Every introductory article on Multiple Sclerosis (MS) that I've read mentions that
many people with MS get fatigue. Health care professionals usually are informed about this effect of the disease as well.
Despite this recognition, fatigue has not been taken as seriously nor viewed as profoundly as what the experience of people
with MS merits. Fatigue is a symptom of MS. But it is much more than that. Fatigue underlies and influences many of the other
symptoms experienced by people with MS.
The brain's myelin-covered nerve cells send commands and information from one part
of the brain to another or to other parts of the body. The essential mechanism of MS is that this communication is impeded
or blocked by the destruction of the myelin sheath that surrounds and insulates the cells. These communication cells serve
as the superhighway to make messages travel quickly and easily. When the myelin has been destroyed or damaged, the information
must bully through on less efficient channels, not ideally constructed for the task. It is like getting from New York to Washington
without driving on I-95. Depending on the locations and number of these myelin depleting lesions, communication within the
brain may be profoundly disrupted. As happens with any drive that lasts too long, fatigue is one of the results.
Fatigue is both a mental and a physical experience. Fatigue may be evident, because
of the feeling of general tiredness, but it also can be overlooked. It can show itself immediately or, at times, it can be
delayed for days. Like everything else about MS, it is highly variable from one person to the next. The primary treatment
for fatigue is rest.
Physical fatigue often is experienced as a bone-numbing tiredness. It is a tiredness
that belies description. It can make movement seem impossible and the requirement for movement overwhelming. Fatigue is to
blame when someone with MS can walk without visible difficulty in the morning and by evening need a wheelchair or may be unable
to get around at all. It is also fatigue that can make one's capability on one day differ dramatically from another.
Attempts to classify types of MS fatigue have not reached a developed consensus
among researchers. Regardless of the type, there is universal support that the fatigue experienced by people with MS goes
beyond that of people without the disease. While it may be seductive to think that the fatigue of someone with MS is merely
an exaggeration of normal fatigue, MS fatigue is qualitatively different. It is oversimplification to say that a shopping
trip for someone with MS is like running a marathon, or that a day at the beach resembles climbing Mt. Everest. The experience
of neurological fatigue is unique.
This fatigue is also highly variable. There are some with MS who do not experience
fatigue as a primary symptom. Someone can have profound gait disturbances and no fatigue, or paralysis or complete numbness
of a limb without experiencing unusual tiredness.
This is because the location of MS lesions vary significantly. The accident of
a small, strategically placed section of myelin loss can cause the complete isolation of a section of the body from the brain.
It cannot respond to the brain's commands. The rest of the nervous system may have little or no damage and require no more
energy than usual.
For most people with MS, the random lesions do not initially hit such critical
places and the diagnosis of the disease comes after numerous lesions occur throughout the brain and spinal chord. This accumulation
of lesions -- the multiple potholes and cracks in the superhighway system -- leads to the physical fatigue experienced by
so many with MS.
Mental fatigue is less well understood. There have been studies of cognitive and
memory difficulties of those with advanced MS. These studies show that thinking can be disturbed and that fatigue clearly
has a disruptive effect. What is known experimentally has confirmed what people with MS have known for a long time: lesions
in the communication pathways interfere with thinking as well as movement.
For someone with MS, the quality and speed of thinking can be as variable as his
or her walking habits. Someone who can do complicated mathematical permutations on Monday morning may be unable to calculate
his mileage by Friday afternoon. Following directions with multiple steps and decision points can seem simple when a person
is rested, but it can be an impossible task, requiring many repetitions or copious notes, during a period of fatigue. Simple
facts and figures may be effortlessly retrieved, but impossibly remote later after activity. While MS can disturb memory or
thinking directly, when such changes occur within a day or week they are the result of fatigue.
Mental exertion for someone with MS can carry consequences far beyond what would
be expected under normal conditions. Balancing a checkbook may result in fatigue more appropriate to that of a day's worth
of accounting. Though less studied than physical fatigue, the quality of mental fatigue is likely to go beyond what is typically
experienced by people without the disease.
