Having a long-term health problem like CFS or fibromyalgia means learning to live with symptoms that persist. The absence of a cure, however, does not mean that there are no treatments. On the contrary, there are many ways to alleviate the symptoms of the two illnesses. While treatments don’t heal either CFS or FM, they can reduce the effects of symptoms and help those destined for recovery to move forward.

This chapter discusses the major treatment options for four of the most common symptoms of CFS and fibromyalgia: fatigue, pain, poor sleep and cognitive problems. The approach to symptom management you’ll find here is based on three principles.

Medical treatments for CFS and fibromyalgia can be useful for most patients and you’ll find them discussed in this chapter. But using medications for CFS and FM can be frustrating, because there is no standard treatment for either illness, that is, no medication that is predictably effective. If you want to use medications to treat your illness, a sensible approach is to find a sympathetic physician willing to work with you in a process of trial and error to find the drugs that help in your individual situation.

Your success in controlling symptoms, however, will probably depend more upon your efforts and willingness to adapt than on anything a doctor does for you. Making changes in your daily habits has several advantages over medications. Strategies such as pacing and stress management are inexpensive, safe and have a high probability of helping. Most of the patients we have known who have shown marked improvement or who have recovered, have relied primarily or exclusively on self-management. In the words of CFS/FM physician Dr. Charles Lapp, “There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFS or FM.”

Fighting Fatigue

Fatigue is the central symptom in CFS and a significant problem for most people with fibromyalgia. The word fatigue may be a misleading way to refer to the physical and mental exhaustion that often permeates the lives of patients, making them listless and unable to complete normal activities.

Fatigue can have many causes. One is the illness itself, which uses energy in attempting to heal, leaving patients with less energy for daily activities. Perhaps the single most important key to controlling fatigue and other symptoms is to adjust activity level to fit the limits imposed by CFS or FM. We call this “living within the energy envelope” or pacing. Rather than fighting the body, with repeated cycles of push and crash, you seek to understand your body’s new requirements and to live within them.

Living successfully with CFS or fibromyalgia requires many practical adaptations: developing, through trial and error, a detailed understanding of your new limits, and then gradually adjusting your daily habits and routines to honor those limits. Each person’s limits will be different, depending mainly on the severity of their illness. Dr. Paul Cheney summarizes this approach well when he says, “Proper limit-setting, which is always individualized, is the key to improvement.” The next two chapters contain both forms for defining your energy envelope and practical strategies for living within it.

Another part of the challenge of adjustment is psychological: accepting that life has changed and learning to see your life in a new way. This acceptance is not resignation, but rather an acknowledgment of the need to live a different kind of life, one which honors the limits imposed by illness. This acknowledgment requires you to develop a new relationship to your body. In the words of one person in our program, “Getting well requires a shift from trying to override your body's signals to paying attention when your body tells you to stop or slow down.” This process of accepting limits and learning to live a different kind of life usually takes several years. For ideas on coming to terms with loss, see Chapter 16.

Fatigue can have many causes besides your illness. Two are poor sleep and pain. Non-restorative sleep leaves you as tired in the morning as you were before going to bed. Pain is inherently tiring and also tends to produce muscle tension, which, in turn, creates fatigue. Physical discomfort can also make it difficult to get to sleep or to sleep comfortably. Treating sleep and pain using the strategies described in the next two sections can help you control your fatigue.

The relationship between fatigue on the one hand, and pain and sleep on the other, works in the other direction as well. Feeling tired increases the experience of pain. Fatigue can lead to too much daytime rest or produce the “tired but wired” feeling that makes good sleep difficult. So, just as treating poor sleep and pain can reduce fatigue, treating fatigue can have a positive impact on sleep and pain. The three symptoms interact, affecting one another. An improvement in one symptom can have a positive effect on the other two. Probably the most common symptom to attack first is sleep.

Other causes of fatigue include:

If too much activity is your problem, the most effective response is pacing, as described earlier. Pacing begins with defining your limits. You can do this in a general way by rating yourself on the CFS/FM Rating Scale. Your self-assessment suggests a safe daily activity level. If you wish to understand your limits in detail, for example how much exercise you can do or how much time you can spend with others, you can fill out the Energy Envelope form in the next chapter. Once you have understood your limits, you can learn to live within them using pacing strategies, such as priority setting, rest breaks, short activity periods, living by a schedule, and managing special events, such as vacations and holidays. For more on pacing, see Chapter 10. See also the daily and weekly schedule worksheets in the previous chapter.

