Sandra Schmidt Leach, BSN, MA––Arizona;Trent Maruyama, OTR/L––St. Joseph’s Hospital and Medical Center, Phoenix, Arizona;
Denise I. Campagnolo, MD, MS––Barrow Neurological Clinic, St. Joseph’s Hospital and Medical Clinic, Phoenix, Arizona

Introduction
Fatigue is a common symptom of multiple sclerosis (MS). As many of you know, it is often very difficult to deal with this symptom. Although many drug therapies have shown promise in the treatment of MS fatigue, there is still no universally effective treatment. This is partially due to the complex pathophysiology of MS fatigue that makes it difficult to study. While research in this area continues and new therapies are being tested, however, certain daily strategies already exist that can be used to control, or at least minimize, the effects of MS fatigue. The strategies include rest, cooling, environmental modifications, adaptive aids, body mechanics, and other energy conservation measures that can be incorporated into daily routines and activities of daily living. These strategies can be used alone or in combination with drug therapies to curb the most disabling effects of MSrelated fatigue. Drug therapies have been shown to be helpful, but are not the focus of this review.

Characteristics of Fatigue in MS
Fatigue is experienced by 75% to 89% of persons with MS (Krupp, Alvarez, LaRocca & Scheinberg, 1988; Packer, Sauriol, & Brouwer, 1994; Racke, Hawker, & Frohman, 2004). It can be the first symptom of MS and has been described as a primary cause for leaving the work place (Krupp et al.). Fatigue can interfere with activities of daily living and has been described as distinct from fatigue experienced prior to the development of MS (Freal, Kraft & Coryell, 1984).

Fatigue can be defined as a state with reduced capacity for work following a period of mental or physical activity (Schwid, Covington, Segal, & Goodman, 2002). In everyday conversations, however, patients often use the term “fatigue” to describe a much broader range of symptoms. A complete review of the theoretical causes and measures of fatigue in MS can be found in a 2002 article by Schwid and his colleagues (Shwid et al. 2002). Muscle fatigue in MS was also addressed in the Spring 2004 issue of MSQR. Fatigue is easily confused with other symptoms of MS, such as weakness, spasticity, cognitive impairment, and depressed mood. Since depression is common in persons with MS, it is important to recognize its symptoms and seek help when indicated.

Fatigue related to MS is very unique in nature as it does not relate directly to neurologic disability (Krupp et al. 1988). Since it is sometimes hard for other people to understand what is meant by MS-related fatigue, Krupp and colleagues have created a list of the descriptors commonly used by persons with MS when talking about fatigue (see Table 1). Additional descriptors that the authors have noted are listed in Table 2. It would be useful for all persons with MS to develop their own descriptors for their individual fatigue so that they, and their health care providers, will have a clear understanding as to what is meant.

Fatigue Management Strategies
The rest of this article will focus on practical strategies that can be tried in everyday life. An evaluation by a certified occupational therapist is recommended, as he or she can customize these strategies to your individual needs and help with specific equipment and tasks. The main strategies include: principles of energy conservation; balancing activity and rest; planning ahead; setting priorities; pacing; understanding your activity tolerance;

Table 1. Characteristics Distinguishing Fatigue in Patients With MS and Healthy Controls (based on Krupp et al. 1988).

Heat worsens it
Prevents sustained physical functioning
Comes on easily
Interferes with responsibilities
Causes frequent problems

and work simplification. The last strategy, work simplification, can be further divided into concepts of good body mechanics, elimination of unnecessary motions, efficient use and organization of work space, and so forth. Energy conservation courses have been shown to reduce the impact of fatigue in persons with moderate to severe disability from MS (Vanage, Gilbertson, & Mathiowetz, 2003; Ward & Winters, 2003), but they can also be helpful to everybody with or without MS to enhance daily energy and efficiency levels.

