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4. Treatment Options, Part B - Managing Chronic Fatigue Syndrome and Fibromyalgia, 2015 Edition
Poor sleep is an almost universal problem for people with CFS and fibromyalgia. Sleep problems include
Regardless of the number of hours slept, sleep is usually not restorative, meaning that people wake up tired rather than refreshed. (Even healthy people who are sleep-deprived experience fatigue, cognitive difficulties, irritability and muscle aches.)
Many people with 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 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:
Sleep Environment and Habits Most people with CFS/FM can improve their sleep by changing their sleep habits and their sleep environment by matching a solution to a problem. Common problems include:
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 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 this 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.
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, 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 for you. Since people with 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 trazadone or a tricyclic antidepressant to help maintain sleep. Examples of the latter include doxepin (10-25mg), amitriptyline (10-25mg) and nortriptyline. Amitriptyline has been most widely and successfully 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. Rozerem, a melatonin-derived medication, is the least expensive. 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 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. 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 CFS and FM, affecting a majority of people with CFS and FM, 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. Two of the more commonly used drugs for RLS are Requip (ropinirole) and Mirapex (pramipexole). On the other hand, antidepressant medications may trigger RLS. This possibility should be considered if your symptoms began after initiation of mood therapy. Managing Cognitive Problems Most people with CFS and fibromyalgia experience cognitive problems often called "brain fog" or "fibro fog." The problems include being forgetful, feeling confused, difficulty concentrating, problems with word recall and the inability to speak clearly. Cognitive problems have a variety of causes, including:
Like the other symptoms we've discussed, brain fog is best addressed by using a combination of strategies and by developing new habits. Your efforts to control fatigue and poor sleep will help you control fog as well. For example, brain fog is found even in healthy people when they are tired and sleep-deprived, so reducing fatigue and getting restorative sleep will help reduce cognitive problems. We will look at strategies in three categories:
Pacing for Fog
You can use the following pacing strategies to reduce cognitive problems.
Take a Rest Break
Cognitive difficulties can be caused by too much activity, so one response if you’re not thinking clearly is to take a break. In this way, fog serves a positive purpose; it helps us recognize when we are outside our limits and need to slow down. A brief rest may be enough to end, or at least reduce, your fog. For more on the power of rest, see the article “Nurture Yourself with Pre-Emptive Rest.”
Use Routine
Reduce confusion by living a predictable life with routines: doing the same things every day in the same way at about the same time. For example, always put your keys in your purse when you arrive home. If your fog is thickest in the morning, put out your clothes the night before.
Pick Your Best Time of Day
Do the tasks that require concentration and mental clarity during the hours you are sharpest. The best time of day varies from person to person. Experiment to find the time that's best for you.
Postpone, Switch Tasks or Cancel Activities
If you're not thinking clearly, postpone jobs that are mentally challenging, switch to a simpler task or take a break. As one person in the self-help program says, "When I'm too tired and foggy to think, I put things off until the next day and get extra rest instead."
Simplifying Use the four simplification strategies below to reduce cognitive problems.
Do One Thing at a Time (Avoid Multi-Tasking)
You may experience fog when you try to do more than one thing at a time, such as reading while watching TV or talking on the phone while fixing dinner. The solution: instead of multi-tasking, do only one thing at a time.
To stay on-task, teach family members to wait by saying things like “I’m [fixing dinner, talking on the phone, etc.] right now, but I’ll help you as soon as I’m done.” Avoid Overstimulation
If you are sensitive to noise, light or sensory input coming from more than one source at the same time, limit sensory input. For example, turn off the TV while talking. Find a quiet place to read or do other tasks that require concentration.
Use Lists and Other Reminders
Write out your tasks for the day on a To Do list. Use Post-It notes in prominent places to jog your memory. Use the calendar or the alarm on your watch, computer or smartphone to keep track of appointments and tell you when to do things (or to set limits and remind you to stop).
Organize your house and possessions so that they give you built-in reminders. For example, keep your medicines where you dress, so you will see them and remember to take them when getting up in the morning and getting ready for bed at night. Organize and De-Clutter
If you find your physical environment overwhelming, organize your house and remove clutter. For how-to ideas, see the success story “Illness and Housekeeping” or the flylady.net website.
Other Fog Busters Use these additional strategies to control cognitive problems.
Do Something Physical
Physical activity can increase energy and clear your mind. Activity includes exercise, laughing, singing and deep breathing. For some people, fog may be triggered by lack of nutrition. For them, eating counteracts mental fuzziness.
Plan Your Response
Deal with the fact that brain fog is confusing by planning your response ahead of time. For example, you might decide to respond to fog by lying down or by switching to a less demanding task. Over time, you will create a new habit, making your response to fog automatic.
Control Stress
Stress can trigger or intensify brain fog. You can reduce fog by avoiding stressful situations, by learning how to relax in response to stress and by training yourself to mute the production of adrenaline. For specific strategies, see Chapter 19 and the articles in the Stress Management section this website.
Do a Medication Check
Medications are a major cause of fog. If you find that a prescription drug increases your fog, consider talking to your doctor about adjusting the dosage levels or changing to a different medication. Also, discuss with your doctor the use of medications to increase attention and concentration.
The goal with drugs is to use the fewest drugs at the lowest effective doses. Part of drug therapy is to challenge medications from time to time by suspending their use. If you're interested, discuss this with your doctor. Reframe Your Thoughts
Brain fog can be frightening and embarrassing, but you can learn to speak reassuringly to yourself and to others when you feel a lack of mental clarity. Also, if you feel anxious just thinking about something you have to do, try slowing down, for example by focusing on your breath for a minute or so. For more on reframing, see Chapter 8.
Multiple Strategies Like the other symptoms discussed in this chapter, brain fog is best addressed by using a combination of strategies. When we have asked people in our groups to describe what they do to combat cognitive problems, we get lists that can be ten items or longer. Here is one person’s description of how she handles cognitive problems.
My brain fog is worst when I'm exhausted, so I try and stay within my energy envelope. The fog episodes have greatly diminished since I learned that.
Over the last several months I've gotten organized. Now I don't misplace things and can find whatever I need without stress. This orderliness helps to prevent my panic and fog. And when I'm too tired and foggy to think, I put things off until the next day and get extra rest instead.
I use self-talk too, saying "this too shall pass" or "nothing catastrophic will happen if I don't do this right now." That keeps me from going into panic mode and meltdown.
I'm mentally sharpest in the morning before I get really tired, so I schedule all my brain-heavy activities in the morning and leave the simple tasks for afternoon. I also nibble some protein every couple of hours, and that makes a huge difference in my brain power.
Other Symptoms of CFS and FM Even though we focused in this chapter on the four main symptoms of CFS or FM, people with the two conditions usually experience several or even many additional symptoms. Other common symptoms in CFS and fibromyalgia include:
It also bears repeating that people with CFS and FM often have additional medical problems, so some of your symptoms may be due to other conditions, such as those mentioned in the previous three chapters.
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