Chapter 9. Psychosocial Aspects of Pain and Fatigue
Alexandra McCarthy
This chapter discusses:
■ the psychosocial issues associated with pain and fatigue in chronic illness;
■ the characteristics of pain and fatigue;
■ issues to consider in the assessment of pain and fatigue;
■ the ways that pain, fatigue, anxiety, depression and sleep dysfunction are inter-related in chronic illness; and
■ interventions to improve the psychosocial outcomes of clients who experience pain and fatigue associated with chronic illness.
The purpose of this chapter is to give you an insight into the psychosocial dimension of the pain and fatigue that are often associated with chronic illnesses. Rheumatoid arthritis is a typical example of a lifelong and lifechanging condition that is usually accompanied by pain and fatigue. For example, all people who have flare-ups of rheumatoid arthritis experience acute pain, and some degree of chronic pain is reported in as many as 83% of all rheumatoid arthritis clients (Stone et al 1997). Similarly, between 33% and 100% of people with rheumatoid arthritis report a consistent lack of energy, with more than one-third displaying significant levels of fatigue (Crosby 1991, Belza 1995, Wolfe et al 1996, Stone et al 1997, Fifield et al 1998). A case study of rheumatoid arthritis will serve as our example in this chapter. It will demonstrate the complexity of the relationship between the physiological, psychological and sociological variables that influence pain and fatigue, and how this complexity must be appreciated in order for us to care for our clients well.
Fiona, is a 45-year-old professional woman, who is married with two children under the age of 10 years. Fiona was diagnosed with rheumatoid arthritis by her GP and, after she continued to report increasing joint pain, stiffness and continual tiredness, the GP referred her to a specialist for more intensive management. Fiona’s story, an excerpt of which follows, is very typical of people who experience rheumatoid arthritis.
‘I remember I was so anxious about what the specialist would say—I thought he might think I was malingering or something. I wondered whether he would believe me, about how incredibly tired and down I was all the time, and how much the pain and stiffness got in the way of my work and doing even normal things at home. At home I’d get teary because my husband and kids had to take on more and more of the jobs around the house and it was causing a few arguments. I was really anxious about how it was affecting my performance at work and I was very worried that I’d get the sack if I took too many days off. I was really busy at work,pretty overloaded, and even I thought that all that was wrong with me was a bit of stress …
… I really thought the specialist would just give me a script for an antidepressant to cheer me up and a sleeping pill to get me off to sleep at night. I had no idea that he would tell me what I had was forever, and that it would get worse from time to time, and that the whole family would have to make adjustments for my rheumatoid arthritis. And he gave me a pile of scripts for pain medication and pills to stop my joints flaring up all the time, and a referral to an occupational therapist for splints, and to a physiotherapist for exercises. All I could think about was how am I going to manage all that plus what I have to do already when I’m feeling so awful?’
Fiona’s story illustrates very clearly the close relationship between physiological variables like pain and fatigue and the psychosocial context in which they occur. It demonstrates that while it is important to identify and treat the physical causes of chronic illnesses like rheumatoid arthritis, we also need to look at the ways that chronic pain and fatigue also affect the client’s long-term lifestyle choices, their family and working life, and their emotions. We also need to be aware that the psychosocial aspects of pain and fatigue have the potential to affect the person’s physical health outcomes in a circular fashion. This is because they affect a person’s ability to perform their normal activities of daily living, such as maintaining the exercise and diet programs that help prevent ill health.
As you work through this chapter, you will come to understand that the physiological and the psychosocial aspects of chronic pain and fatigue are so closely linked that if we address only one aspect while ignoring the other, then our efforts to help the client will probably be ineffective. We need to understand what pain and fatigue are, and then the different elements that contribute to pain and fatigue in chronic illnesses, before we can identify appropriate interventions for care.
We’ll begin with a brief overview of the physiological cause of Fiona’s pain and fatigue, and look at how it influences the larger psychosocial picture. Then we’ll look at the way that the psychosocial aspects of disease in turn influence her physical health outcomes.