The first step is for the individual to undertake an examination of his/her fatigue in order to identify patterns where they exist. For example, if fatigue occurs or intensifies late in the day, planning the day’s activities so that the bulk of your duties are in the morning may be helpful in accomplishing planned tasks. The next step is to analyze the task to be undertaken. Ask the following questions: Is the task necessary or being done out of habit? Can the task be simplified? Can steps be combined, eliminated, or broken into smaller, easier steps? Can a task or step be delegated? If a task or step is eliminated would it affect the outcome?

It is very important to set priorities. Determine what you want to accomplish in order of importance. Plan ahead, but be flexible in case you need to switch gears. You need to recognize your energy limits and patterns. Be realistic, and don’t abuse bad days or good days. Be prepared to take frequent rest breaks as needed. Come to know what pace is best for you. MS can turn out to be a catalyst to redefining your priorities with the aim of spending your energy on what is most important to you. Remember that by saving small amounts of energy throughout the day, you can gain a lot to spend on the things that are most important to you. “Thimble fulls will add up to a cup.”

Consider the Effects of Emotions
If emotional turmoil and stress bring on and/or worsen fatigue, avoiding unnecessary worry, irritation, frustration, and situations that increase stress is important. Maintain a pleasant environment as often as possible. This doesn’t mean living “in a bubble,” but rather setting priorities about necessary stressful situations versus some battles that “aren’t worth fighting.” Irritation, frustration, worry, and competitive feelings can also waste energy. Remove yourself from stressful situations, for at least short time periods to relax and think through it. Find out what is most peaceful to you, whether candles, soft music, or something else. Include these elements into your day, especially during the most stressful times.

Strategies to Assist With Self Care
First think about what you will be doing that day and then plan sufficient time to complete each task. Avoid leaving everything for the morning by taking care of what you can the night before. Set clothes out ahead of time and sit at the edge of the bed while dressing. Use adaptive devices such as “Sock Aids,” reachers, long handled sponges while bathing, and a back brush for your feet. Choose combs, brushes, and so forth, with light but large handles as they are easier to grip. To create comfortable handles yourself, use pipe insulation (insulation tubing) purchased from a hardware store or simply wrap a wash cloth around the handle and tape it. A terry cloth robe works well to dry your back. For the bathroom, options include elevated toilet seats or commode chairs, safety rails (grab bars), tub bench (shower chair), and a hand-held shower head. Tubs will need non-slip strips, and toilet paper should be relocated to avoid twisting and reaching.

Strategies to Assist With Home Activities
Gather all supplies and position them where they are to be used before starting the first step of the job. Slide filled pans along stove and counter tops instead of lifting them. Leave a favorite pan on the stove top instead of putting it away. Use slotted spoons instead of trying to pour from large pots. Use an electric appliance when possible (i.e., blender, standing mixer, can opener, etc.). Use prepared mixes, frozen foods, or packaged foods. Plan one-dish meals, or prepare food in stages earlier that day or the night before. Prepare extra portions for easy reheating another day. Many casseroles freeze well for those days when meal preparation seems to be too much to accomplish. Use light weight Teflon® or Silverstone® pans and hang pots on the wall, if dust is not a problem. Wear an apron with pockets to carry objects effortlessly. Try to eliminate unnecessary steps. Let dishes drain dry. Automatic dish washers help decrease energy expenditure. Utilize smaller containers for dish detergent. Use paper products when possible. Use placemats instead of tablecloths. Soak pots in hot water and detergent to lessen the need for scrubbing.

When preparing food, sit at a table or on a comfortable stool under a pull-out cutting board. Arrange storage so that frequently used items are on the most accessible shelves. Kitchen aids, such as lazy susans or slide-out trays, bring items to the front of the shelf. Use a rolling cart or large apron pockets to transport items. Again, use smaller containers for bulk items such as flour.

Table 2. Additional Descriptors Used by Persons With MS Describing Their-
Feeling that “the bottom drops out”
Tiredness or need to rest
Sleepiness
Running out of steam
Occurring daily
Worsens as day progresses
Can occur in the morning
Increased by heat and humidity
Unpredictable
Cannot push your way through it

Organize work stations where all supplies are within easy reach. For example, have work stations for baking, frying, fresh vegetable preparation, and drink preparation. If your balance allows, try using a swivel stool to help move between stations organized in a circular fashion.

