The CFIDS & Fibromyalgia Self-Help Book

Chapter 4:  Treatment Options for Fatigue, Pain and Sleep

Having a long-term health problem like CFIDS or fibromyalgia means managing both illness and its effects on other parts of your life. This chapter focuses on one aspect of illness management: treatment of symptoms. We will focus on the three most common symptoms in CFIDS and fibromyalgia: fatigue, pain and poor sleep.

The approach we’ll take to symptom management is based on two ideas. The first is that when we face a chronic health problem like CFIDS or fibromyalgia, it is often useful to ask two questions:

1) What help can I expect from the health care system?

2) How can I help myself?

Before getting a chronic illness, you may have had a series of short-term illnesses in which it was appropriate to focus on the first question. If medical solutions are readily available, our role in healing can be limited. But the situation with CFIDS or fibromyalgia is different. Unfortunately, there is not yet a cure for either illness. And there is no standard treatment for either one. That is, there is no commonly used medication or procedure that has been shown to be widely helpful. Partial symptom control is possible, but, when successful, is usually achieved by trial and error, and may not be lasting.

Because medical help is often quite limited with CFIDS and of moderate value with fibromyalgia, we are challenged to assume more responsibility for learning how to live well with our condition. With long-term conditions like CFIDS and fibromyalgia, it is often useful to ask both questions: seeking help from the health care system as well as asking what you can do to help yourself. Given the limited medical help often available for these two illnesses, a self-management approach can be particularly useful.

The second key idea to treating CFIDS and fibromyalgia symptoms is the concept of using multiple strategies. Because a symptom often has more than one cause, it may be helpful to use several coping strategies in response. Taking a problem solving approach, you try several strategies to find what works for you. With chronic illness, it is common that some things work while others don’t.

In looking at fatigue, pain and sleep, I suggest that you use a three-part treatment strategy. The first part is to recognize and address the interactions among these three symptoms. Fatigue, pain and poor sleep often intensify one another in a downward spiral. For example, pain worsens both fatigue and sleep. Pain is inherently tiring and also tends to produce muscle tension, which is both fatiguing and painful. Physical discomfort can also make it difficult to get to sleep or to sleep comfortably. Poor sleep, in turn, increases both fatigue and pain. Unrefreshing sleep leaves you as tired in the morning as you were before going to bed. Lack of good sleep also deepens the experience of pain. Lastly, fatigue affects both pain and sleep. Being tired makes pain worse. It may also lead to excessive rest and naps during the day, which make sleep problems worse.

You may be able to break this vicious cycle and create an upward spiral. An improvement in one symptom can have a positive effect on the other two. Probably the commonest symptom to attack first is poor sleep. Without adequate rest, it is difficult to make significant progress on other symptoms.

The second treatment strategy is to combat causes that are common to all three symptoms. Several factors that cause fatigue also worsen pain and make sleep more difficult. These include overactivity, stress, emotions and inactivity. Measures you take in response can have an effect on all three symptoms. This is the realm of self-management, which means adapting our lives and daily habits to find what optimizes well being. Self-management offers a powerful approach to chronic illness. I agree with CFIDS/FM physician Dr. Charles Lapp, who has said: “There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFIDS or FM.”

The third part of our approach is to adopt strategies directed specifically at one symptom.

So, now on to our discussion of fatigue.

Fatigue

Fatigue is the central symptom in CFIDS 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. One cause of fatigue is the illness itself, which uses energy in attempting to heal. But fatigue can have many other causes, including the following factors:

Because fatigue can have many causes, you may benefit from using a variety of coping strategies in response. As described above, one set of strategies addresses the interactions among fatigue, pain and poor sleep. A second set is effective on all three symptoms, because several factors that cause fatigue also worsen pain and make sleep more difficult.

Pacing, which means finding the right balance of activity and rest for your unique situation, is the primary strategy for combating the fatigue due to overactivity. Pacing means understanding your limits and then honoring them. You’ll learn how to determine your limits in Chapter 5, which discusses the concept of the energy envelope. Chapter 6 offers strategies you can use to honor your limits, including setting priorities, taking regular rests, having short activity periods, living by a schedule, and managing special events like vacations and holidays.

Stress is pervasive in chronic illness and intensifies many symptoms. For example, if you are anxious, your worry can lead to muscle tension, which increases both pain and fatigue. Strategies for stress management are offered in Chapter 9. Other sources of stress include the expectations we have for our relationships and for ourselves. Chapter 10 explains how making mental adjustments can reduce stress. Chapter 12 discusses how to improve relationships.

