Coping with Fatigue
The most common symptom of MS is fatigue. Often described as an overwhelming sense of physical or mental tiredness, fatigue has a major impact on quality of life, interfering with activities of daily living, exercise, and the ability to cope with other MS symptoms. According to some studies, over 90% of those with MS suffer from fatigue, and over three quarters consider it to be one of their three most troublesome symptoms.
Fatigue is frustrating for individuals with MS, their families, and health care providers alike because it is unpredictable. It can last for only a short period of time or for years, and it can be mild or completely debilitating. It does not appear to be linked to age or gender, to how long a person has had MS, or to their level of disability. It is believed to be caused by many factors, including damage to the nervous system caused by the disease itself and the body’s immune system responses, as well as by secondary factors such as pain, sleep disorders, mood disorders, and interferon therapy.
What Is MS-Related Fatigue?
All of us, whether or not we have MS, feel some level of tiredness or fatigue at some point in our lives. The physical and psychological demands placed on us by families, friends, work and school can lead any of us to feel tired. However, the fatigue associated with MS is different from “normal” tiredness. Many MS health care providers report that individuals with MS feel an overwhelming sense of exhaustion and lack of energy that is completely out of proportion to the activities that they are performing.
To the healthy person, errands such as going to the grocery store or the bank are usually not a physical challenge. To individuals with MS, however, the fatigue that they experience can make such simple tasks almost impossible.
Fatigue in MS may take a variety of forms. Physically, it may occur as a loss of endurance that affects activities such as walking. It may also take the form of a persistent, overall lack of energy that is referred to by many health care providers as lassitude. In addition, a form of cognitive fatigue has also been identified: individuals with MS who experience cognitive fatigue have difficulties in sustaining mental functions such as verbal learning, memory, and attention span.
Unfortunately, far too often fatigue is not recognized by health care providers, and goes untreated. There are several reasons for this. Individuals with MS may accept fatigue as a normal part of their life, and feel it is not important enough to mention. Those who have had fatigue for a long time may not comprehend the toll it has taken on their quality of life, and may not realize that they are severely reducing their level of activity to compensate for fatigue. Health care providers may overlook fatigue, believing that the physical signs and symptoms of MS, such as weakness, spasticity, vision problems, and mobility problems, are more important.
Whatever the reasons for the lack of attention to fatigue, it is essential for individuals with MS to understand that fatigue is a real symptom of MS, and as important as any other.
Why is fatigue important?
The impact of fatigue cannot be overstated. Fatigue takes a major toll on functioning, mood, and quality of life. Fatigue severely limits energy and endurance, and has negative effects on mood and the ability to cope with other MS symptoms. Fatigue also plays a significant role in the way that individuals with MS perceive their own health. Fatigue can result in coping problems such as “learned helplessness,” in which people lose faith in their ability to care for themselves.
Fatigue also has a powerful effect on physical activity and physical fitness. Fatigue makes individuals with MS weaker by sharply reducing activity levels. Without activity, the person’s muscles weaken, especially the muscles that are used to breathe. This progressive weakness causes people with MS to further decrease their activity levels, making fatigue even worse, in a vicious cycle.
Managing fatigue: discovering your triggers
One of the most important steps in management is to find out what triggers your fatigue, what makes it worse, and what appears to reduce it. An excellent way to detect patterns of fatigue is to keep a daily activity diary for a brief time period. An activity diary allows you to record your activities on a regular basis throughout the day, describe your sleep the night before, and assess your level of fatigue associated with these activities.
Managing fatigue: adjusting medications
Many medications—in general, not just ones prescribed for MS—can contribute to feelings of fatigue and interfere with daytime functioning. Discuss your medications with your doctor. It may be possible to take sedating medications during the evening, when they will actually help you sleep; some sedating medications, such as antihistamines, also have non-drowsy alternatives. It may also be possible to reduce the dose of certain medications.
Never take these steps without guidance from your prescriber; switching medication times or reducing doses can interfere with the control of other MS symptoms.
Some of the disease-modifying therapies prescribed for MS (in the class of medications called the interferon betas) can cause a flu-like reaction after they are injected that includes fatigue, fever, and chills. This reaction can last several days following the injection, and should diminish over the course of several months as your body adjusts to interferon therapy. The immunomodulator glatiramer acetate, which also reduces MS flare-ups, is not an interferon, and does not produce this type of flu-like reaction. If you are just beginning a disease-modifying therapy and fatigue is a major concern, the fact that glatiramer acetate is not associated with fatigue should be taken into account.
Managing fatigue: eating a healthy diet
Unfortunately, there is no special diet that specifically treats fatigue. However, developing a solid nutrition program can maintain your health, increase your energy reserves, help you sleep better, and reduce your level of tiredness. Here are some important tips.
