Fatigue is common after brain injury

As you have already read, fatigue is one of the most serious problems after a brain injury. Whether it is a stroke or traumatic brain injury, or a brain injury by other causes, it really doesn’t matter much for the impact of tiredness. Both mental (cognitive) and physical fatigue. Although seemingly a distinction, I do not believe this distinction that is made between mental and physical. Your brain is just as physical as your liver or your stomach.

But enough of this academic talk. The theme on this page is on how-to treat or handle fatigue. On my page about Fatigue-and-brain-injury I already gave several explanations for tiredness after a brain damage. Here I will do the same with more scientific explanations. But I will do more. I will give the best treatment options for exhaustion. Because it is possible to fight it. And here I want to give the most basic tricks and tips about fighting tiredness. It is a summary of all that I know and have read about exhaustion and its treatment. And it has been verified but all those (more than 2500) patients I have spoken with brain damage. Because science is nice, and I value it sincerely. But…science isn’t everything and it is certainly not the whole truth and nothing but the truth… You have to weigh all the evidence, so evidence based practice and all the experiences of brain injured patients have to be taken into account as well. Backed by all those patients and their families, I feel pretty sure to give you the best treatment options for fatigue after brain injury. And I want to share it with you.

Fatigue after brain injury is – as you can read on my other page about it – a multi-headed monster. There are more explanations for it than just one and usually more than one are really valid. It is very rare that only one explanation plays a crucial role in causing tiredness. As an example, someone with a stroke can loose a lot of energy to drag his slightly paralyzed arm or leg when walking a short distance. Everyone can understand that. Just as easy as you can understand that underlying diabetes (one of the likely causes of this stroke) can be a causal factor for exhaustion, especially when the diabetes is poorly under control. And of course, a depressed mood after a brain injury, because of loss of independence and several hobbies, can be a legitimate reason to be mentally worn out as well. Finally, medication can be a reason as well, due to its side-effects.

But, how or what or who ever is causing tiredness does not really matter. Much more important is the fact that fatigue is fluctuating. As everything in life is. That basically means that there are also moments in which being tired is experienced less. And if that’s true, then a treatment can focus on increasing such moments. If that can be accomplished the net result will be that tiredness will be experienced as less dramatic. This sounds really simple and in fact it is! I will be very clear here about the knowledge we do have about fighting exhaustion successfully. I will describe shortly the method so everyone can benefit and learn to use this method in his or her daily life. Next I will explain in some detail the so-called difficulties that are mentioned to follow this method. So-called because such difficulties are made up by patients themselves!

The success formula to treat fatigue

The ‘secret’ formula to reduce or fight exhaustion is probably well-known by now and I have summarized all ingredients in one sentence: Do as much as you can in order to increase your fitness and be able to recover sufficiently from your activities. This formula consists of all proven factors that can reduce tiredness.

First of all, DO AS MUCH as you can. You’ll have to get on your feet to act. You will have to learn to fight against your tiredness by doing activities. How awful or miserable you feel, you’ll have to do them. Without doing, nothing will happen. Rest rusts. Our body and mind are built in an evolutionary sense to DO, to move, to perform activities. But not just that. Exclusively with doing, our stamina, our fitness, our mood, we will learn, we will move forward. By being passive your fitness deteriorates rapidly, your self-confidence does not grow, you will not learn anything, your mood worsens, in short: you will loose it. And…you will get more worn out.

Secondly, INCREASE YOUR FITNESS. This is essential. Without any improvements in your physical fitness, nothing will happen. Your hart-lung condition, your muscles condition, your joints condition, your blood vessels and organ conditions, will stay low. Your body needs to be challenged and needs practice to function optimally.

Thirdly, RECOVER SUFFICIENTLY. Recover from what you have been doing. The other side of building your fitness is that it costs you energy and time. So you will have to reload as well, something we call ‘recovery’. And that’s where it usually goes wrong: the large majority of patients dealing with exhaustion do not change their recovery moments correctly and do not synchronize with their activities. Why not? Why don’t they do that when they do know rationally that a correct balance between efforts and relaxation/recovery is essential for a good improvement of condition and a reduction of the experienced tiredness.

