To those who do not have MS, it may come as a surprise that the most disabling symptom of MS is fatigue. For those who have MS, this is not at all surprising. Part of the reason that fatigue is so common and potentially disabling relates to the fact that there are many different kinds of fatigue in MS, and it is possible to have none or all of the forms at the same time.

Obviously MS does not protect you from normal fatigue that may occur to anyone. However, a person with MS sometimes may have a ‘short-circuiting’ type of fatigue. This occurs when a limb has a weakness. If it is fatigued, the limb exhibits increased weakness. The limb will recover when the arm or leg is rested, but it may be bothersome when activities require its ongoing use. Repeatedly asking the nerve to perform when it is repeatedly short-circuiting causes fatigue. The judicious use of aerobic exercise (see Chapter 24) may help build endurance, if not strength, and thus may decease this form of fatigue. However, overexercising with weights increases both fatigue and weakness, so a careful balance must be sought.

Management strategies include the appropriate use of exercise and rest, with the understanding that ‘no pain no gain’ is simply wrong and that rest should come before ‘short-circuiting’ fatigue becomes significant.

If a person does not remain active, muscles atrophy and deconditioning occurs. This is another source of fatigue. Maintaining mobility is essential and the appropriate management strategy for this type of fatigue is exercise and maintenance of mobility.

Depression (see also Chapter 26) may be associated with MS and may cause significant fatigue. This may result from not eating or sleeping well or it may be associated with a general feeling of depression. It is essential to recognize that this fatigue is related to depression. It should be managed by aggressively treating the depression with medication and counseling.

The most common fatigue seen in MS is called lassitude. Lassitude is characterized by an overwhelming sleepiness that may come on abruptly and severely at any time of day. This form of fatigue likely is biochemical in origin, and medications that modify brain chemistry may be helpful. Amantidine (Symmetrel) is an example of a medication that affects the nervous system and also has antiviral effects. The newer antidepressants, including fluoxetine (Prozac), paroxetine (Paxil) and sertraline (Zoloft) may be useful for this type of fatigue, even in those who are not depressed. These medications may not be interchangeable with one working better for one person and a different one for another. Lassitude is a bothersome form of fatigue because the person may ‘look so good’ and yet not be able to function. Stimulant medications, including pemoline (Cylert), methylphenidate (Ritalin), and occasionally dextroamphetamine (Dexedrine), sometimes may be necessary. These medications should be used with caution because they may be habit-forming and may lead to agitation. A well-timed nap sometimes is most helpful in managing lassitude. The management strategy for this form of fatigue includes rest and the use of antidepressant and stimulant medications.

Even though fatigue is common and potentially disabling, it is clear that people who have MS are not fragile. Although rest may be helpful, the idea that fatigue leads to increased demyelination has not been proven. The idea that MS progression occurs if a person does not rest a great deal is without merit. You need to listen to your body but there always are times when a little extra push is necessary, but this is not a cause for fear.

Occupational therapists may be helpful in teaching the concept of energy conservation to those who have moderate of severe fatigue of differing varieties. Efficiency in performing activities of daily living, which include dressing, grooming, toileting, eating and so forth, may increase the energy available for other activities.

Principles of Energy Conservation.

• Balance activity with rest and learn to allow time to rest when planning a day’s activities. Rest means doing nothing at all. There is a fine line between pushing to fatigue and stopping before it sets in. Rest improves overall endurance and leaves strength for enjoyable activities.


• Plan ahead. Make a daily or weekly schedule of activities to be done and spread heavy and light tasks throughout the day.


• Pace activity. Rest before you become exhausted. Taking time out for five- or ten-minute rest periods during an activity may be difficult at first but it may significantly increase overall functional endurance.


• Learn ‘activity tolerance.’ See if a given activity can be broken down into a series of smaller tasks or if others can assist in its performance.


• Set priorities. Focus on items that are priorities or that must be done, and learn to let go of guilt that may be associated with not finishing tasks as the result of fatigue.

Minimizing Fatigue by Conserving Energy

The following are some specific suggestions for common tasks and groups of tasks that most of us need to do regularly. They take advantage of the principles described previously and are designed to conserve energy expenditure.

Kitchen and Cooking Arrangements

• Store items that are used most often on shelves or in areas where they are within easy reach, to minimize the need to stretch and bend.


• Keep pots and pans near the stove, dishes and glasses near the sink or eating area.


• Keep heavy appliances such as toasters and blenders in a permanent place on countertops.


• Have various working levels in the kitchen area to accommodate different tasks, and evaluate working heights to maintain good posture and prevent fatigue. Sit whenever possible while preparing meals or washing dishes and use a large stool with casters that roll to eliminate at least some walking. When standing for a prolonged period, ease tension in your back by keeping one foot on a stepstool or an opened lower drawer.


