FATIGUE, DIGGING FOR CLUES

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FATIGUE, DIGGING FOR CLUES
Copyright 1995 National Multiple Sclerosis Society

UNDERSTANDING TYPES OF FATIGUE MANAGING FATIGUE General Guidelines

SPECIFIC SUGGESTIONS

Dr. Lauren Krupp is working on a provocative idea shared by other scientists in her field: that there is some immune or neuroendocrine
abnormality caused by multiple sclerosis that explains the overwhelming fatigue that afflicts 80 to 90 percent of people with MS.

The Society grantee, who is associate professor of neurology at the State University of New York at Stony Brook, hopes ultimately to find biochemical changes in the blood or an alteration in the immune response that can match up with a patient's degree of fatigue.

What is so special about MS fatigue? Dr. Krupp defines it as "a sense of tiredness, a lack of energy, really a total body give-out. It's not
weakness; instead, it's a generalized low-energy feeling. The fatigue is not related to depression.

Almost all patients find their fatigue gets much worse on a hot and humid day; and many people say the fatigue makes other MS symptoms worse."

Dr. Krupp and her co-workers have compared MS fatigue with fatigue in people with systemic lupus erythematosus (SLE) and other medical illnesses, and healthy controls. They found MS fatigue had a harmful impact on daily living and was greatly worsened by heat.

Dr. Krupp's extensive interviews showed that fatigue results in loss of patience and lowering of motivation for healthy people and people with MS alike.

Some things that help healthy people -sresting, sleeping, positive experiences - work well for people with MS too.
Things that worsen fatigue - stress, physical activity, the late-afternoon doldrums - also have the same effect on both groups.

The small proportion of people with MS who don't suffer from MS fatigue seemed to answer Dr. Krupp's questions in the same way healthy people did. The feature that sharply distinguished MS fatigue was the impact it had on activities of daily living.

"With healthy people, fatigue does not interfere with social, family or professional responsibilities," the clinician commented. "In contrast, 67
percent of MS patients said that fatigue alone prevented them from meeting their responsibilities. Some 89 percent said that fatigue alone prevented sustained physical activities."

Some doctors unfamiliar with MS may ascribe patients' fatigue to depression, Dr. Krupp says. But she found otherwise. "We looked at the question in a statistical way, trying to see how well fatigue matched depression.

That is, if somebody with MS was very depressed, was that a good indicator of fatigue? Or if someone was not depressed at all, would that mean there was no fatigue?" It turns out neither one correlates strongly with the other: MS fatigue may overlap with depression but it is clearly a different symptom.

Recently a multicenter study compared the nervous system stimulant pemoline (Cylert) with an antiviral drug called amantadine (Symmetrel) and an inert dummy pill_a "placebo". Almost all the people studied reported less fatigue, including those who took the placebo.

However, the group treated with amantadine had a somewhat greater fatigue reduction than the placebo group. Both drugs were very well tolerated and caused few side effects.

The study concluded that more effective fatigue treatments need to be identified, but, in the meantime, both pemoline and amantadine are reasonable drug therapies. Still, only amantadine appeared to be superior to a placebo.

The study also concluded that in MS, problems with mood and cognitive function are not related to fatigue. With the help of Drs. David Masur and Martin Sliwinski at Albert Einstein College of Medicine, Bronx, N.Y., the investigators found that changes in fatigue levels were not associated with changes in mood or cognitive functioning.

Fatigue must be viewed as a separate symptom, which might overlap with other MS symptoms but is essentially a distinct entity.

Dr. Krupp and Dr. Patricia Coyle are working on measurements of cytokines and immune complexes in blood and spinal fluids to see if these substances, which indicate immune system activity, can be correlated with MS fatigue.

"Until we can relate such measurements to the fatigue people experience, we are missing part of the equation," Dr. Krupp says.

Immune studies are still in progress at Stony Brook. Ultimately, Dr. Krupp and her colleagues hope to combine findings in neurological, psychological, and immunological research to develop greater understanding and more effective approaches to relieving or preventing this major MS symptom.

(Reprinted from "Symptom Management in Multiple Sclerosis", 2nd Edition, by Randall T. Schapiro, M.D., c1994 Demos Publications, New York.)

Fatigue is one of the most common problems for people with MS. It is a difficult problem for others to understand, since it is not manifested by a highly visible symptom.