The largest difficulty in the treatment of tiredness

Possibly I have reached here the core of the largest difficulty in dealing with tiredness: a patient with chronic fatigue does not have any correct sensors anymore to notice what is good for his fitness or body. The experienced tiredness is not correct or reliable anymore, this experience is deranged, disturbed. You can no longer trust your own experiences! To understand this I have to explain a bit more about this. Exhaustion, just like pain, anxiety or sadness, is in your brain. Your brain does decide whether you feel exhausted or not. They do that by trusting signals they get from inside the rest of the body. This can be the state of your blood pressure, your heart beat, your breath, your muscle aches. But also several hormones or other chemicals that are released with doing activities. Now it is known and shown in science that the interpretation of such physical signals can be manipulated. Your brain does not have to conclude or interpret all those signals as meaning that you are exhausted. Just as with pain. An example? Well, just think of a football match. A footballer can be very exhausted when his team is behind with a score of 1 to 3. However, when just 10 minutes before the end signal his team reduces the score to 2 to 3, this same guy can have a boost of energy and then he does not feel any exhaustion anymore. Not because he is taking in some energy drink or special food. No just because his brain is being focused on new (hopeful) ideas about perhaps winning the match, his exhaustion seems gone.

This is a clear example of how physical signals can be interpreted differently by our brain. In favor of our fitness. However, this ‘twisted’ interpretation of physical signals (signaling being tired) is a temporary one, when all is normal. Because, afterwards such a football player will indeed be exhausted, even after an even score of 3 to 3. His body will ‘yell’ for rest, relaxation and recovery. And whenever this need will be ignored repeatedly, then this interpretation process of tiredness signals can get disturbed or damaged. So seriously that eventually your body will be harmed without taking the necessary rest. And worse, your brain’s mechanism to interpret bodily sensations or signals correctly will be completely disturbed. That can result in experiencing even the slightest signals as an enormous exhaustion. The total feeling then will be: complete exhaustion and not being able to do anything at all. That’s exactly what is known as burn-out. So burn-out is both an exhaustion of your body and a serious disturbance in your brain. More specifically, the regions that are responsible for correctly interpreting bodily tiredness signals. Such regions are more or less known to scientists. Interesting links to articles about mental fatigue are shown below.

For people who think that the above text is mere speculation I have found a PhD thesis about mental fatigue from a Dutch colleague, Maarten Boksem: Mental fatigue: costs and benefits. He showed in his research that mental fatigue can be traced back to physical processes. Nothing new really, since I do not believe in souls or spirits. Our brain is purely physical, so all experiences are physical in origin. Maarten shows that especially dopamine (a neurotransmitter: a messenger chemical in the brain) but also serotonin have a lot to do with regulating fatigue. A reduction in dopamine can make you feel fatigued. 

However, what he does not explain and can not have researched as well, is that not only dopamine plays a role in fatigue. Although one of the most common chemicals in the brain, there are a lot of other neurotransmitters as well (more than 100). It would be very unlikely that only dopamine or serotonin are responsible for fatigue. Due to its dynamic nature of the brain, it is much more likely that a change in dopamine levels will result in changes in other neurotransmitters as well. However, a science project such as a PhD study can not even measure all known substances of the brain in just 2 years. So by definition, science is reducing reality. I will bet my month salary that in a couple of years more chemicals will be held responsible for the feeling of fatigue. However, it is nice to see that Maarten’s work has made it possible to link chemicals to such a difficult and subjective concept as ‘mental fatigue’. Now fatigue can be taken seriously as a psychological entity. The link to Maarten’s article in English can be found here:

The above mechanism probably is valid for other chronic conditions as well like chronic pain, chronic high muscle tension, chronic sleep disorder. But probably also for an eating disorder like anorexia nervosa. With anorexia it is known now that there is a disturbance in the brain in the body image and probably as well in the feeling of hunger. In other words: whenever you eat too little and constantly see yourself in a mirror as being too fat, then there could be a moment of a severe disturbance of bodily signals. We do know that a disturbance of our body image in the brain can develop very quickly. But we can also adapt to it very quickly. In experiments in which mirrors are used to change our body image, the brain can be fooled quite easily in a matter of hours. Of course, removing such mirrors and looking in a normal mirror will bring the original body image back ‘online’ quickly.