You can find relaxation and other stress management strategies in Chapter 13. Because stress is so pervasive in chronic illness and because it intensifies symptoms such as pain and poor sleep, many patients use a variety of strategies to combat it. Like other self-management strategies, stress management techniques affect multiple symptoms.

Powerful emotions are part of chronic illness, a response to the disruption, losses and uncertainty it brings. Emotions can be treated using a combination of self-management strategies, professional help and medications. Chapter 14 describes how to manage depression, anxiety and anger. Chapter 16 offers resources to help you move beyond grief.

If being ill reduces your activity level and leads to deconditioning, you may be able to start a spiral in the other direction with exercise. Exercise produces a higher level of fitness, thus reducing the fatigue caused by inactivity. It also helps combat pain, lessens stress and improves mood. Exercise is usually recommended for fibromyalgia patients and may also be helpful for CFS as well. For more, see Chapter 12.

CFS and fibromyalgia patients often experience several different kinds of problems getting good nutrition. First, because of energy limitations, lack of appetite or severity of symptoms, some people may not spend enough time to prepare and eat balanced meals. Eating well can provide energy and boost the immune system. Second, most patients experience an intolerance of alcohol and many are sensitive to caffeine and/or sweeteners. Cutting down or eliminating these substances may reduce symptoms and mood swings and also improve sleep. Lastly, about one third of CFS patients, and a comparable portion of fibromyalgia patients, experience sensitivities to various foods or have difficulty absorbing nutrients. The most effective strategy for controlling food allergies is an elimination diet, in which foods are taken out of the diet and then reintroduced one by one. For more ideas on getting good nutrition, see Chapter 12.

Many medications, including some anti-depressants and drugs prescribed for pain, create fatigue as a side effect. To combat this source of tiredness, ask your doctor about fatigue when reviewing medications. A change of medication or a lower dosage may help.

Strategies for Pain

Pain is usually the central symptom in fibromyalgia and is often a problem for CFS patients as well. Like fatigue, pain can have a variety of causes and is best managed with a variety of strategies, often involving both medications and self-management techniques.

For many CFS and fibromyalgia patients, pain relief through medications may be modest, achieved through the use of non-prescription products, such as aspirin and other over-the-counter pain relievers. Others find help through prescription medications such as Ultram (Tramadol) and, in some cases, narcotics. Prescription drugs that improve sleep can have a beneficial effect on pain as well. Anti-depressants, such as Elavil (Amitriptyline), Prozac and Paxil, are often tried. Some patients experience neuropathic or nerve pain, burning or electric shock sensations, felt most commonly in the hands and feet. This type of pain is often treated with anti-seizure medications, such as Neurontin.

Successful treatment of CFS and fibromyalgia is usually very individualized, depending on factors such as a person's symptom pattern and her response to different medications. Experimentation is usually required to find medications that are helpful. It is difficult to predict which treatment may be successful. Sometimes a medication will be effective for a time, and then lose effectiveness. Usually, patients are started on dosages that are a small fraction of normal dosage levels.

As with fatigue, pain is a reflection of the limits imposed by illness, so pacing is helpful. The key is to know your activity limits and to stay within them using techniques like short activity periods, task switching and rest breaks. Taking regular, scheduled rests can be particularly helpful. Such rest is one of the most popular strategies used by people in our program. People who use planned rest often take one or two rests a day, ranging in length from 10 minutes to half an hour. Whatever the length, the secret is to rest on a schedule, regardless of how you feel, rather than waiting for symptoms to intensify. For a detailed discussion of pacing, see Chapter 10.

With pain, just as with fatigue, it is usually helpful to explore interactions among the three major symptoms. For most people, fatigue deepens the perception of pain. When we feel tired, we experience pain more intensely, thus reducing fatigue lessens pain. Similarly, poor sleep intensifies pain, so improving sleep can help control pain.