When cleaning your house use good body mechanics. Use long-handled cleaning aids to minimize bending and reaching. Avoid lifting. Put furniture on casters or sliders so it can be easily pushed. As stated above, use a rolling cart to transport cleaning equipment or anything heavy. Use a light-weight vacuum cleaner. Employ a professional cleaning service on occasion. Keep duplicate cleaning supplies in a two-story house. Avoid tasks that need to be done in an environment that is not temperature-controlled. Save outdoor tasks for milder periods of the day or milder seasons. Take breaks often when doing outside work. Remember to prioritize the tasks and don’t try to do it all in one day. Don’t be afraid to hire help.

Laundry Strategies
Pin socks together before washing. Sort clothes on a table, don’t do it on the floor. Use sinks that are at a proper work height. Sit to iron. Use fabric softener to avoid wrinkles. Use three baskets to collect dirty clothes: to avoid sorting light, medium, and dark colors. Raise front loading washer/dryer on cinder blocks. If your laundry is on a lower level, throw dirty clothes down, and let others carry them back up. Divide heavy products (like laundry detergent) in multiple smaller containers for easy pouring. Use dry cleaners on occasion.

Grocery Shopping
If the service is available, call the department/grocery store ahead of time and reserve a motorized mobility device. Keep a memo pad and pencil in all rooms to keep your shopping list up-to-date. Invest an hour or so to go to your favorite grocery store and list what is in each aisle. Type it up and hang it on your refrigerator and use it as your shopping list. This will decrease “looking for things” and also eliminate visiting aisles that don’t have what is needed. Shop at non-peak hours. Ask baggers not to make the bags heavy and ask for help getting out to the car. Better yet, investigate having the grocery store deliver groceries if they have this service. Use a handicapped placard/license plate. Shop when your energy level is high. Shop for 2 weeks at a time to minimize the little trips, but bring help with you. If you must go alone, you may need to make multiple trips to the car. Make use of grocery carts.

General Office Work Strategies
The purpose of work simplification and energy conservation is to allow you to use your time and energy more efficiently, thus getting the maximum amount accomplished with minimal energy expenditure. The basic principles of “work simplification” are as follows: Use both hands for a task whenever possible. Use good posture. Sit and stand straight, because proper body alignment balances muscles and decreases stress. Sit while working whenever possible to reduce fatigue. Minimize above shoulder level arm movements. Support elbows. Avoid bending, reaching, and twisting. Move your feet to turn your body and bend your knees. Slide rather than lift and use a wheeled cart for transporting things. Push rather than pull items. When lifting, hold items as close to your body as possible and use both arms. Pace yourself for best productivity. Plan rest periods throughout the day, even if it’s just for 5 to 10 minutes. Inhale before lifting and exhale during the lift. To relax, use slow, deep breathing exercises. If you spend a great deal of time talking on the phone, try using a headset. Headsets also allow both hands to be free or ease telephone speaking by using a phone holder. Use a small USB drive storage device to transport computerized work to and from home as needed.

Body Mechanics
Maintenance of proper body mechanics is an important energy conservation strategy. Unnecessary or inefficient motions waste needed energy, where as correct body mechanics save energy. Keep the back straight, store the heaviest objects at waist height. Use your legs and feet to position yourself close to the object to be picked up. Take a moment to think about using body mechanics to maximize energy efficiency. We spend much of our office work time sitting. To sit properly, position your buttocks at the rear of the seat. If you are short you may need a cushion to fill the gap between your buttocks and the back of the chair seat (approximately 2 inches). When properly seated there should be some space between the back of the knees and the chair seat. Lean your spine against the back of the chair to relax muscles in the spine. Hips and knees should be at 90-degree angles. If your chair is equipped with a lumbar support, adjust it to fit the curve in your lower back. A towel rolled up can be used as a lumbar support. Make sure the armrests are positioned to support the weight of your arms when you are at rest. This allows the neck and shoulders to relax. A footrest can help you maintain good posture. Position the footrest so the knees are level with the hip joint. Avoid sitting for prolonged periods of time. Get up, walk, and stretch.