As with other aspects of MS fatigue, mental fatigue is highly variable. Depending
on the placement of the lesions in myelin, one's thinking can be completely unchanged or, alternately, a disturbance of one's
thinking can be the only symptom experienced. One's experience of fatigue depends on many variables: the location of lesions,
the number of lesions, the degree of effort exerted by one's normal tasks, one's original intellectual capacity, the degree
of physical exertion and resulting fatigue that accompany one's mental chores, and the many other unique factors that influence
the attributes and the course of the disease for each person with MS.
Another odd attribute about the fatigue that many people with MS experience is
that it sometimes does not go away with just one night's rest. In my personal experience I've found that when I have reached
states of deep fatigue, it is after a second day of rest that I truly begin to feel rested. This has been echoed by others
with MS. While one can press oneself to a degree, the recovery time for extreme fatigue can last longer than a rest of one
or two days provides. A period of days may be required to recover from a particularly fatiguing experience or series of experiences.
Similarly, fatigue can be cumulative. While one may be able to handle a busy day without much difficulty at times, two or
three busy days in a row can lead to fatigue that goes beyond one's normal baseline.
There are some people with MS who believe that they have triggered relapses or
discrete new episodes in the disease by overdoing or inducing extreme fatigue in some way. There is some research to support
this, although it is not conclusive. What is conclusive is that one's chronic symptoms do get worse during periods of fatigue.
There is more numbness, more clumsiness, more forgetting or difficulty concentrating. People with MS can get increased muscle
pain or even increased muscle spasms as fatigue increases. Whatever the chronic symptoms of an individual's MS may be, they
worsen with fatigue.
The influence of fatigue goes a step further. It is true to say that when people
are tired they don't want to do anything and they may be unable to perform up to standard. People with MS don't just get tired
more frequently and more quickly and more profoundly than others. They also have to live with being tired a far greater percentage
of the time.
Living with fatigue means having to cope with its unpleasant effects. Consider
a tired child. How would you describe him or her? Grouchy, sullen, distractible, easily hurt, snippy, pessimistic, immature,
picky, needy, demoralized, testy, easily pushed to anger or tears, remote, more prone to worry... These and many other things
are often accurate. A tired child has more trouble concentrating. A tired child has no ambition. A tired child is a far different
animal than what he or she was, sometimes just hours earlier. Then the child was cheerful, full of pep, precocious, smart,
focused, impervious to criticism, immune to damage.
How these many moods and attributes are reflected by any one child or any one person
with MS varies according to one's particular personality. But the effect of fatigue on the overall experience of life is profound.
When someone is operating while fatigued, even when that someone is an adult, his or her experience changes dramatically.
Moods become low. Demoralization can set in. Negative thoughts seem more realistic. Requests from others seem more intrusive.
Small worries can become major anxieties. Kind suggestions can feel like hostile criticism. What seemed like a simple task
just hours ago appears now to be a burden or an imposition.
During times of fatigue everyone is less of themselves. People are moodier and
snappier. They may be more prone to tears or tirades, and they are often more easily hurt and less hesitant to hurt others.
When tired, people are less in control of both thoughts and emotions. When fatigue states become extreme, moods can look labile
or highly fluctuating and out of control.
Not only are the bodies and minds of people with MS prone to fatigue, but that
fatigue compounds itself to test normal human resiliency and make it less accessible, leaving the person with MS struggling
to meet the challenges of the disease with lowered spirits and undermined resolve.
This experience is not depression and it is not anxiety. It is fatigue. This is
not to say the people with MS don't get depressed or anxious. The opposite is certainly true. Nor does it mean they can't
learn to increase their ability to cope with the effect of fatigue. People with MS often get psychological symptoms and they
can learn to deal with both the depression and with the anxiety that often accompanies the experience of being sick with a
exhausting and unpredictable disease. But fatigue must be separated from these things because it will not respond to treatments
for psychological disorders.
Physicians have attempted to treat fatigue with medication. A variety of stimulants
were tested and demonstrated to improve the energy levels of some people suffering MS fatigue. These medications, along with
their effects, can be discussed with your neurologist. Not everyone benefits from these medications. For some they provide
only a partial improvement in the level of energy or offer unpleasant side effects.
More effective is the treatment one can get without a doctor's prescription: rest.
