Chronic fatigue in CML
Severe and/or chronic fatigue is a common problem if you have chronic myeloid leukemia. People will often tell you that you'll have to learn to live with it. Fatigue has a major impact on the quality of life in all areas. However, there is certainly something to be done about it. Even though the fatigue cannot be relieved due to the nature of the disease or the medicines you use, you can learn to deal with it differently, so that you experience fewer problems.
What do we mean by fatigue in case of CML?
In patients with CML, fatigue is best described as a predominant sense of exhaustion and reduced capacity for physical and mental exertion. Typical of fatigue in this context is that it can occur suddenly and without warning. It is often not linked to a certain effort; the fatigue can be extreme, and it can take longer than 'normal' before you recover, if at all.
How often does it occur?
These are the figures: 90% of cancer patients are fatigued during treatment; in 25% the fatigue becomes chronic. (source: HDI)
What causes fatigue?
There are 'triggering factors' such as the disease itself and the treatment with TKIs, but also chemotherapy, radiotherapy, surgery, stem cell transplantation, hormone therapy or other treatments with medication can be provoking factors for fatigue. In the long run, it is often the 'sustaining factors' that play an important role in the suffering caused by fatigue. These are factors such as the psychological processing of the disease and its consequences, fear of the periodic lab tests, loss of confidence in your body, a disturbed sleep-wake rhythm, unhelpful thoughts or ideas about fatigue, a disrupted activity pattern. Also the expectations the patient has about their environment, and the environment's expectations about the patient, play a role.
What are the effects of fatigue?
Fatigue affects your activities, your relationships, your work, your social relationships and therefore your joy of life. You may not be able to do everything you were used to doing. It can also affect the quality of your sleep, due to restlessness and/or worrying. It can affect the relationship with your partner, because of a loss of libido, or because you cannot stand to be touched. It may be that you no longer go to parties because of the crowds, the excess of stimuli or because you dread going. Your partner, your children or others have to consider your limited capacity, etc. You may be angry about it, or you may feel guilty, sad or sullen. Your environment can also have wrong expectations of you. For example, they may think that you are okay now; you show no visible signs of the disease, so you must be doing well? It may well be that you act as if everything is going well and you push yourself too far, trying to act as normal as possible. Or you expect yourself to be able to do just as much as before you fell ill. At work, you may be able to handle fewer tasks, or your concentration is suffering; your memory may be failing, you are too tired to travel or to work the hours you were used to. Although you can experience all of this, many of these examples may stem from unhelpful thoughts and convictions. By learning to influence these thoughts, you can gain more control over your fatigue.