Strategies at the Computer Workstation
Your aim at the computer is to work in a position that is “ergonomically correct.” Work directly facing the desk or computer. The monitor should be at eye level and visible without turning the head or body. A document holder attached to the side of the monitor can make typing text documents easier on your neck. An articulating arm can be used to house the keyboard at the correct height and can be easily pushed to the side when not needed. Additional strategies on body mechanics are listed in Table 3.

Pace of Work/Activities
The pace of work is important in managing fatigue. Use a day-timer/organizer to carefully schedule activities and keep track of work schedules. If you are comfortable with a personal digital assistant (PDA) to store pertinent information, you can use it as a lighter option than a laptop computer or paper organizer. Scheduling breaks in the day or week breaks will allow recovery. Keeping track of work hours, and not scheduling consecutive evening activities may be helpful. Inquire about options such as “job sharing” and consider part-time employment if financially possible. Ask your employer about telecommuting or working from home. Organizing errands, not trying to do all of them in one evening, and utilizing drive-thru options as much as possible will maximize your efficiency. Utilize others, ask for help and divide up the “To Do” list. Work and move at a moderate pace. Avoid sudden bursts of activity. Remember, “slow and steady wins the race.” To avoid getting tired, take frequent, short rest periods while you are walking, instead of a long rest period after you get tired.

Use slow, flowing motions rather than fast, jerky movements. Plan ahead to avoid having to rush. This allows you to work at a relaxed pace. Alternate light and heavy work throughout the day and week. To avoid unnecessary steps, wear a pedometer and measure the steps taken through certain paths. Pedometers provide useful step count information so that a decision can be made as to which path is most efficient to take (Welk, Differding, Thompson, Blair, Dziura, & Hart, 2000).

Plan Leisure Time
Plan and don’t leave leisure time to chance. Planning will lessen the occurrences of over committing. Keep a family calendar and have the whole family participate in planning leisure time to be spent as a family. Select activities that are leisurely. Be flexible determining your priorities. Talking them over with the family will really help.

Table 3. Additional Strategies on Body Mechanics.
Use a small pocketbook/purse–the bigger it is, the more stuff we carry.
Backpacks are better than briefcases.
Canvas is better than heavy hard-sided briefcases.
When climbing steps, look at the top rise, not the next step.
This promotes good posture.
Don’t use your heels to pull your desk chair forward.
Use a desk pad under your chair.

Work Heights
Use work surfaces at a level that allow you to work without bending or raising your hand above the elbow. Adapt counter space or use a lapboard for patients with wheelchairs. Order desk arms (flip away arm rests) to allow an individual with a wheelchair access to appropriate tables. Use a book stand or music stand to hold books.

Energy Expenditure Levels
Consider that fast walking takes one and a half times as much energy as slow walking (Gunn, 2002). Furthermore, going up stairs can cost up to seven times as much energy as walking on level ground (Jeng, Chang, Wai, & Chou, 2003). Considering these energy costs in advance will help you to mix the more costly activities with lighter activities throughout the day and get them done when your energy level is optimal.

Driving Strategies
Pay attention to your fatigue, stiffness, and comfort level after driving. An automatic transmission is preferred over manual transmission. Make sure your air conditioner is in good working order. Avoid a lengthy static grip on the steering wheel. Stop and rest often and stretch outside of the car. Use different sets of “car toys” to entertain the kids during the ride and rotate the set to maintain their interest and your sanity. Be aware of your body mechanics when entering and exiting your vehicle. Ask yourself whether the car seat is at the proper height or whether you have to “climb” in and out, which requires more energy.

Diet and Exercise
We advise a good healthy diet. Dietary considerations in MS are addressed in another article in this issue of MSQR (see pg. 10). In general, you should be attuned to your own energy level in relation to what you are eating and when. Further, fatigue management doesn’t mean to not exercise. Moderate exercise done wisely is beneficial to most persons with MS, but should be attempted under the supervision of your health care professional. Exercise recommendations were reviewed in the Spring 2004 issue of MSQR.

