Post-Polio Health (ISSN 1066-5331)
Vol. 6, No. 2, Spring 1990
Prescription for Fatigue
Jane Dummer, polio survivor, Baltimore, Maryland;
William Waring, MD, physician, University Hospital, Ann Arbor, Michigan;
Richard Owen, MD, polio survivor and physician, Sister Kenny Institute, Minneapolis, Minnesota;
Martin B. Wice, MD, physician, St. John's Mercy Medical Center, Saint Louis, Missouri
I am qualified to speak about fatigue because I fade right after lunch. When I agreed to speak, I realized very quickly I was going to discuss something which is global, yet something I really cannot define for you.
So what am I going to say? Fatigue is a normal part of living. Perhaps I can say something about what I have experienced that would help people who do not yet know they have polio-related fatigue to see how it may be different from the fatigue that anyone who is alive has.
I had polio many years ago and did fine with a brace and cane while pursuing normal activities for about 30 years. I knew my baseline. I have always been limited in what I could do, but within the parameters of my limitation, I was able to carry on a fairly normal existence. About ten years ago, I started to develop weakness and pain. Much of the weakness was in my better leg, which started giving way on occasion. I was very concerned.
But I was not aware that I had overall fatigue until the day I was coming back from a meeting in an enormous federal complex in Baltimore. About halfway back, my better leg started to shake. I stopped dead in my tracks. I had to sit down; I did not move. After I rested, I limped over to my desk. I sat in a state of "zombie-ism" for about two hours, thinking, "This is it! You know you have to go to meetings in other buildings. You need a wheelchair."
I bought a wheelchair that afternoon. (I did not buy the right kind, but that is another lecture!) The next day I rode over to the same place and back in my wheelchair, and I was absolutely amazed! I came back as rested as when I had left for the meeting. I was able to work for the rest of the afternoon. At that particular moment, I realized that over a period of three or four years, I had gradually been curtailing my activities to deal with chronic overall, unaccustomed fatigue (about which we hear so much), and I did not even know I was doing it!
I am a very pragmatic person. As a general rule I deal with things in a straightforward manner, but it really shocked me to think how much I had altered lifestyle and didn't even know it!
In the last couple of years, it has been obvious that fatigue is my main problem. I could not ignore it forever. It has had an impact on my job, on my social life. I had a nap before lunch today, and that is why I am here. I am good for six hours. I have an eight-hour-a-day job.
What helps me the most is rest. I asked if I could take a rest period on my lunch hour at work. I was nervous because I knew they were going to think I was not doing a competent job if I could not stay awake for eight hours. It was hard to go and ask, but I did it. They agreed.
About three weeks later my supervisor said, "Jane, I am just not sure this rest period is working out." I said, "What do you mean?" She said, "Before you started to take that nap you were so docile and quiet all afternoon, I didn't have to worry about supervising you. Now I do not what you are going to stir up!"
One of the biggest things about fatigue as a polio survivor is its assault on your self-esteem. You suddenly cannot do what you have always done. You may start an activity and cannot continue it. You may have to work part-time. You may have to forego the promotion because the job might be too taxing. If you let it, these circumstances hurt your self-esteem. I think the trick is to take as much control as you can. Make your own choices and be aware that you can change them! You have to alter your lifestyle and see what works for you. That is what I am doing. I am trying things, and if they do not work, I drop them and I try something else. I am going to look at part-time work, think about disability retirement, and look at getting some hobbies that are not so taxing. I am trying to focus on quality of life, retain my sense of humor, and learn. I am trying to listen to my body, not deny what is going on, and live within it. I came here to share with people like you, to learn from you, and hopefully to help you.
I'm very happy to be here because it's a chance for me to thank some of you for being my patients. You have taught me about my profession, and you are a pleasure to work with because you're so involved. You care about what's going on and want to learn more.
It is evident that from a medical and scientific standpoint, fatigue is confusing. From a clinical standpoint, the biggest challenge I face is to understand the symptom or complaint and to correlate that with what I understand in terms of the physiology.
One definition of the post-polio syndrome is based on five points.
The first point is a history of polio. The second is a period of recovery, which is followed by the third step - stability. The next step is the onset of problems, such as fatigue, weakness, shortness of breath and pain. The llast point is the exclusion of any other medical diagnosis to explain these symptoms.
One of the changes I've seen in the last few years is that there has been a change in the flexibility of thinking about these post-polio problems. We not only continue to study what might be a potential nerve problem, but we also now look at things that are obvious. There are symptoms that can be identified and symptoms that can be treated. That's our challenge as clinicians – find things we can treat.
