But You Look So Good

(Fatigue & MS)

Inside MS, Fall 1983

Fatigue is a symptom whose effect can be pernicious and deceiving. Because people with Multiple Sclerosis themselves are often unaware of the extensive role fatigue plays in MS, they become easy prey to phrases like, "It's psychological", "It's mental", and "You're just overreacting". "I get so tired of hearing people say I know you have MS but you look great", one person commented. "They just don't understand".

Dr. Floyd Davis, Director of the MS Center at Rush-Presbyterian-St. Luke's Medical Center in Chicago, says fatigue is a universal complaint and a special phenomenon in-patients with multiple sclerosis. You don't have to work up a sweat to be fatigued - sometimes after just a short period of walking or writing or reading a person has to stop functioning for a while" he says.

What makes fatigue so special in multiple sclerosis? Dr. Robert M. Herndon, Director of the Center for Brain Research at the University of Rochester, N.Y. and the MS Clinic there says there are four main sources of fatigue in people with MS.

Demyelinated nerve fibers appear to use much more energy conducting nerve impulses than normal fibers and as a result they fatigue with use, causing increased weakness and poor coordination.

Weakened muscles put an extra workload on stronger muscles, causing them to fatigue more rapidly.

Depression and frustration at having a chronic disease such as MS can result in fatigue.

People with MS also experience normal muscle fatigue like anyone else but because of all of the energy sapped by their disease this normal fatigue is more common and occurs more quickly.

Dr. Davis clarifies fatigue in people with MS even further by maintaining that fatigue "can either be based in the muscles or the central nervous system and it doesn't take much to fatigue the central nervous system."

"Not only do people with MS look well, they feel well until they begin a certain activity. They function beautifully for a while and then all at once they have to stop because the nerve impulses just aren't getting through. "It's like a motor - it can be a very powerful motor but if you can't get the electricity to the spark plugs, the machine won't run."

Dr. Davis says some of his own MS patients have described their nerve fiber fatigue as similar to dreams in which the dreamer is being chased but somehow can't make his legs move. Sometimes this fatigue is brought on by a rise in body temperature.

"It involves large numbers of nerve fibers in a state of borderline function", Dr. Davis explains, "which suddenly turn off when the body temperature is elevated only one or two degrees. Thus in a sense many patients with MS appear like the tip of an iceberg: What is seen on simple inspection represents only a small part of the overall difficulty the individual may experience under usual working conditions or even routine daily activities"

This sensitivity to temperatures also can reflect the body's normal daily temperature cycle, which varies about one degree F. It is lowest about 2 - 3 am and highest in the afternoon. This fatigue combined with that from physical exertion and daily activities can result in a person's feeling especially weak and fatigued between 3 and 6 pm.

The importance of the recognition of fatigue as a special symptom of MS extends far beyond that of family and friends' understanding. It is also the center of a controversy over the definition of MS for the purposes of Social Security disability coverage.

The National Multiple Sclerosis Society through its Medical Advisory Board, has been working with the Social Security Administration for some three years, in an effort to establish medical criteria that reflect current knowledge of the disease for those persons who have MS.

The Society presented its recommendations for incorporating the fatigue factor into the Social Security disability regulations, but no action has yet been taken. In a continuing effort to bring about the necessary changes, NMSS Board members and chapter leaders have contacted members of the House Subcommittee on Social Security and other congressional committees relating the matter.

Dr. Davis, in testifying before the House Subcommittee on Social Security this summer, declared that "it is the view of those of us specializing in neurology and multiple sclerosis that the disability criteria used by the Social Security Administration are too narrow, and do not reflect medical judgment on the disabling nature of MS accompanied by motor and sensory fatigue.

The current definition of MS that frequently results in disability coverage being denied limits symptoms to (1) significant and persistent disorganization of motor function (e.g. paralysis, tremor) and (2) visual or mental impairments (chronic brain syndrome).

Dr. Davis countered in his testimony that many people with disabling MS are not paralyzed nor are they visually or mentally impaired. However, he said, "they are disabled from the physical phenomenon I have referred to as motor and sensory fatigue. It is related directly to the disease which often renders them as unable to work as if they were paralyzed or had the other facets of MS recognized in the medical listings."

In the meantime, people with MS need help in dealing with their chronic fatigue. Dr. Herndon says that as a general rule, fatigue for an MS person is not harmful as long as it is not prolonged. It may even help improve endurance. But chronic over tiring not getting enough rest and sleep can be harmful.

"For muscle-related fatigue" Dr. Herndon says, "you can exercise and strengthen muscles that are not affected by MS and in a few months you should not be getting as tired. There are also drugs to help relieve depression."

Part of the emotionally related fatigue may result from struggling to function when you can't, Dr. Davis says. He and Dr. Herndon both recommend pacing your daily activities and planning ahead by scheduling rest periods throughout the day, especially before and after strenuous activities.

Arrange your day to conserve energy by combining shopping trips, minimizing stair climbing and sharing family chores. Consult therapists, other experts and literature on adapting your home to your disability and simplifying your lifestyle.

Be patient with friends and relatives who don't understand the symptom as it relates to you. Take the time to explain it to them. Give them literature on the subject. Once they understand, you will have an important new ally in you fight against fatigue, you may never again have to hear the words, "But you look so good!"

This is a reprint of an article from Inside MS, fall 1983

Was this information helpful? Then please consider making a donation. We are a small, independent nonprofit agency and are dependent on donations from our supporters. Thank you from all the staff at the MSA.