Pain can have other causes as well, including the following: 

Strategies Effective for Multiple Symptoms
Because the causes of the four symptoms discussed in this chapter include overactivity, stress, emotions and inactivity, using strategies such as pacing, stress management, managing emotions and exercise can have a multiplied effect, since they address multiple symptoms. Here, I’ll discuss how these strategies affect pain.

For overactivity as a cause of pain, the response is pacing, as described a few paragraphs above. For pain caused by stress, the response is relaxation and other stress management techniques. Because stress deepens the perception of pain, and because stress causes muscle tension, which is another source of pain, relaxation reduces pain by reducing both stress and muscle tension.

Since worry, frustration and other emotions create muscle tension, relaxation procedures that reduce pain through reducing stress can also help reduce the effects of negative emotions. Also, our subjective experience of pain is increased by emotions. Fear intensifies pain, so managing anxiety can help control pain. For more, see Chapter 14.

Another set of strategies for controlling pain through managing emotions has to do with changes in your thinking. An increase in symptoms may trigger negative thoughts like “I'm not getting anywhere,” “I'll never get better,” or “It's hopeless.” Such thoughts can then make you feel anxious, sad, angry and helpless, intensifying pain and triggering another round of negative thoughts. The section of Chapter 13 titled “Changing Your Thinking” describes how to recognize and gradually change habitual negative thoughts.

Pain-Specific Remedies
In addition to using medications and self-management strategies that reduce several symptoms at the same time, there are other non-medical measures you can take specifically in response to pain. We’ll look at three: body mechanics, physical treatments (like heat, cold and massage) and guaifenesin.

Being attentive to body mechanics can reduce pain. Experiment with how you hold your body and how you move. Try different postures, both standing and sitting, to find which ones minimize your pain. Also, note how long you can maintain a posture without creating problems. Many fibromyalgia patients find that staying in one position for more than 20 minutes or so creates stiffness and intensifies pain. The solution is to move periodically. Check your body frequently for muscle tension. Areas that are often tensed up include the jaw, neck and shoulders. Movement, massage or telling yourself to relax can help.

When working in the kitchen, consider placing one foot on a footstool to reduce the strain on your back. If chopping or other tasks that involve repetitive motion cause pain, experiment to find how long you can work without creating pain and how long you have to pause before returning to work. If you have problems standing, consider sitting on a stool.

Physical treatments can help, too. Heat and cold can be used for temporary relief of pain. Heat is best utilized for reducing the pain that results from muscle tension and inactivity. The warmth increases blood flow and thereby produces some relaxation, reducing pain and stiffness. For localized pain, you might use a heating pad or hot packs. For overall relief, people often use warm baths, soaks in a hot tub or lying on an electric mattress pad.

Cold treatments decrease inflammation by reducing blood flow to an area. They also may numb the areas that are sending pain signals. You might use gel packs, ice packs or bags of frozen vegetables. With both heat and cold, you should not use the treatment for more than 15 or 20 minutes at a time.

Massage of painful areas can also provide temporary relief from pain. Like heat, massage increases blood flow and can also relieve spasms. You can consider three different forms of massage: self-massage using your hands, massage using a handheld device, and professional massage. If you use a massage therapist, ask her to be cautious and to check frequently on your pain sensitivity.

Another popular alternative treatment for fibromyalgia is guaifenesin, the main ingredient in many cough syrups. The idea of using it for fibromyalgia was developed by Dr. Paul St. Armand of UCLA, who believes that use of the product helps correct a metabolic defect in the excretion of phosphates. Although taking guaifenesin has few side effects for most users, many who take it report that their symptoms increase initially. Also, for those patients who are helped by it, improvement usually doesn’t occur for several months. The one research study on guaifenesin showed no advantage over a placebo, though supporters complained about the study design. Like most treatments for CFS and fibromyalgia, guaifenesin is not a cure-all and doesn’t help all who try it, but it appears effective for some patients. If you’re interested, consult with your physician.

Solutions for Sleep

Poor sleep is one of the most common problems for fibromyalgia patients and is also very prevalent among people with CFS. With both illnesses, poor sleep is a major source of intensified symptoms. Patients may spend a night in bed, but wake up as tired as when they went to bed. Other sleep problems are common as well, such as difficulty getting to sleep, waking in the middle of the night or early in the morning, and over sleeping.