Powerful emotions are part of chronic illness, a response to the disruption of life, to losses and to uncertainty it brings. Emotional reactions may be intensified by CFIDS and fibromyalgia, which seem to make emotional reactions stronger. Chapter 11 describes how to manage depression, anxiety and anger. Chapter 13 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 fatigue. It also helps combat pain, lessens stress and improves mood. Exercise is usually recommended for fibromyalgia patients and may also be helpful for CFIDS as well. For more, see the section on exercise later in this chapter.

Finally, here are some strategies you can use to combat fatigue-specific symptom causes, measures to take in response to poor nutrition and medication-related fatigue.

Good Nutrition: CFIDS 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. Some possible solutions if you have difficulty eating a balanced diet include getting help with food preparation and freezing meals for use on days when symptoms are intense.

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 CFIDS patients and some fibromyalgia patients experience sensitivities to various foods or have difficulty absorbing nutrients. Sensitivity may manifest as one or more of the following: changes in pulse, fatigue, heartburn, gas, nausea, diarrhea and constipation. Individual responses vary greatly. About two thirds of CFIDS patients and many fibromyalgia patients have no new food problems because of being sick, while others may react strongly to certain foods. Unfortunately, there is no common set of foods to which patients are sensitive. One person may respond badly to dairy while another must avoid wheat. The bottom line: if you think you are sensitive to food, you will have to experiment; there is no single “CFIDS diet” or “fibromyalgia diet.”

Some common sources of food allergy include dairy products, eggs, soy, wheat, and corn. The classic way to test for food allergies is the elimination diet. To experiment in this way, first identify foods you think might cause problems. Second, eliminate them from your diet. Third, reintroduce them one by one. Because reactions can take one to several days to develop, you will need records of what foods you eat and what symptoms you experience for a several day period. You may find you cannot tolerate some types of food at all or that you can tolerate a food if you eat it only occasionally.

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

Pain

Pain is usually the central symptom for fibromyalgia patients and often a problem for CFIDS patients as well. Like fatigue, pain can have a variety of causes and is best managed using a variety of strategies. Factors that make pain worse include:

I suggest you manage pain using the same three-part strategy outlined for controlling fatigue:

1) Address the interactions of pain, fatigue and sleep

2) Combat causes common to all major symptoms

3) Pursue pain-specific strategies.

First, explore how fatigue and poor sleep affect pain. 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.

Second, factors that cause fatigue and poor sleep also make pain worse. These include overactivity, stress, emotions and inactivity. Strategies such as pacing, stress management, managing emotions and exercise can help reduce all three symptoms. Exercise, which is discussed in a separate section later in this chapter, can reduce pain by increasing flexibility, muscle tone and endurance. Each of the other three strategies is explored in a separate chapter. Here I’ll outline their benefits for controlling pain.

First we’ll look at pacing. Finding the right balance of activity and rest can help you control your pain. 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 more on rest, see Chapter 6.

Stress reduction in the form of relaxation can help control pain. It is easy to respond to pain by tensing muscles, which intensifies pain. One way to reduce pain is by using relaxation techniques such as those described in Chapter 9. The pain management techniques you’ll find there have been shown to reduce pain as much as some medications, without the side effects.

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.

Another set of strategies for controlling pain through self-management has to do with changing how you think. 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. These feelings intensify pain and trigger another round of negative thoughts. Chapter 10 presents a system for recognizing and gradually changing habitual negative thoughts.

Lastly, there are measures you can take specifically in response to pain. We’ll look at three: medications, physical treatments like heat, cold and massage, and body mechanics.

Medications: For many CFIDS 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 pain relievers such as Ultram (Tramadol) and in some cases narcotics. Prescription medications that improve sleep can have a beneficial effect on pain as well. Anti-depressants such as Elavil (Amitriptyline), Prozac and Paxil are often tried.

Successful treatment of CFIDS 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 effective. 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.

Physical Treatments: 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 are helpful in decreasing 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 even 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.

Body Mechanics: Experimentation with how you hold your body and how you move it can help you control pain. 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 patients find that staying in one position for an extended period of time creates stiffness and intensifies pain. The solution is to move periodically. Check your body frequently for muscle tension. Areas that are often tense 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 tasks that involve repetitive motion, such as chopping, cause pain, experiment to find how long you can work without creating pain and how long you have to pause before returning to work. Then break up the task into several brief sessions. If you have problems standing, consider sitting on a stool.

Poor sleep is one of the most common problems for fibromyalgia patients and also very prevalent among people with CFIDS. With both illnesses, poor sleep is a major source of intensified symptoms. You may spend a night in bed, but awaken as tired as before going 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 sleeping more than you want.

It is widely believed that a major cause of sleep problems, especially for fibromyalgia patients, is abnormal patterns of brain waves. Our brains are active during sleep, moving among several different types of sleep, each with characteristic brain waves. The deepest and most restorative type of sleep is referred to as delta sleep. Patients with CFIDS 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 were deprived of delta sleep in an experiment, they developed symptoms of fibromyalgia in a few days.