What I especially want to make clear is that our brain is a network that is very dynamic. It can be manipulated very easily. Especially when the manipulation is constant, each day, every minute by feeding the brain with wrong information. Such a changed brain configuration can be found via imaging techniques or Magneto Encephalography (MEG), but our techniques are not quite optimal yet to see all subtle changes in the brain. Furthermore, we do not even know whether whát we see is indeed normal or a disturbance. For that we need much more data on healthy subject’s brains.

The actual treatment approach to fatigue

All the above sounds great but hów exactly is then the approach towards fatigue, using the above formula? To explain this even more I have made a graphic that presents the essence of a training programme for chronic fatigue (or pain). With this graphical presentation I can better explain to you what you should do to lessen your fatigue. Whether you’ve had a brain injury or a cancer or any other serious disease. The approach is almost universal.

In the graphic a wrong approach to fatigue has been drawn in which the red line depicts the ultimate average outcome. This outcome trend is directed downwards: you’ll become and will stay a victim of your fatigue and you’ll never recover. Largely because you take too many steps in doing things. So much so that you have to pay for it severely, with a large relapse in which you have to abide with forced rest because your body demands it. Then after such a period of forced rest, there will be a moment that you feel good again. And then, well, you can be running again, taking too many steps again. A repetition of this so-called ‘yo-yo effect’ can go on and on and eventually you will loose. Fatigue wins with damaging results for your body, burning up totally.

The correct approach is the one with the green line that shows a trend upwards. How come? Well, mainly because you get wiser in the end and start to realize that when you are feeling well you just keep calm and rigidly adhere to your training programme. And doing a small step, a small activity, not costing you a large amount of energy. But doing it as well when you just feel miserable! You have to follow your training programme, no matter how you feel. Taking it slowly but consistently will take you upwards. The essence is that you do activities with wisdom, within the limits of your true capacities. When you practice this you will notice that you will get a relapse after a small activity, but such a relapse will be shorter and less intense than after a large peak load. That also means that in the same time you will do twice as much activities (in the graphic 8) than in the case of peak loads (4 in the graphic). So actually you are doing more! With the positive effect that you will feel better and proud, and your condition will be improved in doing more activities. So remarkably, by constraining yourself and following a strict training programme, with smaller steps you will end further and reach your goals much quicker than when you move forward too quickly.

Is it that simple?

Sure it is! Smart people will quickly embrace this philosophy and be successful. As a psychologist, most of my time is spent on convincing not so smart people to use the treatment programme. And some people will never learn…ever…they are not capable to follow this treatment approach. Mostly because they are very stubborn, inflexible. Luckily, this is only a very small group. The largest group of people with chronic fatigue consist of people who do not feel anymore what a normal activity is and what a peak load is. They honestly do not know when they went too far in doing their activities. For that occupational therapists have developed so-called activity measures in which normal activities get points. Just like in following a diet: each food gets a number of points. A cake gets more points than an apple. Seeing an action movie gets more points than reading a couple of pages in a magazine. Normally I use a simple formula with which I weigh emotion related activities as being 6 times heavier than normal physical activities. In this sense, visiting a birthday party at a not so beloved sister or brother, can easily get 30 points (energy cost) instead of a garden job that takes just the same amount of time and gets only 15 points. This is not just speculation but it is based on newer insights in the field ofpsychoneuroimmunology: the science of the relation between brain and our immune system. Knowing that chronic stress (intense emotions) negatively and heavily influences the immune system.

Within the field of rehabilitation we teach people to estimate correctly what takes more or less energy, and when they have to do small activities and when they should rest. For example, ironing can be done in 2 hours on one day (peak load) or it can be done in several quarters of an hour distributed over 3 days.

Some examples of energy-consuming activities

To make it a bit easier to see what a peak load is and what is not, I will give several examples. Hoping that you will understand better what costs more energy for your brain. In this way you can learn to make a programme for a week with the right balance between actions and relaxation (relaxation or rest does not mean just lying down!).