It is widely believed that a major cause of sleep problems, especially for fibromyalgia patients, is abnormal patterns of brain waves. The human brain is active during sleep, moving among several different types of sleep, each with a characteristic brain wave. The deepest and most restorative type of sleep is referred to as delta sleep. Patients with CFS and fibromyalgia often get less delta sleep than they need, and thus don’t feel refreshed when they get up in the morning. When healthy volunteers in a research experiment were deprived of delta sleep, they developed symptoms of fibromyalgia in a few days.

Treating sleep is especially 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.

Medications commonly used to treat sleep problems include over the counter products like melatonin and valerian; antihistamines, such as Benadryl; clonazepam (Klonopin); tricyclic antidepressants, such as amitriptyline (Elavil); benzodiazepines, such as Halcion; and the hypnotic drug Ambien. Often a combination of two drugs is prescribed, one to initiate sleep and another to maintain sleep. If you think medications might improve your sleep, a reasonable approach is to find a physician willing to work with you to find what helps in your unique situation.

Another way to improve your sleep is by looking at the interactions among pain, fatigue and sleep to determine how the vicious cycle of the three symptoms intensifying one another can be interrupted and an upward spiral begun. For the interaction between fatigue and sleep, ask whether daytime napping might interfere with your ability to fall asleep. Also, if your activity level leaves you feeling “wired,” pacing strategies may be helpful. Pain can make it difficult to get good sleep, so reducing pain before going to bed can help. You might experiment with pain medications and time in the bath or hot tub before going to bed.

Poor sleep can have other causes as well, including the following:

Improving Sleep Environment and Habits
You may be able to improve your sleep by changing your sleep environment or your sleep habits.

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.)

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 “going-to-bed” rituals you do consistently at the same time each night. Things like brushing your teeth or doing light reading every night before retiring can help you wind down and get ready psychologically for sleep.

3. Get Up at the Same Time: 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 don’t need to compensate by changing your bed time to an earlier hour; your body will adjust itself.

4. 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.)

5. Use Relaxation or Distraction to Fall Asleep: It may be easier to fall asleep if you listen to quiet music or distract yourself in some other way, such as by counting or watching your breath. Relaxation techniques can help you fall asleep.

Other Sleep Problems
Some patients have one or more additional sleeping problems besides insufficient delta sleep. Two of the most common are restless legs syndrome and sleep apnea. The former 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. Check with your doctor if you believe you might have this condition.

Apnea, meaning absence of breathing, occurs when a person’s airway becomes blocked during sleep. An episode can last from a few seconds to a few minutes. The person then awakens, gasps for air and falls asleep again. This can occur many times a night. A common remedy is the use of a CPAP (continuous positive airway pressure) machine to keep the airway open. The patient wears a mask through which a compressor delivers a continuous stream of air, keeping the airway open. Other treatments are also used for this condition. If you suspect you have this problem, consult a sleep specialist.

Lifting the Fog

Most CFS patients and many people with fibromyalgia experience cognitive difficulties, often called “brain fog” or “fibro fog.” These problems include confusion, difficulty concentrating, fumbling for words and lapses in short-term memory. Like the symptoms discussed earlier, brain fog can have several causes. Use the strategies for those causes that apply to you.

1. Overexertion: Cognitive difficulties can be caused by overactivity and can be reduced by living within the limits imposed by your illness. As one person in our program said, “Brain fog helps me to recognize when I’m outside my envelope. Even if I don't feel tired, the fact that I can’t think clearly tells me that I am beyond my limit. My response is the same as that for other symptoms: rest and pacing.” You may be able to limit the duration of brain fog by responding to it promptly. A rest of 10 or 15 minutes is enough to stop it for some patients.

2. Poor Sleep: The problems associated with fog are found in people who are sleep-deprived. Getting restorative sleep can help limit cognitive problems.

3. Stress and Emotions: Stressful situations and strong emotions can trigger or intensify brain fog. This effect occurs whether the emotion is positive or negative. If an experience triggers adrenaline, it is likely to cause cognitive problems. 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.