Like fatigue and pain, poor sleep can have more than one cause. Factors that make good sleep difficult include:

Sleep is especially challenging because there is no standard remedy that has proven helpful in solving sleep problems for people with CFIDS and fibromyalgia, and because an approach that is effective for a while may become ineffective. For both these reasons, sleep is an area in which a flexible, experimental approach utilizing a variety of strategies can be useful. I suggest you address sleep using the same three-part approach outlined earlier for controlling fatigue and combating pain.

First, look 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 be interfering with your ability to fall asleep. Also, if your activity level leaves you feeling “wired,” pacing strategies may be helpful. Reducing pain before going to bed can help. Many patients find a hot bath or time in a hot tub helpful.

Second, several factors that increase fatigue and worsen pain also make sleep more difficult. These include activity level, stress and worry. Measures you take in response can have an effect on all three symptoms. Because multi-symptom strategies such as pacing and stress management are so important, they are discussed at length in separate chapters later in the book. We’ll outline here their benefits for sleep.

Pacing offers an answer to a sleep-related problem created by too much activity. Some patients find that, contrary to a healthy person’s experience of feeling relaxed after exertion, they are edgy and restless. By keeping your activity level within the limits imposed by your illness, you can avoid the tired-but-wired feeling.

Relaxation methods help you ease tense muscles and thereby may make it easier to get good rest. Try relaxation procedures like those described in Chapter 9 or soak in a hot tub or bath before going to bed.

Last, there are measures you can take that address sleep problems specifically. You can try solving sleep problems by using medications, by experimenting with your sleep habits and environment, and by changing other personal habits.

Medications: Medications can be useful for sleep problems but there is no single medication found helpful for all patients. As with the use of drugs to treat other symptoms of CFIDS and fibromyalgia, you will probably have to experiment to find what works for you. Also, you may develop a tolerance for a drug so that it becomes less effective over time. A sensible approach if you have poor sleep is to find a sympathetic physician who will work with you and to keep abreast of treatment developments by reading publications and visiting websites of leading fibromyalgia and CFIDS organizations.

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.

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

Other Factors Affecting Sleep: You may also be able to improve your sleep by one or more of the following:

Some patients have one or more additional sleeping problems besides insufficient delta sleep. Two of the most common are restless leg syndrome and sleep apnea. The former involves “twitchy limbs,” the experience of 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, the use of exercise involving the legs, and taking supplements to counteract vitamin deficiencies. Medications may help on a short-term basis. 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.

If being ill reduces activity level, leading to deconditioning, greater fatigue, stiffness, anxiety and depression, one way to start a spiral in the other direction is with exercise. Exercise counteracts all these factors. It produces a higher level of fitness, it reduces stress, fatigue and stiffness, and it improves mood. As Edward Hallowell says: “Exercise is probably the best natural antianxiety, antiworry agent we have.... It is an antidepressant, it reduces tension, it drains off excess aggression and frustration, it enhances a sense of well-being, it improves sleep, it curbs the tendency to eat absentmindedly, it aids in concentration, and it reduces distractibility.”

Exercise is recommended for most fibromyalgia patients and may be helpful for CFIDS patients as well. But there are some patients for whom exercise is not likely to be helpful and may even produce a setback. It may be inappropriate for people whose symptoms are particularly severe and is inadvisable when symptoms flare up dramatically. Before starting an exercise program, check with your doctor. He in turn may refer you to other professionals who specialize in exercise, such as physical or occupational therapists.

A comprehensive fitness program includes three types of exercise. Flexibility exercises (stretching) reduce stiffness and keep joints and muscles flexible. Strengthening exercises maintain or increase muscle strength, thereby reducing pain. Endurance or aerobic exercises strengthen your heart and lungs. They help lessen fatigue by giving you more stamina, help improve sleep and mood, and aid weight control. (For detailed exercise programs in each of the three areas, see the Arthritis Helpbook.)

In creating your exercise program, consider the following guidelines.

To evaluate your program and troubleshoot problems, consider keeping a record of your exercise and the consequences. You might record the time and duration of exercise, its intensity and your symptom level before and after. You can note symptoms using a ten-point scale or perhaps letters like L, M and H to note low, medium and high. A diary can help you see the effects of exercise, some of which may be delayed for hours or even days.

The benefits of exercise are greatest for those who exercise regularly, but it can be difficult to work out consistently. Here are some ideas for how to persevere with an exercise program.

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.

Lorig, Kate and James Fries. The Arthritis Helpbook. Cambridge, Mass: Perseus Books, 2000.