Sleep deprivation. Normal fatigue in people with MS can be managed by getting adequate rest at night and by napping at strategic times during the day. If you are experiencing insomnia, talk to your physician about medications that will help you sleep. In addition, training programs are available to help you relax and sleep. Many of these programs are offered through local medical centers and may require a referral from your physician. If sleep deprivation is caused by frequent awakening to urinate (nocturia), bladder management should be pursued with your physician. Bladder management strategies are discussed in Chapter 7 in this book, and will assist those of you experiencing problems with elimination to have adequate rest and sleep. In addition, there has been recent evidence that MS can cause sleep disturbance. Therefore, it is important that you discuss your concerns with your physician for appropriate management.
Dietary factors. What you eat fuels your body with energy stores. It is important for you to eat a well-balanced diet to minimize fatigue and maximize function. Good nutrition will also contribute to your skin integrity, your mood, and elimination patterns. (Nutrition is discussed in detail in Chapter 15, "The Role of Nutrition in Multiple Sclerosis.")
Deconditioning. Deconditioning, or lack of activity and exercise, can lead to a loss of muscle tone and aerobic capacity. Aerobic capacity is your ability to sustain activity without becoming tired and unable to complete your task. With guidance from your doctor and your rehabilitation specialist, you can initiate individualized aerobic programs to counteract this type of fatigue (see Chapter 13, "Exercise Options and Wellness Programs").
Fatigue of handicap. Urinary symptoms, bowel problems, incoordination, weakness, spasticity, and diminished capacity for ambulation can force you to adopt less efficient, more energy-consuming approaches to routine activities. Compensating for symptoms may, in turn, result in increased fatigue. Your level of function can be increased if you use assistive devices, such as wheelchairs and motorized tricarts, that conserve your energy. This strategy is called effective energy expenditure.
Depression. Your feelings of fatigue may be worsened by underlying depression. Depression is recognized as a symptom of MS and can also occur if life becomes very difficult when you are dealing with the day-to-day challenges of the disease. If so, feelings of overwhelming tiredness or lassitude may be unrelated to your level of activity and more to your mood. In addition, depression can affect sleep, appetite, motivation, and participation in activities. Such feelings can occur in the morning, afternoon, or evening. They do not appear to occur at any particular time of day; in fact, when you are depressed, you may wake up feeling tired. If you feel that your fatigue is related to depression, ask your physician to discuss what medications you can take to improve your mood. In addition, psychotherapy, stress management, relaxation training, and support groups can help you deal with the complexities of your disease and the symptoms it can cause.
Neuromuscular fatigue. Neuromuscular (muscle tiredness) fatigue is not well understood, but it appears to be the result of the demyelinated nerve fibers using more energy to conduct nerve signals. More research is needed in this area. Physical therapy is particularly useful in improving gait efficiency, decreasing spasticity, and developing an ongoing wellness program for you to follow throughout the week.
Medications such as methylphenidate (Ritalin®), modafinil (Provigil®), amantadine, pemoline (Cylert®; limited use at this time due to reported problems with liver function), or fluoxetine (Prozac®) have been reported to work well for people with MS. Ask your physician about obtaining a prescription for one of these drugs that you can use in conjunction with one or more of the above-mentioned strategies.
In addition, positive experiences, moderate exercise, relaxation, and cooling your core body temperature may reduce your fatigue and increase your stamina. Cooling can be accomplished by taking a cool shower or bath, swimming in cool water, drinking iced fluids, and using an external cooling device. Another important strategy is the use of a wheeled walker with a basket and a seat, reachers in the kitchen, a lightweight wheelchair, or a motorized scooter to conserve your energy at appropriate times.
Consult a physical therapist (PT) or an occupational therapist (OT). A consultation with a rehabilitation specialist (PT or OT) may be helpful in managing your fatigue. PTs can assist you to increase your stamina, improve your balance, and make your walking safer and more efficient. OTs can help you devise a special program to conserve your energy. There may be activities to help you increase your level of function and assistive devices that can reduce the amount of energy you expend doing simple tasks.
Rearrange your routine. You may decide that your daily routine should be rearranged so that you have energy left for later in the day. The following tips can help:
• Do physically demanding activities at a time of day when you feel less tired.
• Allow time to rest and put up your feet.
• Set realistic daily goals for yourself.
• Save your energy for the things that are the most meaningful and rewarding to you.
It is extremely important that you get enough sleep and rest. You may need 8 or more hours each night. If your sleep is interrupted, you may want to evaluate your sleep patterns. Ask yourself the following questions:
• Do I awaken during the night to go the bathroom? If so, why is this happening? Do I need bladder management? Could I have an infection? (Remember that an infection can worsen the symptoms of MS, including fatigue.)
• Am I eating too late in the evening? (A full stomach digesting a meal can interrupt sleep.)
• Am I comfortable at night? Is my bedroom well ventilated? Is my bed suitable?
Because fatigue can also be caused by treatable medical conditions such as depression, thyroid disease, or anemia, or may occur as a side effect of various medications or be the result of inactivity, persons with MS should consult a physician if fatigue becomes a problem. A comprehensive evaluation can help identify the factors contributing to fatigue and develop an approach suited to the individual.
All of these factors play an important role in getting enough sleep. First evaluate, then correct any problems that could be
During the past week, I have found that:
1. My motivation is lower when I am fatigued. Score 1 2 3 4 5 6 7
2. Exercise brings on my fatigue.
3. I am easily fatigued.
4. Fatigue interferes with my physical functioning. Score 1 2 3 4 5 6 7
5. Fatigue causes frequent problems for me. Score 1 2 3 4 5 6 7
6. My fatigue prevents sustained physical functioning. Score 1 2 3 4 5 6 7
7. Fatigue interferes with carrying out certain duties and responsibilities. Score 1 2 3 4 5 6 7
8. Fatigue is among my three most disabling symptoms. Score 1 2 3 4 5 6 7
9. Fatigue interferes with my work, family, or social life. Score 1 2 3 4 5 6 7
Scoring your results:
Now that you have completed the questionnaire, simply add all the numbers you circled to get your total score.
The FSS key:
A total score of less than 36 suggests that you may not be suffering from fatigue. A total score of 36 or more suggests that you may need further evaluation by your physician.
Your next steps:
This scale should not be used to make your own diagnosis. If your score is 36 or more, please share this information with your clinician.
Reprinted with permission from Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD. The fatigue severity scale applied to patients with multiple sclerosis and systemic lupus erythematosus. Arch Neurol 1989;46:1121-1123.
preventing you from getting the rest you need to lead a fulfilling life.
Fatigue is a complex symptom of MS that must be managed in order to promote an optimal quality of life. Set daily goals for yourself. Put energy into the things that are most meaningful and rewarding. Ask yourself questions such as, "Is walking 10 blocks more important than spending time with family and friends?" Then, follow through on the changes required to reduce this symptom.
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