Coping with Fatigue in MS Takes Understanding and Planning
Doctor explores physical causes of fatigue
Alexander Burnfield, M.B., M.R.C. Psych.
Editor's Note: The following article was adapted from a speech by Dr. Alexander Burnfield to members of Action for Research into Multiple Sclerosis (ARMS), a British organization dedicated to raising money for research and sponsoring telephone counseling services to its members. Dr. Burnfield is a psychiatrist who has M.S.
What Do We Mean by Fatigue in Multiple Sclerosis?
Fatigue is a sensation that is both universal to all and very specific to people who have multiple sclerosis. The fatigue that all people experience is due to tiredness and weakness affecting muscles after exercises or exertion. In multiple sclerosis, that fatigue that many people have is rather different since the nervous system as well as the muscles are involved.
The cause of MS fatigue is not fully understood. What may happen is that great difficulty is experienced in the transmission of nerve impulses along demyelinated nerves. The strength of the impulses is much reduced, resulting in feelings of weakness and tiredness. Sensory nerves as well as motor nerves are involved in this kind of fatigue.
Fatigue of motor nerves can cause weakness, a tired heavy feeling of muscles, incoordination and shakiness. Fatigue of sensory nerves, which help us to see, to hear, to taste, to smell and enable us to distinguish how objects feel, can cause problems in one or more of these senses. When we are fatigued, we don't just experience a heaviness, but we may also have blurred vision, numbness, or other difficulties in the sensory system.
Fatigue in multiple sclerosis may be brought on by exertion, but it can also occur for other reasons. It has been discovered that fatigue can be caused by eating a heavy meal, by smoking and by hot temperatures; for example, having a hot bath. This last experience is so universal that a "hot bath test" has been developed for MS. I expect that this is your experience too, because it has been well documented by research into MS and fatigue. The results can be experienced as heaviness or impaired vision after exercise.
I remember when I first developed MS, I had pain in my left eye with a strange feeling in the corner of my vision, I kept looking up but there was nothing there. A few weeks later I was playing tennis, and I suddenly felt very tired, after quite a short game. I noticed that my vision was considerably impaired. All I could see was my opponent's legs, then suddenly a tennis ball hit me on the head, and I hadn't a clue where it had come from! That was my introduction to "scotoma", a blind spot in the vision. It had been brought on by exercises and hot weather.
Old symptoms may return if you are fatigued. If you have been exercising or having a hot bath, you may find that symptoms experienced during a previous relapse come back. Sometimes you may wonder whether you are having another attack. I once had a very late night and when I lay down to go to sleep, I had severe vertigo. I though, "Oh no, not another relapse!" It wasn't. I was just very tired, and it was the effect of fatigue. It soon cleared up.
MS fatigue seems to happen faster than ordinary fatigue. For instance, if I begin to dig the garden, I start off well but about three or four minutes later, I feel very tired indeed. I used to wonder what the devil was going on, and my wife thought that I was trying to get out of the work! (That is a problem I will deal with later - the problems that fatigue causes psychologically and in relationships.)
If I hadn't had MS, I should have been able to dig in the garden for about an hour before fatigue was experienced. Recovery from MS fatigue also takes much longer than from ordinary fatigue. When I have had a hot bath or too much exercise, I have to lie down for a least half an hour before I recover.
Some people find their speech become worse after exertion or being overheated, or fatigue may cause tingling in the hands and feet, like pins and needles. It varies very much from individuals to individual, so one person with MS may have much less fatigue after exertion or hot baths than another.
What Causes Fatigue in MS?
Signs and symptoms are exaggerated after exertion or overheating or infection. "Signs" can be detected by the neurologist when he or she examines you (reflexes that are exaggerated or inverted, weakness, poor coordination). The "symptoms" you yourself feel - heaviness in a limb; blurring of vision. There may be no corresponding signs that the neurologist can find. I began to lose faith in neurologists to some extent because they often told me there was nothing wrong with me, and that my symptoms would completely disappear. I was assured several times that my vision was normal, but I knew subjectively that it wasn't. I was also assured that the tingling sensation would disappear from my hand, which it hasn't completely.
A lot of demyelination takes place in our brains and spinal cord when we have MS without necessarily producing any symptoms or signs. There can be myelin damage that, for the moment, is not causing either symptoms or signs that a neurologist can detect.