From a physiological standpoint, fatigue is best studied and best understood at the muscle-nerve level where fatigue can be defined as the normal loss of maximal or sustained tension over time. In this context, all muscle will fatigue if it's asked to work hard enough. It is also true for a muscle that is already weak.
Scientists have developed a curve on a graph that compares strength and fatigue by the amount of work the muscle does. When muscles are asked to do very little work, they don't get fatigued, or it takes a very long time for that to happen. As we approach the maximal strength of the muscle, it fatigues very quickly. In fact, it can fatigue at maximal strength in seconds.
Now, with a weakened muscle, whatever the cause, the curve has the same shape, but it's in a slightly different location on the graph. The muscle fatigues earlier at lower loads and its maximal point is also less. So a muscle that's weakened from polio might do pretty well and not fatigue, as long as it's not at the maximal end of its function. If you ask the muscle to work harder, it fatigues very quickly. If there's an absolute loss of strength, the curve will move down.
Fatigue as a symptom is not as well studied or understood, because we could look at it as a perception of how you feel. It tends to be more clinical than basic science, and we have a number of conditions that have fatigue as a symptom – multiple sclerosis, strokes, pain disorders, anxiety, stress, sleep disorders and chronic pain.
In our clinic at the University of Michigan, we have a number of patients who do not have any evidence of polio. This is determined by clinical examination, electromyography and by screening with single-fiber electromyography. When we compare the symptoms these individuals report to those of the survivors who have obvious weakness from polio, we find that their complaints about fatigue are about the same. I think this points out that fatigue can be a sign of a disease but is not a specific sign of anything. Because of that, we need to have an open mind and work on developing a list of possible causes.
I approach this problem in terms of what could be causing this person's fatigue. I start with a clear history. Some survivors will talk about fatigue in a very specific manner ("If I walk a lot, my foot drags") while others speak more of a perception ("I just feel wiped out"). Fatigue changes from individual to individual.
Some possible causes of fatigue include deconditioning of muscle, severe sleep disorders and pain. Pain, the major complaint of survivors who see us, can cause fatigue because one reaction to pain is inactivity. Severe pain can also affect your sense of how you feel.
Fatigue results when muscles work harder as a result of weight gain. Fatigue can also be the presenting symptom of depression. As a whole, the post-polio population is probably less depressed than the normal population. Anxiety and stress can cause fatigue, and these two factors are very common in the post-polio population.
A cause of fatigue is the development of any progressive deformity. For those of you who have knees that are becoming unstable or giving out, the leg in effect is made shorter. It's like stepping in a hole and you use extra energy picking that leg up to walk. Any pain that might cause a limp will tend to be translated into more energy cost. (Remember the curve. If you're on the end of the curve, a little change might make a big difference, and the muscle is now fatiguing.)
I want to discuss walking and relate some of the results of a study done last summer with polio survivors and non-disabled people who were in the same age group. The people wore a pedometer, which measures how many steps you take, and if you know your stride length, you can figure distances walked.
What we found, not surprisingly, is that polio survivors walked about an average of kilometers a day, while the controls milked about four kilometers a day or almost twice as far.
The polio survivors walked fewer steps but proportionately more in terms of distance. People with polio tend to walk slower - the average speed for polio survivors was 50 meters per minute compared to 75 meters per minute. Their stride length was also shorter – 56 centimeters versus 70 centimeters. These changes in terms of walking slower with shorter strides can be very useful in terms of pain management and safety, but the price is paid with more work for the distance. Many survivors have experienced a major decrease in walking ability.
We recently had a paper published in the Archives of Physical Medicine concerning gait management with polio. The survivors who got an appropriate brace for their legs and used it daily (which was about 60%) reported not only increased walking distances, less pain, increased safety, but also less fatigue.
Another potential cause for fatigue is in terms of deconditioning of heart and lungs. The polio population shares with the normal population the fact that most of you do walk; over 90% of you learned to walk after polio. I think 90% of you are still ambulating, and that accounts for the majority of the energy you expend daily. It also is the main way people can stress their heart and lungs to get the beneficial effects of exercise. As there is a major drop in the ability to walk distances, there is a gradual loss of heart and lung conditioning.
I can't tell clinically by looking at you whether your fatigue is from heart and lung deconditioning. But certainly by taking a good history. I can get an idea whether I think you are at risk for this problem. I think that we're beginning to believe (and to practice) that we need to treat each of you separately and develop your own individualized program recommendations. It's not a case now of "use it or lose it" or "preserve it" but rather understanding which one of these is appropriate for you and which might be appropriate at different times for the same person.