The need for rest and one's ability to discipline oneself to rest enough is as
highly variable as every other attribute and symptom shared by people with MS. For many with MS in its early stages or during
periods of remission, a general increase in the restfulness of one's environment may be sufficient to allow for an approximation
of normal activity: taking a restful lunch instead of running errands or exercising; reading or watching movies on days off;
modulating one's social calendar, as some examples.
The environment also can be changed or modified slightly. Better seating at home
or at work might be provided. Within a family, chores can be re-divided to give more sedentary tasks to the one with MS. At
work, job descriptions can be altered to provide for a reduced demand for physical energy. Work can be organized to leave
the less demanding tasks for the end of the day and week.
Many times such slight changes are effective at decreasing the severe fatigue suffered
in MS. Frequently, more dramatic changes are needed. Fatigue may be reduced much more significantly if more aggressive changes
are made. Taking a two-hour lunch or taking a nap in the afternoon are some examples. Parents with children may need to send
them to day care just so they can get enough rest. Jobs that require regular physical exertion may have to be replaced with
jobs that allow sitting most of the day. More painfully, some people don't find that they can manage the most profound fatigue
until they retire or semi-retire from their full time jobs.
Often, no amount of environmental change is sufficient to relieve the fatigue experienced
by those with MS. Yet, there are things to do to make the effect of fatigue less painful or damaging. People with MS benefit
substantially by building a repertoire of sedentary activities that can be enjoyed regardless of any level of fatigue. This
means more than watching TV. This can include reading, writing, puzzle solving, computer games, meditation, listening to music
or books on tape, talking to friends on the phone, surfing the Internet, learning to speak another language, memorizing the
birds of the Amazon -- the list is endless. This is more difficult for some than for others. Those who most enjoy active invigorating
physical recreation may have more difficulty adjusting to a regimen of rest than in modifying their activities.
The people who surround a person with MS can also be trained to serve as a buffer
against exhaustion. In addition to taking on more physically demanding chores (or all of the chores, at times), one's
loved ones can become sensitive to timing and important signals. Discussions of important decisions can be delayed to those
times of maximum cognitive energy. The requirement of last minute cancellations of strenuous events can be treated with respect
and understanding. For many people with MS it is the significant other that notices the first signs of an impending time of
fatigue and may take steps to get to back to home and hearth.
Ways of communicating about fatigue may have to be developed within a family. As
with anxiety and pain, fatigue can be rated. If one rates the worse experience of fatigue as a ten and the complete absence
of fatigue as a zero, one can then compare current fatigue states to those previously experienced. Such a rating can be used
to communicate with others. Other ways of rating fatigue -- color-coding, for example -- may be developed. Regardless of the
system used, ways of rating or ranking fatigue all carry potentially diminished accuracy due to the tendency for fatigue to
worsen if the disease progresses.
People close to those with MS can become very sensitive to the signs of fatigue.
There is good reason for this. The benefits of controlling fatigue are many. Not only does monitored and minimized fatigue
make the person with MS more like himself or herself for more of the time, but it also reduces the experience of many of the
chronic symptoms of MS, symptoms that are unpleasant for the person with MS and his or her family alike.
Not even the most sensitive and supportive family are as effective as awareness
and discipline in the person with MS. To do as much as one likes, to be as rested as possible, one must become an expert in
one's own disease. This involves taking care to avoid known fatiguing experiences, watching out for the warning signs of fatigue,
planning the day or week to provide for needed rest, keeping one's commitments to a level that avoids the buildup of fatigue,
and leaving a buffer to allow for recuperation if fatigue goes beyond expected levels. All these things, and more depending
on the form taken by one's own MS, can be monitored and controlled to a variable degree.
Fatigue is a central factor in MS and its control can have a profound modulating
influence on the experience of the disease.
Much is still unknown about fatigue. The experience of many people with MS and
some studies have given support to the idea that the avoidance of fatigue can influence the progression of MS or reduce exacerbations.
This, however, is still speculative. What is known is that fatigue is more than just an unpleasant part of this disease. When
the person with MS gets to the point of fatigue, all other symptoms of the disease are redoubled. For this reason and many
others, it is well worth any effort to reduce and control fatigue.
J.Lamar Freed, Psy.D. is a psychologist in private practice with offices in the
Philadelphia, PA area. He has been diagnosed with MS since 1993.