What happens after exertion or after a hot bath? The person experiences more of the neurological damage caused by the disease: he feels more tired; his vision appears worse to him; he has pins and needles; he feels almost flu-like, with a horrible feeling of fatigue. This illustrates why the hot bath test is useful in testing for multiple sclerosis. If you feel there is something wrong with you, but don't show any neurological signs on examination, you might be given the hot bath test. If signs show up after the bath, the neurologist could then say, "yes, there are signs of MS. There is neurological damage".
In some people the signs and symptoms of multiple sclerosis remain silent their entire lives. A Swiss pathologist (someone who studies damaged tissues) discovered that, out of a series of people who had MS identified by post mortem examination, about one in five had not been diagnosed clinically. No one, including the people themselves, knew they had MS. If their conditions were illustrated by a triangle, you would just see a large silent area. Perhaps when they were fatigued or ill, some slight symptoms may have been present, but possibly as a sign ever showed up. Some of them may have been diagnosed as having a condition other than MS.
To summarize, when we become fatigued, we have a shift downwards. We become more aware of the symptoms, and the signs of the disease become more obvious to an observer.
Problems Caused by Fatigue in MS
Unfortunately, having fatigue can cause a lot of problems - physical psychological, family and social. Physical problems are perhaps the most obvious at first. For instance, you can't do the same job, if you are manual laborer, without getting very tired and exhausted. Fatigue may cause problems in other parts of your life as well. It may be more difficult to look after children who are young and active; it may be impossible for your sex life to continue in the same way as before.
Psychological problems can develop if an early diagnosis is not obtained. People wonder what these strange feelings are that they have when they are tired. They wonder why the symptoms occur, why the doctor says there is nothing wrong with them, and why, after they have been to see the doctor several times, he or she seems to suggest that they are neurotic! It can happen that people who have MS are labeled as having psychiatric problems in the early stages. In some cases, MS may not progress beyond the feeling of tiredness of blurred vision and may therefore, never be diagnosed.
Even after MS is diagnosed, it is difficult for doctors (general practitioners especially, who may only see two or three people with MS in their practices) to understand the objective side of MS, the symptoms that we have. Neurologists see more people with MS, but they don't see them regularly, and they don't get to know them as people. Therefore, for different reasons neurologists my fail to pick up what is fatigue and what is a reaction to having a chronic disease like MS - a feeling of depression or anxiety.
People with MS are often depressed and worried about what is happening. this is a natural reaction. Unfortunately, the symptoms of anxiety and depression are similar symptoms to those of fatigue. You experience heaviness, a lack of energy, a feeling of tiredness. Who is to say what is depression and anxiety and what is MS? It is extremely difficult to tell as I myself found out when I experienced heaviness, a lack of energy, a feeling of tiredness. Who is to say what is depression and anxiety and what is MS? It is extremely difficult to tell as I myself found out when I experienced all these things at once. The result is that, as you become more depressed, the more you wonder what is gong on. Until you have sorted it out with help and understanding -- by talking it over with someone else who has MS, perhaps - you have to deal with a lot of anxiety. I think one of the values of self-help groups is to enable people with MS to share their experiences. After talking to others, they often feel relieved and know that their feelings are normal. They are not the psychiatric causes the feared themselves to be!
I mentioned that problems can occur in relationships because of fatigue. In my case, Penny (my wife) complained I was trying to get out of doing the gardening. I had fatigue which I couldn't understand or accept, so I would persist in trying to garden, but then find out that I just had to sit or lie down for a while. When we talked to other people with MS, we discovered that what was happening was normal. Now we make allowances. She does the practical, manual things about the house, and I do paperwork and things which don't require so much physical effort. We have adjusted, I have changed my role, and she has changed her role. I think it is very important that the role changes be tackled head on, and that people be encouraged to change roles realistically. This requires understanding by all members of the family, not just the person who has MS.
Role changes also apply to sexual activity. If the more sexually assertive partner develops MS, it may be necessary for the other person to become more active. Otherwise, their enjoyment of sexual relations may be impaired and may completely stop. It may even cause marriage breakdown if they misunderstand each other. The partner without MS might think the other one isn't interested anymore. A lot of problems relating to the sexual side of life occur in healthy people, so it is not surprising that people who have MS experience them as well. I am only dealing with fatigue now, but, of course, other sexual adjustments may have to be made as well. (For more information, please see the booklet Sexuality and Multiple Sclerosis, available from the Multiple Sclerosis Society of Canada.)