4. Multi-tasking: Many patients experience fog when they 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: do only one thing at a time.

5. Over-stimulation: Patients are often sensitive to noise, to light or to sensory input coming from several sources at the same time, for example a TV in the background while you are trying to talk on the phone. Solution: move to a quiet place and avoid distractions.

6. Hunger: Fog may be triggered by lack of nutrition. Solution: when you experience cognitive difficulties, ask yourself when you last ate and whether eating something now would help.

7. Medication side effect: Confusion can be a side effect of some medications. If you think this might apply to you, check with your physician. Also, discuss with your doctor the use of medications to increase attention and concentration.

Other Ways to Minimize Brain Fog
Consider the following additional strategies, which may also help limit brain fog.

1. Pick Your Best Time: Most of us have better and worse times of the day. Do your most important tasks and the ones that require concentration and mental clarity during the hours you are sharpest. The best time of day varies from person to person. For many CFS patients, that time is mid-afternoon to early evening. Many fibromyalgia patients find mornings the best. The important thing is that you find the time that works for you.

2. 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 student said, “When I’m too tired and foggy to think, I put things off until the next day and get extra rest instead.” You can also use the presence of brain fog as a signal to cut back: “If I’m pretty far gone, that’s a sign that I need to cancel some activities.”

3. Use Lists and Other Reminders: Write out your tasks for the day on a To Do list. Organize your house and possessions so that they give you built-in reminders. For example, you might 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. Use Post-It notes in prominent places to jog your memory.

4. Use Routine: Reduce fog by living a predictable life with routines: doing the same things every day in the same way. 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.

5. Organize and De-Clutter: For those who are sensitive to sensory overload (over-stimulation), organizing your house and removing clutter can be a way to control brain fog. One student reported that she has simplified even her clothing, saying, “I have only two colors of socks, one type of shoe (I keep a go-to-town pair and an ‘everyday’ pair) and one sandal and one dress shoe. I wear only two color pants and have only about 6 tops that I trade out. [As a result,] decisions here almost don't exist.”

6. Reframe: Brain fog can be frightening and embarrassing. Many students have told us that they have learned to speak reassuringly or lightheartedly to themselves and to others at times when they lack mental clarity. One said that when she makes a mental slip, she tells people, "I'm practicing for Alzheimer’s.”

7. Do Something Physical: Physical activity is relaxing. It can increase energy and clear your mind. Activity includes exercise and other things such as laughing, singing and deep breathing. One patient said, “The harder I try to control my fog the worse it gets… The very best brain fog reliever for me is to laugh - long and hard - good belly laughs. I also find deep breathing is good. When I sing, I find it also releases the tension that causes brain fog.”

8. Plan Your Response: Deal with the fact that brain fog is confusing by having planning your response ahead of time. Develop rules to guide you when you’re feeling lost, so you have standard, habitual responses you can fall back on. For example, you might decide that you will respond to fog by lying down or by changing to a simpler task.

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 are two examples.

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. My den and paperwork had deteriorated to chaos when I was sicker, and over the last several months I've gotten organized again. 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. If I stay on top of things at home and work, I rarely have to do something immediately. 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.

I believe that the way I organize my life helps me reduce the amount of brain fog I experience and its effects. I try to live a routine and predictable life. Also, I keep an orderly physical environment, so I am not over stimulated by clutter and know where things are. I determined that mid-afternoon to mid-evening were my best times of day for thinking, so use time of day to my advantage. Because brain fog is so disorienting and so frightened, I use self-talk to help me. I say things to myself like, ‘You don't have to balance your check book now; why not do something you can succeed at now and come back to the check book later?’

References

Arthritis Foundation. The Arthritis Foundation’s Guide to Good Living with Fibromyalgia. Arthritis Foundation: Atlanta, 2001.

Caudill, Margaret. Manage Pain Before It Manages You. New York: Guilford Press, 1995.

Hauri, Peter and Shirley Linde. No More Sleepless Nights. New York: Wiley, 1991.

Verrillo, Erica and Lauren Gellman. Chronic Fatigue Syndrome: A Treatment Guide. New York: St. Martin’s Press, 1998.