By J. Lamar Freed, Psy.D.
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 which are often 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. The experience of fatigue may be felt as a 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 ability on one day differ dramatically from ones ability on another.
Attempts to uniformly classify types of MS fatigue have not been developed by researchers. Nevertheless, 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 an 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, influencing many aspects of ones abilities and one's subjective experience.
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 and mental 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 and perminantly, losses that temporarily occur within a single day or week 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 days 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, ones thinking can be completely unchanged or, alternately, a disturbance of ones thinking can be the only symptom experienced. Ones experience of fatigue depends on many variables: the location of lesions, the number of lesions, the degree of effort exerted by ones normal tasks, ones original intellectual capacity, the degree of physical exertion and resulting fatigue that accompany ones 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 the 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 ones 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 ones 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 good news is that if it is caused by fatigue, it can be cured by rest.
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 constantly 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 ones 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 ones 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 ones 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 ones social calendar, are 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 that includes rest, than those who were initially more sedate. Speculatively, a long history of undiagnosed MS may have already influenced individuals to be more sedentary by the time symptoms have worsened enough to get a diagnosis.
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), ones 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. It may be your spouse who sends you in from the garden, after noticing an increased tremor or wobble.
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.
Nevertheless, in most cases, not even the most sensitive and supportive family is as effective as the practiced, aware and disciplined person with MS. To do as much as one likes, to be as rested as possible, one must become an expert in ones 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 ones 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 ones own MS, can be monitored and controlled.
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 fatigu