by J. Lamar Freed, Psy.D.
The experience of Multiple Sclerosis (MS) is marked by fatigue more than any other symptom. Health care professionals usually are informed about this effect of the disease and, of course, those of us with the disease are all to well acquainted with it’s effects. Yet despite this recognition, fatigue has not been taken as seriously nor viewed as profoundly as it 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 and profoundly influences our quality of life.
In the last 20 years the reason for why people with MS (PWMS) become fatigued has been blamed on demyelination, the same reason for why limbs might be paralyzed or why we get the funny sensations or neuralgias in places anywhere in our body. This explanation says that the brain’s myelin-covered nerve cells are impeded or blocked when the myelin sheath is destroyed. The brain’s information superhighway turns into a quagmire of back roads and detours. Using them is exhausting. More recent research has brought this explanation into question, suggesting that fatigue may be a symptom of MS that comes from the same underlying source that causes the immune system to attack myelin. Fatigue may be only partially related to the level of demylenation. Regardless, fatigue is still the most frequent reason for MS disability and something that most PWMS experience in a variety of ways.
Fatigue is a complicated experience. It can be mental as well as physical, producing difficulty in efficiently using our brains: managing information; retrieving information; concentrating or more selective difficulties.
Examples range far. PWMS may have difficulty following directions or might have trouble multitasking at the end of a long day or long week. We can have trouble with emotional regulation at times as well, laughing out of proportion to a joke or alternately unable to pull themselves together after a nasty jolt. We can become snappy, or irritable or grouchy at sometimes unpredictable times. But often it is predictable. We have dipped too deeply into the well of our limited energy.
Fatigue can also be experienced as lassitude, which is a sense of disengagement from the world. This might look like a loss of a sense of time, a loss of appropriate urgency about tasks, or difficulty holding multiple pieces of information in the brain at once and many other things.
Fatigue can be experienced physically, with reduced strength in our limbs, reduced speed in our reaction time, or increased neuralgias, the numbness, pain, and other discomforts that come from malfunctioning neurological systems. It can show itself immediately or, at times, it can be delayed for days. It is highly variable from one person to the next. And while there are many options to help with fatigue, 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. But it is also responsible for the times when picking up a child is easy in the morning, but a huge task by afternoon.
Attempts to uniformly classify types of MS fatigue have been developed by researchers, but there is no single method that has been used by all. The popular spoons article (search “Spoons and MS) appears to have summed up our experience in ways that resonates with many of us, though it is not a classification system, but rather a highly effective analogy.
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 our abilities and our experience.
Fatigue is also variable, reflecting the experience of the different people who get this disease. 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. Nevertheless, these folks do experience the objective consequences of fatigue. As the day goes on, their gait is likely to worsen. Mentally, they may become less focused and fuzzier as they press themselves to their tasks. Yet they don’t experience the subjective sense of exhaustion that many of the rest of us do.
How does this happen? In part it 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. The rest of the nervous system may have little or no damage and require no more energy than usual. For people who have this experience, the fatigue is focused only on the small area that is malfunctioning and they may not experience the overall sense of exhaustion that is more common.
For many other PWMS, 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 more general 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 the tip on Friday night date. Following directions with multiple steps and decision points can seem simple when a person is rested, but may be impossible, requiring many repetitions or copious notes, during a period of fatigue. While MS can disturb memory or thinking directly and permanently, losses that temporarily occur within a single day or week and that improve with rest are the result of fatigue. The experience of mental fatigue, like physical 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, thinking can be completely unchanged or, alternately, a disturbance of thinking can be the only symptom experienced. Our experience of fatigue depends on many variables: the location of lesions, the number of lesions, the degree of effort exerted by normal tasks, the original intellectual capacity, the degree of physical exertion and resulting fatigue that accompany 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. Early in my personal experience with MS I found that when I 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 we can press ourselves to a degree, the recovery time for extreme fatigue may be longer than just one night’s sleep. A period of days may be required to recover from a particularly fatiguing or demanding experience or series of experiences. Similarly, fatigue can be cumulative. While someone with MS may be able to handle a busy day without much difficulty at times, two or three busy days in a row can lead to very difficult fatigue.
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 and experience to support this, although it is not conclusive. What is conclusive is that chronic symptoms 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 often 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. This cannot be emphasized enough because it has an effect on all aspects of our quality and pace of life.
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.
Adults with MS do not carry their moods transparently, like children. But the underlying effect is very similar, even as it varies according to ones particular personality. When someone is operating while fatigued, even when that someone is an adult, his or her experience changes dramatically. Moods can be low. Demoralization can set in. Negative thoughts may seem more realistic. Requests from others might 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 themselves. People can be 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 is different from these emotional issues and is less likely to respond to treatments for psychological disorders.
Fatigue has been treated 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 side 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 may offer unpleasant side effects.
More effective is the treatment one can get without a doctor’s prescription: rest.
The need for rest and our ability to discipline ourselves 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 quiet lunch instead of running errands or exercising; reading or watching movies on days off; or moderating our social calendars, as 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. Fatigue can be disabling.
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), 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. Rate the worse experience of fatigue as a ten and the complete absence of fatigue as a zero, then compare your current fatigue state to other times. Use this to communicate with your family. Other ways of rating fatigue — color-coding, for example — may be developed.
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.
But 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 we like, to be as rested as possible, we must become expert in our 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 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. As a person with MS gets more fatigued, all other symptoms of the disease are made worse. For this reason and many others, it is well worth any effort to reduce and control fatigue.