigue, cognitive difficulties, irritability and muscle aches.)

Other sleep problems include

  • Difficulty getting to sleep
  • Frequent awakenings or waking early
  • Phase shifting (hard to fall asleep until early morning hours)
  • Oversleeping (8 to 10 hours is ideal) 
  • Vivid dreams
  • Feeling "tired but wired" (feel exhausted but mind is racing) 
  • Restless legs 
  • Periodic leg movements

In addition, many people with ME/CFS and FM experience intensified fatigue, achiness and mental fogginess that lasts one to two hours after rising.

In addition to sleep problems due to ME/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 is a good initial focus for symptom management because treating sleep can both improve quality of life and reduce other symptoms. Sleep management plans usually include a combination of strategies from three categories:

  1. Sleep environment and habits
  2. Medications
  3. Sleep disorders

1) Sleep Environment and Habits

Most people with ME/CFS and FM can improve their sleep by changing their sleep habits and their sleep environment, matching a solution to a problem. Common problems include:   

  • Irregular hours for going to bed or getting up / no schedule
  • Noisy environment (including snoring by sleeping partner)
  • Lack of control over light and temperature
  • Uncomfortable bed
  • Tension and worry
  • Not allowing time to wind down
  • Eating or drinking caffeinated products too close to bedtime 

A starting point for better sleep is to address these and other aspects of your sleep hygiene.

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. Many feel most comfortable sleeping in a recliner, which can reduce back pain.

Note: Noise includes snoring by your sleep partner. Some people with ME/CFS or FM sleep in a separate bedroom from their partner.

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.

Use Relaxation and Distraction. If you find it difficult to fall asleep, consider listening to quiet music or distracting yourself in some other way. If you are still unable to sleep, get up and engage yourself with quiet activities such as reading or listening to soft music or relaxation tapes until you are sleepy. 

Watching TV, using the computer and playing electronic games all tend to make people more alert, rather than sleepy, so should be avoided if falling back asleep is your goal.

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 the Library on our website) 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."

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 may help you adjust gradually back to more normal hours. Usually, you may not need to compensate by changing your bedtime to an earlier hour; your body can adjust itself.

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

Limit Daytime Napping. Sometimes daytime napping interferes with nighttime sleep. If you nap during the day and find that you have trouble falling asleep at night, 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 sleep.

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.

Check for Medication Side Effects: Drugs taken for other issues may affect sleep or create sleep-related problems. For example, drugs can produce a feeling of grogginess in the morning. Also, medications taken for problems other than sleep may interfere with sleep if they contain substances like antihistamines or caffeine.

2) Medications 

(Note: We turned to Dr. Charles Lapp for suggestions on medications. In addition to the ideas below, see also the section on sleep medications in his article How Your Doctor Can Help If You Have CFS/ME)

Treating sleep with drugs is challenging because there is no single medication that has proven helpful in solving sleep problems for people with ME/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, first consider over-the-counter (non-prescription) products like melatonin and valerian, simple antihistamines such as Benadryl (diphenhydramine) and Tylenol PM and Advil PM, or doxylamine (used in Nyquil and ZzzQuil).

These also help when used with other sleep treatments. Other non-prescription sleep aids include passion flower and chamomile. Amino acids, such as L-theanine and L-tryptophan are sometimes helpful when other treatments fail.

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. Because no one drug is consistently helpful for treating sleep in people with CFS and FM, you may have to experiment to find what helps you. 

Since people with ME/CFS and FM are extremely sensitive to medications, your doctor should start with low doses and increase slowly to find a dose that is both effective and tolerated.

In patients who have trouble both falling asleep and staying asleep, a particularly useful combination is Klonopin (clonazepam) with a dosage of 0.5-1mg to initiate sleep together with trazodone (25-50mg) or a tricyclic antidepressant to help maintain sleep.

Examples of the latter include doxepin (10-25mg), amitriptyline (10-25mg) and nortriptyline (10-25mg). Amitriptyline has been most widely and successfully used, but doxepin is available in a liquid form, so doses as low as one drop (equals 0.5mg) can be used.

Next step would be a non-hypnotic medication such as Lunesta (eszopiclone), Rozerem (ramelteon), or Sonata (zaleplon). These work to naturally stimulate the sleep center of the brain, and are not thought to be addicting. 

Sonata has the benefit of being short acting (3-4 hours, so it can be taken for early awakening). Lunesta has been approved for long-term use. Belsomra (suvorexant) is the newest sleep medication.

It works uniquely by suppressing orexin, a neurotransmitter that promotes wakefulness. Belsomra has been alleged to help patients not only fall asleep but stay asleep.

The hypnotic drug Ambien® (zolpidem) is useful for both sleep initiation and maintenance. Zolpidem increases the depth of sleep but users may adapt to the drug over time, and some people experience amnesia and/or sleep walking. 

Analgesics and/or non-steroidal anti-inflammatory drugs (NSAIDs) can be used for pain and often benefit sleep as well.

Xyrem (socium oxybate) has some appealing properties, because it increases slow wave sleep and restores rapid-eye-movement (REM) sleep.

The medication has been approved by the FDA as a treatment for narcolepsy and, although studies have shown its effectiveness in fibromyalgia, the FDA has concluded that the risks outweigh the benefits in treating FM.

While medications can improve sleep, they can also make it worse. Some drugs disrupt sleep by reducing slow wave sleep or causing restless legs and periodic legs movements.

These include benzodiazepines (except low-dose Klonopin), narcotics, and antidepressants such as Prozac and Wellbutrin.

Also, some drugs produce side effects, like a feeling of grogginess in the morning. Medications that contain caffeine and some antihistamines may interfere with sleep.

High doses of opioid pain relievers such as morphine and oxycodone can disrupt sleep. Ultram (tramadol) has the potential to interfere with sleep (even at low doses) because of its antidepressant-like action.

If you are on one of these opioids, you may consider taking a minimal amount at bedtime or earlier in the evening.

Heat, topical analgesics, tizanidine / Zanaflex, and Lyrica may both treat pain and aid with sleep.

3) Sleep Disorders

If your sleep doesn’t improve despite better sleep hygiene and the use of medications, consider asking your doctor for a referral to a sleep specialist, who can examine you for sleep disorders. 

Sleep disorders are very common with ME/CFS and FM, affecting a majority of people with both conditions, perhaps as many as 80%. Treating them can have a dramatic effect on symptoms.

Two of the most common sleep disorders are discussed below.

Sleep apnea, meaning absence of breathing during sleep, 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.

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, including oral or nasal devices and surgery to enlarge the airway.

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. Three of the more commonly used drugs for RLS are the pills Requip and Mirapex, and the patch Neupro.

On the other hand, antidepressant medications may trigger RLS. This possibility should be considered if your symptoms began after initiation of mood therapy

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).