Pain
This section will explore the physiological bases of pain and fatigue and then review definitions and characteristics of pain and how to assess the pain a person is experiencing.
The cause of pain and fatigue in rheumatoid arthritis
Rheumatoid arthritis develops when the immune system, for reasons unknown, becomes dysfunctional. The immune impairment usually results in inflammation of the joints, but other connective tissues, such as blood vessels and the linings of the heart and lungs, can also become inflamed. Because it is mainly the structure of the joints that is disturbed, rheumatoid arthritis results in progressive swelling, contraction, and deformity of these areas. The inflammation can cause a great deal of pain and stiffness, particularly in the joints. Joint stiffness also means the person cannot move as freely, leading to the muscle wasting that often underlies the development of fatigue.
Unfortunately, while pain and fatigue are common symptoms of rheumatoid arthritis, they can be very difficult for nurses to isolate, measure and assess. For example, we cannot see pain or fatigue. There is also debate as to what pain and fatigue actually are, because pain and fatigue are so dependent on the description and interpretation of the person who experiences them. These difficulties are further complicated by the nature of the pain and fatigue in rheumatoid arthritis, which fluctuates between acute, chronic, and remission phases over the course of the illness. Similarly, clients who are in the same stage of the illness may experience pain and fatigue very differently, with some severely affected and others barely noticing it. There are some consistencies across these symptoms, however, that enable us to arrive at definitions that are useful in psychosocial assessments.
Definitions and characteristics of pain
Definitions of pain vary from the strictly physiological to those that reflect a more holistic worldview. One of the most useful definitions of pain was proposed by the International Association for the Study of Pain (IASP 1979, p 242):
Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. Pain is always subjective.
This is expressed more simply by McCaffery & Beebe (1994), who propose that pain is whatever the person who experiences it says it is, occurring whenever that person says it does.
These definitions are useful within the psychosocial context because they incorporate factors other than the purely physiological that contribute to pain. That is, the role played by psychosocial factors, such as emotions and the events happening in the person’s life at the time, is accounted for. These definitions are also useful because:
• Pain is always assumed to be subjective, meaning that one person’s experience of pain is not necessarily the same as another person’s, but it is pain nonetheless.
• Experience of pain is acknowledged to be different between individuals—that what may trigger severe pain in one person may only mildly affect another.
• It is assumed that a person is in pain if they say they are, and a person’s experience of pain must not be denied.
Pain assessment
Based on these holistic definitions of pain, a thorough pain assessment that is grounded in the client’s description is extremely important. An important first step in pain assessment is to differentiate chronic pain from acute pain, which has different origins and different treatments.
Acute pain is usually caused by an obvious injury or illness. It tends to have a defined onset and lasts for a certain period of time, and is easy to treat in comparison with chronic pain. In rheumatoid arthritis, for example, flareups of the condition will cause an acute pain that is relatively easy to relieve with anti-inflammatory and pain medication. Acute pain is also identified by its effects on the sympathetic nervous system, so that clients become anxious, with a raised blood pressure and pulse rate. These very obvious symptoms of injury, raised pulse and blood pressure tend to prejudice people’s views of what the person in pain should look like. As a result, most people think that people complaining of pain should have an obvious injury or cause for their pain, and show definite signs such as grimacing that demonstrate it. This is often not the case with chronic pain.
In contrast to acute pain, it is often not easy to determine exactly when and why chronic pain begins. More often than not, it has a subtle onset that is difficult for the client to pinpoint. In general, chronic pain begins as a response to long-term disease processes. It is usually present for longer than six months before it is diagnosed as chronic. Unfortunately, the difficulty in ascertaining a definite cause for chronic pain, and the way it tends to linger, may elicit a lot less understanding from other people (including nurses) even when a person is definitely known to have a condition that can cause pain. For example, people with chronic pain may appear depressed and lethargic and, therefore, they can be difficult to relate to if you do not know them well. Furthermore, because they have become so accustomed to the presence of pain, there is little reflex stimulation of the sympathetic nervous system. This means that people with chronic pain rarely display the ‘obvious’ symptoms of pain such as grimacing, or raised heart rate and blood pressure. In fact, their physical signs are usually quite normal, and this may prejudice others into thinking they have no pain at all. Chronic pain is just as debilitating as acute pain, however, and should be taken just as seriously.