Avoid refined sugars and other sweets. Excess sugar can dramatically change blood glucose levels, causing them to rise quickly and then crash, making you more tired than before.
Drink at least eight 8-oz glasses of water every day. Dehydration can increase feelings of fatigue, so drinking enough water is essential. Consult with your health care provider if you are having bladder problems; drinking too much liquid can interfere with bladder control while you are sleeping.
Avoid caffeine and tobacco. Both caffeine and tobacco act as central nervous system stimulants and can interfere with sleep. If you drink coffee, make sure that you drink your last cup no later than early afternoon.
Eat nutrient-dense foods. You should make every meal count, eating foods that are high in vitamins, minerals, protein, and complex carbohydrates. High-quality protein (fish, poultry, and lean meat) can help you preserve muscle mass, while complex carbohydrates (such as potatoes, whole-grain foods, and legumes) can help stabilize blood sugar levels, giving you energy throughout the day.
Become a grazer. Eating smaller meals throughout the day instead of three large meals will stabilize your energy levels. Large meals can make you feel tired and lethargic.
Increase your fruit and vegetable intake. Vegetables are high in calcium, magnesium, and potassium, as well as antioxidants, including vitamins A and C. Fruits are also high in vitamins.
Avoid alcohol. Although having a drink on occasion is not harmful, you should avoid alcohol as much as possible. Alcohol depresses the CNS and also interferes with sleep, coordination, and balance. In addition, alcohol can interact with a number of medications that you may be taking for other MS symptoms, so ask your health care provider if you are allowed to drink.
Eat to maintain a healthy weight. Carrying extra weight increases stress on the body and can make you more tired. If you are overweight, follow a reduced fat, balanced diet.
For many individuals with MS, the struggle is not to lose weight but to maintain a high enough weight. Chronic diseases such as MS can cause a state of “high metabolic demand” in which your body has increased nutritional needs. Make sure you eat enough calories to keep you strong. Schedule your meals for times when you feel least fatigued and can eat well.
Ask for help. Always remember that you do not have to make these changes alone. If your fatigue is simply overwhelming, call on family and friends to cook and bring over meals.
Managing fatigue: using energy effectiveness strategies
Energy effectiveness strategies are steps you can take to conserve energy and perform daily tasks more efficiently. An occupational therapist can help you to devise more efficient ways to work, study, perform household chores, and accomplish important tasks.
Take advantage of times when fatigue is mild. Use these times to accomplish important tasks that require sustained energy, such as running errands or cooking. You may be able to identify these times by using your fatigue diary.
Take frequent breaks and pace yourself. Short, 15-minute rests throughout the day can help you conserve energy. However, make sure to avoid frequent napping, which can interfere with nighttime sleep. If you need to accomplish a long and difficult task, such as cleaning the house, pace yourself. If you are at work or school you may want to consult with your employers/teachers about the possibility of scheduling rest periods in your day.
Maintain a regular sleep schedule. Go to bed and wake up at the same times each day (even on the weekends). Maintaining a regular sleep schedule will help regulate your body’s Circadian rhythm (your internal clock) and stabilize your energy levels.
Postpone nonessential activities. It is OK to postpone nonessential activities when you are feeling fatigued. Always keep in mind that you are battling a very real and very disabling symptom of MS. You should never feel guilty for not accomplishing everything on your list.
Do things that help you recharge. Activities such as meditation, yoga, sitting in the park, and walking on the beach can help restore your internal sense of balance and energy, and also reduce stress.
Rearrange your environment. Rearrange your home and work or school environments to conserve energy. Keep the things you use most often within reach.
Ask for help. Figure out a plan for the whole family to get chores and other activities done. If necessary, enlist the help of your health care provider, who can explain to your family how fatigue affects your ability to accomplish tasks.
Managing fatigue: exercise
Exercise has many important benefits for a fatigued person. It increases lung capacity and your body’s ability to use oxygen efficiently. It preserves or increases muscle flexibility, and can reduce pain. It increases strength and energy reserves. It can help strengthen the respiratory muscles (the ones that help you breathe), which become weak from disuse when your mobility is limited. It can also help to relieve feelings of depressed mood, anxiety, and stress, all of which have been linked to fatigue. It can also reduce anger.
Because people with MS have widely varying levels of ability, it is important to consult with your treating clinician before beginning an exercise program. Your clinician can refer you to a physical therapist to devise a plan that fits your level of mobility and physical conditioning.
Managing fatigue: drug therapy
The first steps in treating fatigue should always focus on the non-drug approaches we’ve already listed. However, if you and your health care team have followed these steps and your fatigue remains unmanageable, drug therapy is an important option that should be considered.
There is currently no pharmacologic therapy specifically approved by Health Canada for the treatment of fatigue in the individual with MS. However, there are medications available that have proven useful for reducing or even eliminating fatigue. Talk to your doctor about your options.