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by Alexander Burnfield, MB BS FRCPsych DPM The Family Consultancy, Andover, UK
What do we mean by fatigue in multiple sclerosis? Why is it different?
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 exercise or exertion. In multiple sclerosis, the 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" was developed for 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 came from! That was my introduction to "scotoma", a blind spot in the vision. It had been revealed by exercise 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 thought, "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 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 a hot bath or too much exercise, I have to lie down for at least a half an hour before I recover. Some people find their speech becomes 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 individual to individual, so one person with MS may have much less fatigue after exertion or hot baths than another.
What causes fatigue in MS?
The drawing of the two triangles illustrates how signs and symptoms are exaggerated after exertion or overheating or infection. Triangle A represents the "before" and Triangle B represents the "after". The tip of Triangle A represents the "signs" that can be detected by the neurologist when he or she examines you (reflexes that are exaggerated or inverted, weakness, poor coordination).
The middle section represents the "symptoms" you yourself feel - heaviness in a limb; blurring of vision; tingling in fingers. There may be no corresponding signs that the neurologist can find. I began to lose faith in neurologists 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 also knew subjectively that it wasn't. I was also assured that the tingling sensation would disappear from my hand, which it hasn't completely.
At the bottom of the triangle is a large section labeled "silent area". This represents the damage the nerve insulating area, the myelin. A lot of demyelination takes place in our brains and spinal cord when we have MS without necessarily producing any symptoms or signs. So the silent area represents myelin damage, that for the moment, is not causing either symptoms or signs that neurologists can detect.
Triangle B illustrates what happened after exertion or a hot bath. The person experiences more of the neurological damage caused by the disease: they feel more tired; their vision appears worse to them; they have pins and needles; they feel almost flu-like, with a horrible feeling of fatigue. Therefore the symptom area of Triangle B is accordingly much greater.
As you can see, the silent area is still there, but is smaller than before. The person is experiencing the damage that exists in the silent area, but which does not ordinarily show up. Indeed, in some people the signs and symptoms of multiple sclerosis remain silent their entire lives. A Swiss pathologist (someone who studies damaged tissue) discovered that, out of a series of people who had MS identified by a 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 no signs 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 downward in the triangle. 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
In a Canadian survey of people with MS, 40% cited fatigue as their most distressing symptom. 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 a manual labourer, 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 quite 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 or 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 subjective side of MS, the symptoms that we have. Neurologists see more people with MS, but they don't usually get to know them so well as people. Therefore, for different reasons neurologists may also fail to pick up what is fatigue and what is a reaction to having a chronic illness 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 all these things at once. The result is that, as you become more depressed, the more you wonder what is going 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 cases they 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 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 the 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 are tackled head on, and that people are 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.
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, 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 athletics - 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 suits 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 in Canada's Food Guide, you will be eating a well balanced diet. For more information, ask your doctor or have him or her refer you to a dietitian. You can also refer to Healthy Eating: A guide for persons with multiple sclerosis by Erla Wankling and Doreen Thomson, available through the Multiple Sclerosis Society of Canada.)
You must plan your work routine, 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 you don't overdo, and you don't opt out and underdo.
Many people find that they are most affected in the late afternoon when the body temperature is at the highest point of its cycle, and when exhaustion is natural towards the end of the day. I find that my mind and body work best in the mornings and so I try to do jobs which need concentration and effort. I can sometimes take a rest in the late afternoon, and then after a cool shower I am ready to make the best of the evening. You may find that this pattern helps you too, but it is worth experimenting to find out the daily routine that suits you best as an individual.
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 training, 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 your own limit and no more, and therefore, it is ideally tailored for people who have MS. To quote a woman who has 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 cycle 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 could 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 prevent muscle spasms.
According to information in Therapeutic Claims in MS. (3rd Edition, 1993), several small studies have indicated that the anti-viral drug amantadine (Symmetrel) may relieve the sense of overwhelming fatigue common in many, but not all, people with MS. It is a relatively safe drug used in the treatment of Parkinson's disease, and produces few side effects in doses of 100 mg twice daily. People interested in this medication should consult their own physicians.
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, over eating. When fatigue is experienced, the signs and symptoms of MS become more pronounced. Unless fatigue is recognized and understood, people with 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.