However, it can often be treated once its cause has been determined. Four specific types of fatigue are seen in MS, and sometimes more than one type is found in a single individual:

- Fatigue #1 is the tired feeling that everyone has after working hard. It is a natural type of fatigue and implies a good day's work rather than
anything negative medically. Obviously a good night's rest is the solution to managing this normal type of fatigue.

- Fatigue #2 is the "worn out" feeling that occurs when a person is depressed. Depression often causes poor appetite, sleep disturbances, and feelings of poor self-worth. It is treated with anti-depressant medications and counseling or therapy.

- Fatigue #3 can best be illustrated by visualizing a person with MS who has a slight limp after walking one block, drags the leg after the second, and needs to stop after the third. Fatigue results because the nervous impulses that control the leg muscles are worked beyond their capacity. It is called"short-circuiting" fatigue. The best way to manage it is to allow for appropriate rest periods.

- Fatigue #4 is a lassitude that is unique to MS. "MS fatigue" is an overwhelming fatigue that can come at any time of day without warning, so suddenly that one may in fact fall asleep. The drug Symmetrel (amantidine) manages this type of fatigue, although the manner in which it works is not yet understood.

Stimulants such as Cylert (pemoline) and Ritalin (methylphenidate) may provide relief, but they may cause difficulty in sleeping. Prozac
(floroxitane) appears to have excellent anti-fatigue properties without significant side effects.

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 becoming exhausted. Taking time out for five- or ten-minute rest periods during an activity may seem difficult at first, but it can 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 associated with not finishing tasks as the result of fatigue.

- Sit while dressing whenever possible.
- When dressing, dress the weaker side first; when undressing, undress the strong side first.
- Always avoid hot water while bathing, since it increases fatigue.
- Organize shampoo, soaps, and toiletries, and keep them together by the bathtub or shower.
- Arrange your office so that your file cabinets, computer terminal, and supplies are easily accessible.
- Use small lazy Susans on the desk top for pens, paper clips, tape, stapler, and so on.
- Use a speaker phone or a device that allows the receiver to rest on the shoulder during extended conversations.
- Use wheeled utility carts or trays to transport numerous and/or heavy items at home or at work.
- Permanently place heavy appliances such as toasters or blenders on countertops.
- Have various working levels in the kitchen area to accommodate various tasks and valuate working heights for maintaining good posture and preventing fatigue.
Sit whenever possible while preparing meals or doing 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 the back by keeping one foot on a stepstool or an opened lower drawer.
- Gather items needed to prepare a meal, then sit while doing the actual preparation.
- Use electrical appliances rather than manual ones whenever possible, including food processors, mixers, blenders, and can openers.
- Bake rather than fry whenever possible to minimize standing.
- Slide heavy items along the countertop rather than lifting them.
- Use a damp dish cloth or a sticky substance such as Dycem to keep a pot or bowl in place while stirring.
- Alternate heavy housecleaning tasks with light ones, and either get help or break heavy cleaning tasks into several steps.
- Plan menus before going to the grocery store, and take a grocery list with you.
- Use the same grocery store on a regular basis, and learn where various items are located for easier shopping; a xeroxed master grocery list organized to match the store layout can be a simple way to minimize time and energy.
- Use home delivery whenever possible.
- Organize closets for easy access by making top shelves and clothing rods low enough to reach without straining.
- Always use leg and arm muscles rather than back muscles when lifting an infant or child.
- Have a child stand on a footstool while helping him/her dress or wash.

Updated from an article in the Fall 1989 issue of INSIDE MS.

SOURCE: NMSS Information Resource Center and Library. EDUCATION DEPARTMENT,
New York: National Multiple Sclerosis Society, c1995.

SOURCE: (Reprinted from "Symptom Management in Multiple Sclerosis", 2nd
Edition, by Randall T. Schapiro, M.D., c1994 Demos Publications, New York.)

DISCLAIMER: The National Multiple Sclerosis Society is proud to be a source
of information about multiple sclerosis. Our comments are based on
professional advice, published experience and expert opinion, but do not
represent therapeutic recommendation or prescription.

For specific information and advice, consult your personal physician. To
contact either the Information Resource Center and Library of the NMSS, or
your Local Chapter, call 1-800-FIGHT MS (1-800-344-4867).

Transmitted: 95-08-23 17:43:30 EDT

*UNDERSTANDING TYPES OF FATIGUE*	MANAGING FATIGUE General Guidelines
SPECIFIC SUGGESTIONS