	But You Look So Good (Fatigue & MS) Inside MS, Fall 1983 Fatigue is a symptom whose effect can be pernicious and deceiving. Because people with Multiple Sclerosis themselves are often unaware of the extensive role fatigue plays in MS, they become easy prey to phrases like, "It's psychological", "It's mental", and "You're just overreacting". "I get so tired of hearing people say I know you have MS but you look great", one person commented. "They just don't understand". Dr. Floyd Davis, Director of the MS Center at Rush-Presbyterian-St. Luke's Medical Center in Chicago, says fatigue is a universal complaint and a special phenomenon in-patients with multiple sclerosis. You don't have to work up a sweat to be fatigued - sometimes after just a short period of walking or writing or reading a person has to stop functioning for a while" he says. What makes fatigue so special in multiple sclerosis? Dr. Robert M. Herndon, Director of the Center for Brain Research at the University of Rochester, N.Y. and the MS Clinic there says there are four main sources of fatigue in people with MS. Demyelinated nerve fibers appear to use much more energy conducting nerve impulses than normal fibers and as a result they fatigue with use, causing increased weakness and poor coordination. Weakened muscles put an extra workload on stronger muscles, causing them to fatigue more rapidly. Depression and frustration at having a chronic disease such as MS can result in fatigue. People with MS also experience normal muscle fatigue like anyone else but because of all of the energy sapped by their disease this normal fatigue is more common and occurs more quickly. Dr. Davis clarifies fatigue in people with MS even further by maintaining that fatigue "can either be based in the muscles or the central nervous system and it doesn't take much to fatigue the central nervous system." "Not only do people with MS look well, they feel well until they begin a certain activity. They function beautifully for a while and then all at once they have to stop because the nerve impulses just aren't getting through. "It's like a motor - it can be a very powerful motor but if you can't get the electricity to the spark plugs, the machine won't run." Dr. Davis says some of his own MS patients have described their nerve fiber fatigue as similar to dreams in which the dreamer is being chased but somehow can't make his legs move. Sometimes this fatigue is brought on by a rise in body temperature. "It involves large numbers of nerve fibers in a state of borderline function", Dr. Davis explains, "which suddenly turn off when the body temperature is elevated only one or two degrees. Thus in a sense many patients with MS appear like the tip of an iceberg: What is seen on simple inspection represents only a small part of the overall difficulty the individual may experience under usual working conditions or even routine daily activities" This sensitivity to temperatures also can reflect the body's normal daily temperature cycle, which varies about one degree F. It is lowest about 2 - 3 am and highest in the afternoon. This fatigue combined with that from physical exertion and daily activities can result in a person's feeling especially weak and fatigued between 3 and 6 pm. The importance of the recognition of fatigue as a special symptom of MS extends far beyond that of family and friends' understanding. It is also the center of a controversy over the definition of MS for the purposes of Social Security disability coverage. The National Multiple Sclerosis Society through its Medical Advisory Board, has been working with the Social Security Administration for some three years, in an effort to establish medical criteria that reflect current knowledge of the disease for those persons who have MS. The Society presented its recommendations for incorporating the fatigue factor into the Social Security disability regulations, but no action has yet been taken. In a continuing effort to bring about the necessary changes, NMSS Board members and chapter leaders have contacted members of the House Subcommittee on Social Security and other congressional committees relating the matter. Dr. Davis, in testifying before the House Subcommittee on Social Security this summer, declared that "it is the view of those of us specializing in neurology and multiple sclerosis that the disability criteria used by the Social Security Administration are too narrow, and do not reflect medical judgment on the disabling nature of MS accompanied by motor and sensory fatigue. The current definition of MS that frequently results in disability coverage being denied limits symptoms to (1) significant and persistent disorganization of motor function (e.g. paralysis, tremor) and (2) visual or mental impairments (chronic brain syndrome). Dr. Davis countered in his testimony that many people with disabling MS are not paralyzed nor are they visually or mentally impaired. However, he said, "they are disabled from the physical phenomenon I have referred to as motor and sensory fatigue. It is related directly to the disease which often renders them as unable to work as if they were paralyzed or had the other facets of MS recognized in the medical listings." In the meantime, people with MS need help in dealing with their chronic fatigue. Dr. Herndon says that as a general rule, fatigue for an MS person is not harmful as long as it is not prolonged. It may even help improve endurance. But chronic over tiring not getting enough rest and sleep can be harmful. "For muscle-related fatigue" Dr. Herndon says, "you can exercise and strengthen muscles that are not affected by MS and in a few months you should not be getting as tired. There are also drugs to help relieve depression." Part of the emotionally related fatigue may result from struggling to function when you can't, Dr. Davis says. He and Dr. Herndon both recommend pacing your daily activities and planning ahead by scheduling rest periods throughout the day, especially before and after strenuous activities. Arrange your day to conserve energy by combining shopping trips, minimizing stair climbing and sharing family chores. Consult therapists, other experts and literature on adapting your home to your disability and simplifying your lifestyle. Be patient with friends and relatives who don't understand the symptom as it relates to you. Take the time to explain it to them. Give them literature on the subject. Once they understand, you will have an important new ally in you fight against fatigue, you may never again have to hear the words, "But you look so good!" This is a reprint of an article from Inside MS, fall 1983 Was this information helpful? Then please consider making a donation. We are a small, independent nonprofit agency and are dependent on donations from our supporters. Thank you from all the staff at the MSA.
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