Temperature Sensitivity
Most persons with MS report sensitivity to heat. The reasons for the tendency of elevated body temperatures to increase MS symptoms and signs are not entirely understood. In animal experiments, when the temperature of nerve preparations is steadily increased there is more failure of nerve conduction through areas of demyelination. These effects are commonly assumed to be caused by changes in temperature around the damaged nerves, but it is also possible that cooling works by changing the chemicals involved in inflammation (Schwid et al., 2003). High humidity levels may affect the individual event more than hot temperatures and should be avoided if possible. Assistive devices such as personal “misters” filled with ice water, cooling neck collars and vests are also commercially available. Cool the car before you get in if possible and use car window shades. Also, by applying body lotion to your arms and then allowing the air conditioner to blow on the arms helps while the car cools down. Chew ice chips, have an iced drink with you for travel. Cool bath/showers and pool temperatures are helpful. Some people with MS are sensitive to hot foods, so you need to test this possibility. You need to assess your individual heat sensitivity. In hot environments light-weight clothing is a necessity.

Attitude
The greatest disability is the disability of discouragement. Although the fact that one has MS still cannot be changed, what can be changed for the better are attitudes and motivations. Most people living with MS point out that they are not the disease, and that allowing the disease to limit their happiness, their potential to reach their goals or to contribute to the world they live in would be the greatest loss. Using every possible strategy to control the “fatigue aspect” allows you to better control the disease. We hope that the strategies discussed above will give you an advantage in minimizing at least some of the limitations imposed by MS.

References
Freal, J., Kraft, G., & Coryell, J. (1984).
Symptomatic fatigue in MS. Archives of Physical Medicine and Rehabilitation, 65(3), 135-138.

Gunn, S., Brooks, A., Withers, R., Gore, C.,
Owen, N., Booth, M., & Bauman. A. (2002).
Determine energy expenditure during some household and garden tasks. Medicine and Science in Sports and Exercise, 34(5), 895-902.

Jeng, C., Chang, W., Wai, P., & Chou, C-L. (2003).
Comparison of oxygen consumption in performing daily activities between patients with chronic obstructive pulmonary disease and a healthy population.
Heart and Lung, 32(2), 121-130.

Krupp, L. B., Alvarez, L. A., LaRocca, N. G., & Scheinberg, L.C. (1988).
Fatigue in Multiple Sclerosis.
Archives of Neurology, 45,435 -437.

Packer, T.L., Sauriol, A., & Brouwer, B. (1994).
Fatigue secondary to chronic illness: Postpolio syndrome, chronic fatigue syndrome, and multiple sclerosis.
Archives of Physical Medicine and Rehabilitation, 75, 1122-1126.

Racke, M., Hawker, K., & Frohman, E. (2004).
Fatigue in multiple sclerosis. Is the picture getting simpler or more complex?
Archives of Neurology, 61, 176-177.

Schwid, S., Covington, M., Segal, B., & Goodman, A. (2002).
Fatigue in multiple sclerosis: Current understanding and future directions.
Journal of Rehabilitation Research and Development, 39(2), 211-224.

Schwid, S. R., Petrie, M. D., Murray, R., Leitch, J. Bowen, J. Alquist, A., Pelligrino, R. et al.
(NASA/MS Cooling Study Group).(2003). A randomized controlled study of the acute and chronic effects of cooling therapy for MS. Neurology, 60(12), 1955-60.

Vanage, S., Gilbertson, K., & Mathiowetz, V. (2003).
Effects of an energy conservation course on fatigue impact for persons with progressive multiple sclerosis.
The American Journal of Occupational Therapy, 57, 315-323.

Ward, N., & Winters, S. (2003).
Results of a fatigue management programme in multiple sclerosis.
British Journal of Nursing, 12(18), 1075-1080.

Welk, G., Differding, J., Thompson, R., Blair, S., Dziura, J., & Hart, P. (2000).
The utility of the Digi-Walker step counter to assess daily physical activity patterns.
Medicine & Science in Sports and Exercise, 32(9), S481-488.

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