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by: J. Lamar Freed,
Psy.D. Every introductory article on Multiple Sclerosis (MS) that I've read mentions that many people with MS get fatigue. Health care professionals are usually informed about this effect of the disease as well. Yet despite this recognition I do not believe fatigue has been taken as seriously nor viewed as profoundly as what the experience of people with MS merits. Fatigue is a symptom of MS. But is so much more than that. Fatigue underlies and influences a great many of the other symptoms experienced by people with MS. The essential mechanism of MS is that the Brain's Myelin covered nerve cells that communicate the commands and information from one part of the Brain to another or to other parts of the body are impeded or blocked by the destruction of the Myelin sheath which surrounds and insulates the cells. These communication cells serve as the superhighway that makes these messages travel quickly and easily. This means that for the information to travel properly when the Myelin has been destroyed or damaged it must bully through on less efficient channels, or go around on other channels that may not be ideally constructed for the task. It's 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 can be profoundly disrupted. Like with drives that last too long, fatigue is one of the results. Fatigue is experienced both physically and mentally. It is sometimes easily evident because of a feeling of general tiredness and it can also be overlooked. It can show itself immediately and it can be delayed, at times for days. Its primary treatment is rest. And like everything else about MS, it is highly variable from one person to the next. Physical fatigue is often experienced as a bone numbing tiredness. It is a tiredness that belays description. It can make movement seem impossible and the requirement for movement overwhelming. It is fatigue that is to blame when someone with MS can walk without visible difficulty in the morning and by evening need to have a wheel chair 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. There have been attempts to classify types of MS fatigue without a developed consensus among researchers. Some attempts can be seen in other files in the Multiple Sclerosis Forum Library. As can be seen in these articles, there is good 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 simply an exaggeration of normal fatigue, MS fatigue is qualitatively different. One cannot simply say that for someone with MS a shopping trip is like running a marathon or that a day at the beach like climbing Mt. Everest. The experience of neurological fatigue is unique. Yet 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, meaning that it cannot respond to the Brain's commands. Yet the rest of the Nervous System may have little or no damage and require no more energy than usual. For most people with MS, however, 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 Cord. It is this accumulation of lesions, the multiple potholes and cracks in the superhighway system, that lead to the physical fatigue experienced by so many with MS. Mental fatigue is less well understood. There have been studies of the Cognitive and Memory difficulties of those with advanced MS. These studies have demonstrated that thinking can be disturbed and that fatigue does have a disruptive effect. Yet what is known experimentally has only confirmed what people with MS have known for a long time: lesions in the communication pathways interfere with thinking as well as movement. The quality and speed of thinking for someone with MS can be as variable as his or her walking. Someone who can do complicated mathematical permutations on Monday morning may be unable to calculate his milage by Friday afternoon. Following directions with multiple steps and decision points can seem simple when rested, while it can be an impossible task, requiring many repetitions or copious note taking during a period of fatigue. Simple facts and figures may be effortlessly retrieved after a period of rest, but seem impossibly remote later after activity. While MS can disturb memory or thinking directly, these changes within ones' day or week are the result of fatigue. |
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Mental exertion for someone with MS can appear to 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. However, 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. Like 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. Ones 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 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 nights rest. In my personal experience I've found that when I've reached states of deep fatigue it is after the 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, one must also realize that the recovery time after over-fatiguing oneself can last longer than the rest of one day or the next. A period of days may sometimes 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 that supports this as possible, though it is not conclusive. What is conclusive is that one's 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, they may worsen with fatigue. But 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 don't do many things as well. 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, distractable, 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 ago. 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, snappier, they may be more prone to tears or tirades, they are often more easily hurt and less hesitant to hurt others. When tired, people are less in control of both thoughts and emotions and when fatigue states become extreme moods can look labile or highly fluctuating and out of control. So not only are the body's and minds of people with MS more prone to fatigue, but that experience compounds itself to test normal human resiliency and make it less accessible, at times leaving the person with MS struggling to meet the challenges of the disease with lowered spirits and undermined resolve. Yet this experience is not depression and it is not anxiety. This 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. The treatment of fatigue has been attempted by physicians with medications. A variety of stimulants have been tested and demonstrated to improve the energy levels of some people suffering MS fatigue. These medications along with there effects are listed in other files in the Multiple Sclerosis Forum Library. But not everyone benefits from these medications and for some they provides only a partial improvement in one's level of energy or offers some unpleasant side effects. More effective is a treatment one does not need a physician to prescribe: rest. But 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, watching movies on days off; modulating one's social calendar. The environment can also be changed or modified slightly. Better seating at home or at work can be provided. Within a family, chores can be redivided 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. Tasks can be organized to leave those that are less demanding for the end of the day and week. |
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Many times such slight changes are effective at decreasing the severe fatigue suffered in MS. But more frequently more dramatic changes are needed. Fatigue may be reduced much more significantly if more aggressive changes are made. Taking a 2 hour lunch for example or taking a nap in the afternoon are examples. Parents raising 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 left and 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 still things that can be done 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 the level of fatigue. This is 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 'net, learning to speak another language, memorizing the birds of the Amazon - the list is endless. This is more difficult for some then for others. Those who most enjoy active invigorating physical recreation may have more difficulty adjusting to the regimen of rest required by this disease. Ironically, the tiredness to which people begin to adjust before getting a clear diagnosis often has pushed people with MS in this direction. The people that surround the person with MS can also be trained to serve as a buffer against the exhaustion. In addition to taking on the more physically demanding chores (or all of the chores, at times) one's loved ones can be taught to be 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 back to home and hearth.
Ways of communicating about fatigue may have to be developed within a family. Like for anxiety or pain, people can rate fatigue. 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 and use this rating to communicate with others. Other ways of rating fatigue can be used as well, for example, color coding fatigue states. Regardless of the coding system such ways of rating or ranking fatigue all suffer from 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 him or her self 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. Yet not even the most sensitive and supportive family can replace the awareness and discipline of the 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 many things, including being careful to avoid known fatiguing experiences, watching out for the warning signs of fatigue, planning the day or week to provide for a needed time out for rest, keeping one's personal and work commitments to a level that avoids the buildup of fatigue and leaves a buffer to allow for recuperation if fatigue does go 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. Yet 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 of the other symptoms of the disease are redoubled. For this reason, and many others, it is well worth any effort to reduce and control fatigue.
This article may be printed or posted without permission, but not without attribution. Written by J. Lamar Freed, Psy.D., March 16, 1996. Dr. Freed is a psychologist in private practice in the northern suburbs of Philadelphia, Pa. He has been diagnosed with MS since 1993. |
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