1 hour shopping on a busy Saturday costs a lot of energy. There are many different people on the street, in the stores and you’ll have to find your way between them. You’ll get a lot of changing images towards your brain which have to be processed. Finding the right stores and articles you want to buy. Having some stress to find all these in a certain time. A lot of women find this kind of shopping very pleasant. However, their brains still have had a peak load. But they will not interpret it like that, it doesn’t feel like pain and much more important: they shopped with success. Having found new clothes or shoes and that is a strong reward. Feeling a bit tired but oh so happy at home.

1 hour shopping on a Saturday morning costs less energy. There are less people around, you can find articles much quicker. Although it is less cozy for the normal shopper. But for the brain this is less of a peak load than the above example.

visiting a birthday party of a 8-year old and assisting as a parent. This costs much more energy than just working for a couple of hours. Why? Well, here emotions play an important role and…the non-routine activities. Being at such a birthday party you have to monitor much more than at your work. Is everything going smoothly and safely? There is much more noise, more hectic and children can constantly ask you anything. Also the sound volume is quite high usually and the room gets warmer than normal (all known stressors). Your brain has to process a lot. People who can shut themselves down temporarily can manage and will not be that exhausted afterwards. However, working for a couple of hours is much less intense: you know what you are going to do, there is hardly any stress, and no real unexpected businesses. Your attention system is in default resting mode. In such a birthday party your attention system is put to the test, watching all those boys with a heightened sense of responsibility for their safety and well-being. Of course, some parents don’t care any less, such an attitude indeed puts no real strain on them. But I am not such a parent.

1 hour reading or watching TV. What is more exhausting? It depends on the complexity of your book. If the text or story is very complicated than your brain is doing overtime. If you are watching a soap that is less tiresome than watching a documentary. A soap has very simple story lines, so not much attention or planning has to be done. A documentary is much more attention demanding, to follow all that is being said.

1 hour driving on a highway in Norway or 1 hour driving in New York city. Take an educated guess. Of course, driving in the middle of New York is much more tiring. It demands much more of your attention system than driving on very quiet roads, even when you are not familiar there.

following a conversation or a speech of someone who is not so to-the-point. Or of someone who is very clear and to-the-point. In the first case, your brain will do much more work to just follow that person, follow his story. Such speakers are more tiresome and often boring. No wonder sleep sets in sooner because you will get tired much more easily with them.

Summary: best treatment for fatigue after brain injury

Fatigue of course is something physical, but contrary to what everyone thinks, it happens mainly in your head, in your brain. As has been shown by someone like Maarten Boksem, a fellow patriot. Especially a lowered level of dopamine and serotonin play an important role in experiencing fatigue. The hypothesis is that fatigue is something positive: a warning signal to change our behavior to prevent further damage to our body. Ignoring this warning signal constantly and for a longer time can lead to a serious biochemical disturbance in the brain, something I have called a ‘disturbance in the correct interpretation of bodily signals. This can lead to the chronic fatigue syndrome and the literally burn-out of your body.

Of course brain injury almost always leads to more fatigue (as explained on another page). To correctly interpret this kind of fatigue it is very important after a brain injury to balance your actions and your resting periods. The graphic shown earlier can help you with this. Gradually and consistently building up your activities, on a time-dependent basis instead of trusting your disturbed feeling of fatigue, will eventually lead to more activities and more fitness and a diminishing feeling of fatigue. But…fatigue probably will not disappear completely. Depending on how serious your brain injury and other physical injuries have been.

Call for comments or reactions

I gladly welcome every one to tell their story about fatigue. Fatigue after brain injury, after a treatment of cancer or other disorders. I am especially interested in stories in which people show how they deal with their fatigue and how they have got stronger. Is it just like the method I have explained here? Or is it completely different? Are there ‘wonder’ therapies out there to fight fatigue? Please write your story down, here, on the special forms, anonymously or with your (nick)name. When I think it is a great story I will put it on this website. So others can be helped as well with your stories.

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Recommended books about fatigue

A state of the art book about fatigue after brain injury from one of the best neuropsychologists around:

A new complete overview about cognitive fatigue seen from different science perspectives; highly recommended!