• Use wheeled utility carts or trays to transport numerous and/or heavy items.


• Hang utensils on pegboards to provide easier accessibility.


• Have vertical partitions placed inside storage spaces to permit upright stacking of pots and pans, lids and baking equipment.


• If storage cabinets are deep and hard to reach, use lazy Susans or sliding drawers to bring supplies and utensils within easy reach.


• Use cookware designed for oven-to-table use to eliminate the need for extra serving pieces. Use paper towels, plastic wrap and aluminum foil to minimize cleanup.

• Have good lighting and ventilation in the cooking area.


• Gather items needed to prepare a meal, and then sit while doing the actual food preparation.


• Select foods that require minimal preparation dehydrated, frozen, canned or packaged mixes.


• Use a cutting board with nails to hold items that are being cut.


• Prepare double recipes, and freeze half for later use.


• Use electrical appliances rather than manual ones whenever possible, including food processors, mixers, blenders and can openers.


• Use a microwave oven or crockpot to cut down on cooking and cleanup time.


• Bake rather than fry whenever possible.


• Bake cookies as sheets of squares instead of using shaped cutters.


• Slide heavy items along the countertop rather than lifting them.


• Use a damp dishcloth or a sticky substance such as Dycem to keep a pot or bowl in place while stirring.


• Line baking pans with foil to minimize cleanup, and soak pots and pans to eliminate scrubbing.

• Spread tasks out over a period of time; do one main job each day rather than an entire week’s cleaning at one time.


• Alternate heavy cleaning tasks with light ones, and either get help or break major heavy duty cleaning tasks into several steps.


• Use a pail or basket to transport cleaning supplies from room to room to save on the number of trips back and forth.


• Use adaptive equipment, such as extended handles for dusters or brushes, to avoid bending.

• Wash one or two loads as they accumulate rather than doing multiple loads less often.


• Collect clothes in one place, and transfer them to the laundry area in a wheeled cart if possible.


• If the laundry area is in a basement, plan to remain there until the laundry is done, and have a place to relax while you are waiting.


• If a clothesline is used, have it hung at shoulder-height, and place the laundry basket on a chair while hanging laundry.


• Hang clothes promptly after they are dry to minimize ironing.


• Sit down while ironing.


• Buy clothes that require minimal maintenance.

• Plan menus before going to the store and take a shopping list with you.


• Use the same grocery store on a regular basis, and learn where various items are located for easier shoping; using a Xeroxed master grocery list organized to match the store layout is a simple way to minimize time and energy.


• Use home delivery whenever possible.

• Put beds on rollers if they must be moved or keep them away from walls.


• Make one side of a bed completely, then finish the other side, to minimize the amount of walking involved.


• Organize closets for easy access by making top shelves and clothing rods low enough to reach without straining.


• Use lightweight storage boxes, hanging zippered clothes bags and plastic boxes for items that are needed daily.

• Alternate tasks and incorporate short rest periods to avoid fatigue.


• Keep your garden small and easy to manage.


• Use adaptive equipment, such as handles with extensions, to minimize bending.

• Always use your leg and arm muscles rather than your back muscles when lifting an infant or child.


• Wash, change and dress an infant at counter height.


• Kneel while washing a child in a bathtub.


• Use disposable diapers.


• Adapt the fasteners on a child’s clothing for easier dressing.


• Have the child stand on a footstool while helping him or her dress or wash.

• Arrange your desk and chair heights to facilitate maintaining proper posture, which reduces slumping of the shoulders and neck flexion.


• Use a chair that has good back support.


• Arrange your office so that your file cabinets, computer terminal and other equipment are easily accessible.


• Use small lazy Susans on the desktop for pens, paper clips, tape, stapler and so on.


• Use a phone device that allows the receiver to rest on your shoulder and frees your hands during extended conversations.

• Lay out clothing for the next day before retiring.


• Sit while dressing whenever possible.


• When dressing, dress the weaker side first; when undressing, undress the strong side first.


• Use a long-handled shoe horn.

• Organize shampoo, soaps and toiletries, and keep them together by the bathtub or shower.


• Use grab bars to assist in safely getting in and out of the bathtub.


• Use a tub bench or stool while showering or bathing.


• Always avoid hot water while bathing because it increases fatigue.

References

Reproduced with kind permission from:



Schapiro RT. Fatigue. In: Symptom management in multiple sclerosis; 3rd edition. New York: Demos, 1998 pp25-32.



Available from Demos Medical Publishing, 386 Park Avenue South, Suite 201, New York, NY 10016, USA. Tel: +(212) 683 0072. Fax: +(212) 683 0018