What Can be Done to Help?
In relieving the effects of fatigue, I think it is most important to understand, to realize that fatigue does occur, and that it is an integral part of having MS. It is important not only for us to understand it, but also for our relatives and our employers to understand and help us make adjustments in our lifestyle. It is important to express our feelings and our worries, and to talk with other people with MS who have experienced fatigue so we can work out how it affects us. I think it is also important that those in the health care professions such as nurses, doctors, physiotherapists and occupational therapists understand fatigue. They must understand that MS can cause fatigue which can show up to varying degrees in different people. Therefore, education for health care professionals must continue.
I think it is absolutely essential that we keep physically fit. We can't do much about our nerves, except avoid hot baths. I suppose, but we can keep fit within the scope of our physical abilities. We don't usually expect to do athletic - running, for instance, but we can get exercise in other ways. Exercise must not be overdone, but it must be sufficient to keep you fit. Each person should arrange a balanced program that fits his or her likes - swimming, yoga, calisthenics, whatever. I have found the best routine for me is to exercise fairly strenuously twice a day and follow the sessions with a short rest.
Other points to follow: Give up smoking. Lose weight if you are overweight. Follow a sensible diet. If you follow the recommendations of Canada's Food Guide, you will be getting a balanced diet. For more information, ask your doctor or have him or her refer you to a dietitian.)
You must plan your work. Outline your social occasions and your late nights so they don't all come in a row. Unfortunately, it doesn't always work out very well in practice, and I sometimes find I am going out every night of the week. I realize I am in danger of causing a relapse, but sometimes it is very difficult to plan ahead. But we do need willpower, and we must be able to say "No". Moderation must be the word so that we don't overdo, and yet don't opt nothing and underdo.
There are some specific activities, as well, that we can do to deal with fatigue. Physiotherapy can help people regain the use of muscles after a relapse. Coordination exercises are also important. Yoga can be helpful, as well. Yoga is a form of physiotherapy. It is also a form of forming a discipline. One of the main principles of yoga is that you never do anything beyond your capability. It is completely non-competitive. You go to your own limit and no more and therefore, it is ideally just for people who have MS. To quote a woman who had been involved with yoga for sometime:
"I know, of course, that yoga will not restore nerves and muscles which have been irreparably damaged by MS, but it is certainly helping me to maintain a better standard of general health than previously, and the breathing exercises and relaxation have resulted in a calmer state of mind and a happier outlook. Yoga has given me a new interest in life, and also introduced me to a new circle of faces and kind friendly people."
That is it exactly. Yoga doesn't do anything to nerves which have been damaged, but it is one way of keeping fit, and by joining a group, you make sure you receive regular exercise.
Yoga combined with a rest/exercise program of a more traditional sort could be a good way of planning one's life. It is in my day. I don't pretend to be a paragon of virtue, but every morning I spend about four minutes doing press-ups and yoga, and I do another four minutes in the evening. That is only eight minutes a day, but I do it every day and if you add it up over a month, it is quite a lot of exercise. The important thing is not the length of time, but the regularity.
An additional benefit of regular exercise, some people report, is the reduction of muscle spasms. Spasms occur when a muscle goes into a strong contraction and doesn't relax. It can be quite painful. In some people they occur when they are fatigued, so by following a regular regime of exercise and rest, they are able to avoid this particular complication. Specific medications can also help prevent muscle spasms.
Summary
In conclusion, Fatigue is very much a symptom of multiple sclerosis but one that can be managed if it is understood. Fatigue may be experienced as overwhelming tiredness (lassitude) or as sensory difficulties - blurred vision, slurred speech, pins and needles, numbness. Fatigue may be brought on by exertion, heat infection or overeating. When fatigue is experienced, the signs and symptoms of MS become more pronounced. Unless fatigue is recognized and understood, people who have MS may be thought to have psychological problems by their families, friends and employers. Talking with others who have MS is a good way to understand the problems fatigue can cause and to learn methods of overcoming them. A regular exercise program is helpful in becoming and staying fit. Moderation is the key to leading a full and happy life, but occasionally, extremes give spice.
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.

