Treating CFIDS & Fibromyalgia

Strategies for Fatigue

(First in a series on treatment options for major symptoms of CFS and fibromyalgia. Other articles discuss pain, poor sleep and cognitive problems.)

By Bruce Campbell

Having a long-term health problem like CFIDS or fibromyalgia means learning to live with symptoms that persist. But the absence of a cure 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 disease, they can reduce the effects of symptoms and improve quality of life.

This series discusses the major treatment options for four of the most common symptoms of CFS and fibromyalgia: fatigue, pain, poor sleep and cognitive problems. The view of treatment you find here is based on three principles.

• Focus on Feeling Better: Because so far there is no cure for either CFS or fibromyalgia, focus on finding things to help you feel better and to give you greater control. The strategies described in this series can help reduce pain and discomfort, bring greater stability, and lessen psychological suffering.
  
   

• Multiple Strategies: Because most people with CFS and fibromyalgia have more than one symptom and because a given symptom often has more than one cause, it is usually helpful to use multiple coping strategies. These strategies often include both medications and self-management approaches such as pacing, stress management and exercise.
  
   

• Experimentation: Finding the most helpful combination of treatments often requires experimentation. Because patients are different and because there is no standard treatment for either CFS or fibromyalgia, symptom control is usually achieved by trial and error. Some approaches work better at some times than at others or for some people better than for others. If one strategy doesn’t work for you at some point, try another.

Medical treatments for CFS and fibromyalgia can be useful for most patients, but using medications for CFS and FM can be frustrating, because there is no standard treatment for either illness. That means that there 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, such things as pacing and stress management, have several advantages over medications. Such strategies 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 CFIDS or FM."

Treating 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 you with less energy for your daily activities. In other words, CFS and fibromyalgia impose limits. Perhaps the single most important key to controlling fatigue and the other symptoms of CFS and FM is to adjust your life to those limits. Living successfully with CFS or fibromyalgia requires many practical adaptations. Most patients are willing to make adjustments to their daily routines only after going through a psychological adjustment: acceptance that life has changed on a long-term basis. 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 that you 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."

We call this different mode of being "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. The process of accepting limits and learning to live a different kind of life usually takes several years. Part of the challenge is psychological, adjusting to the losses and learning to see your life in a new way. Another part is practical: 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.” You will find articles about defining your energy envelope and pacing on page titled "Energy Envelope and Pacing." For ideas on coming to terms with loss, see "Move Beyond Loss to Build a New Life."

Fatigue can also be intensified by 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 is both fatiguing. 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 articles in the series 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 commonest symptom to attack first is sleep.

Other causes of fatigue include:

• Too Much Activity: Overactivity intensifies symptoms, often leading to cycles of push and crash.
  
   

• Stress and Emotions: Stress leads to fatigue when energy is spent in worry and lost to muscle tension. Fatigue is a symptom of depression.
  
   

• Too Little Activity: A lowered activity level produces deconditioning, which makes activity more tiring.
  
   

• Poor Nutrition: Poor quality of insufficient food, digestive problems and food allergies all contribute to fatigue.
  
   

• Medication Side Effects: Many drugs create fatigue.

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 CFIDS/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 "Finding Your Energy Envelope, Part 2.". 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 like vacations and holidays. For more on pacing, see "Pace Yourself"

You can find relaxation and other stress management strategies in our "Stress Management" archive. Because stress is so pervasive in chronic illness and because it intensifies other 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 improve 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. "Honor Your Emotions" describes how to manage depression, anxiety and anger.

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. 

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.

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.