Fatigue and Difficulty Sleeping
Fatigue is a very common problem in people with advanced disease and is characterized by a generalized decrease in energy and tiredness. Unlike the tiredness experienced by healthy person who works too hard or does not get enough sleep, fatigue does not resolve with rest or increased sleep. Weakness, on the other hand, is a loss of strength, often in extremities, and usually heralding a neurological problem. Fatigue, tiredness, and weakness are thus different problems though they may accompany one another. Though not as dramatic as pain, dyspnea, and other more identifiable problems, fatigue nevertheless is distressing to the patient.
Common causes of fatigue include the disease itself, secondary infections, effects of treatment (especially when associated with increased levels of cytokines* or cytokine markers), insomnia, anemia, malnutrition, dehydration, hormone shifts, prolonged immobility, depression, and/or emotional exhaustion. These causes and the fatigue often work to worsen one another, with, for example, malnutrition causing fatigue and fatigue resulting in insufficient energy to eat.
* Cytokines are proteins secreted by various cells and are involved in cell to cell communication, especially related to immune function. Among the cytokines are colony stimulating factors, tumor necrosis factor [TNF] and interleukins.
Interventions in Fatigue
Despite difficulties in intervening in fatigue, there are interventions to help people adapt, to some extent to fatigue. It is best if the cause of fatigue can be eliminated. Anemia, infections, and other causes are often amenable to treatment. Some other causes may be more difficult to treat. "Multiple sclerosis fatigue," chronic HIV infection, and immobility from advanced disease cannot in many cases, be treated.
Psychostimulants, especially methylphenidate (Ritalin) are effective in low doses for some patients, e.g., when fatigue is not die to anemia or dyspnea. These medications may also counteract the sedative effects of opioids.
When the cause cannot be changed, some relief is possible through changes in activities and environment. Prioritizing and pacing activities helps minimize fatigue. Activities that are most important such as eating should take precedence over those of lesser importance. It is also important to rest between activities, even when the person feels like continuing directly to the next.
Noting when the person is most fatigued usually shows that (1) fatigue increases as the day progresses and (2) fatigue is greatest after several back-to-back activities. So, do what is most important first, and rest, even when it does not seem necessary.
Reordering familiar aspects of life is difficult for many people, and in the context of illness, may be difficult to plan. But, whether in modifying schedule or environment, some change is necessary. Some activities can be carried out sitting rather than standing; and this in turn may require rearranging furniture. Placement of phone, medications, drinking water, toilet chair, and other essentials can significantly decrease energy expenditure. Some people find that moving the bed to a den or other living area increases the time family can spend together without tiring the person who is ill.
Heat tends to increase fatigue. Baths or showers should thus be warm, not hot; and the room temperature cool.
Fatigue can decrease strength, which in turn, can increase fatigue: The more fatigue, the less exercise, and as a result, the more fatigue. It is therefore necessary to maintain some level of activity as long as possible. This may only be getting out of bed and into a bedside chair on a daily basis or brief passive range of motion exercises. People who do not benefit from exercise include those with end-stage heart disease or those who are very close (days) to death from any disease.
In some cases, patient and/or family psychological state can play a role in fatigue. Depression and fatigue may work in a mutually exacerbating synergism. Indeed, fatigue is a cardinal symptom of depression (See depression in the section on Individual Issues and problems.
Almost all hospices have an occupational therapist (OT) on staff or available. Several consultative visits from the OT can give patients and families invaluable pointers, including assistive devices, on how to maintain or increase independence without increasing energy expenditure.
Insomnia may include difficulty falling asleep, frequent waking or poor quality of sleep, early waking. or some combination of these. Insomnia tends to increase with age, is more common in women than men, and increases with illness.
Difficulties from insomnia for the person who is ill include decreased mental acuity, tiredness and fatigue, impaired interactions with others as a result of the tiredness and fatigue, propensity for emotional difficulties, and even decreased resistance to disease progression, infection, or other physical disabilities. For caregivers and family members, the decreased level of function of the patient creates difficulties during the day. If the patient wakens others during the night, then there is sleep loss on everyone's part. If the patient does not awaken others during the night, then he or she faces the long nights alone.
One of the more common causes of insomnia in people who are ill is a disturbance in the sleep-wake schedule with increased amounts of daytime sleep and a concomitant decrease in nighttime sleep. Often there are schedule changes inherent in illness, including waking during the night for medications or as a result of symptoms. There may also be decreased responsibilities which result in regularly sleeping later than usual or frequent napping during the day. Other common causes include:
Management of Insomnia
The first intervention in insomnia is to address unrelieved physical and/or psychological or spiritual problems or issues - often a challenging task! One of my difficulties with this site is that I try to break problems down into seemingly simple issues and steps to solutions. If it were only that simple! Still, one of the goals in this site is to present problems in such a way that readers are not overwhelmed by the overwhelming.
Dying is overwhelming. A life is coming to an end; small wonder that one would lie awake at night questioning one's life, faith, and future. Interventions in insomnia include:
In all cases, the role of symptoms and personal or family issues should be addressed. Medicating a spiritual crisis that includes insomnia may have some short-term justification, but the larger spiritual issue should be addressed in ways other than through medications.
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