Fatigue
This section will explore definitions and characteristics of fatigue as well as how to assess for fatigue.
Definitions and characteristics of fatigue
Like pain, fatigue is also hard to define and assess, as it is such a subjective experience. Nurses, who are trained to make judgements on the basis of what they can actually see and measure, are not readily able to do so with fatigue and are therefore generally reliant on the client’s description of the experience. Unfortunately, the way the nurse actually interprets the client’s description of their fatigue is not necessarily an accurate reflection of what the person is really experiencing. The factors that might colour the nurse’s interpretation include the quality of education they have received about fatigue themselves and the way they have been socialised to think about fatigue.
However, our understanding of fatigue is gradually improving with a more holistic focus. One of the best definitions of fatigue identifies it as a subjective feeling of tiredness, that may or may not be related to activity, which becomes problematic in chronic illness because it leads to disruption of daily activities and cannot be relieved by rest (Fishbain et al 2003). Like our definitions of pain, this definition recognises the subjective rather than objective nature of fatigue. This definition also incorporates the difficulties that fatigue causes in daily life; and that it is what the person experiencing says it is.
Fatigue assessment
People with rheumatoid arthritis generally experience both acute and chronic fatigue through the course of their illness. Like the experiences of acute and chronic pain, the experience of acute fatigue is different to that of chronic fatigue. It is important to differentiate whether fatigue is acute or chronic, as they often have a different origin and different effects on the client and, therefore, different treatments.
Acute fatigue is episodic in nature, with a rapid onset and a quick resolution. In rheumatoid arthritis clients, acute fatigue is generally associated with obvious triggers such as over-exertion or flare-ups of the disease that result in increased joint pain. Acute fatigue can often be successfully and rapidly relieved with anti-inflammatory medication and rest. In contrast, similar to chronic pain, it is difficult to pinpoint a cause for chronic fatigue and it may not even be related to the person’s activity level. The chronic fatigue produced by illnesses such as rheumatoid arthritis is a persistent, cumulative sensation not relieved by resting. In fact, rest can exacerbate chronic fatigue. Chronic fatigue also has a significant psychosocial component, so both these factors must be addressed for it to be relieved (Crosby 1991, Belza 1995, Wolfe et al 1996, Barsky et al 1999).
The pain/fatigue complex in chronic illness
Consistent with the definitions of acute and chronic pain and fatigue outlined above, the psychosocial approach to illness views the factors influencing levels of pain and fatigue as numerous and interrelated. There is evidence, for example, that the physical causes of pain in cases like Fiona’s include tissue degeneration and joint restriction. Other evidence demonstrates that the physical causes of her fatigue may include progressive muscle weakness and the tiredness that is a common side effect of various medical treatments (Gentile et al 2003). Commonsense would also tell us that these physiological variables interact with each other, for the more severe the pain and the longer it lasts, the greater the chance of developing fatigue (Brandt 1997, Fishbain et al 2003).
However, the physiological variables that contribute to pain and fatigue are also influenced by psychosocial variables in an additive and interactive fashion. This is because the physiological sensations of pain and fatigue have a peripheral, sensory component that is processed centrally in the brain, which then determines our behavioural response. The way the brain processes the sensory components of pain and fatigue is profoundly influenced by (Barsky et al 1999):
• the way we have been socialised to view pain and fatigue;
• our emotional state at the time we experience pain and fatigue; and
• our previous experiences of pain and fatigue.
For example, if Fiona has learnt from her past experience that a flare-up of her joints will lead to pain, she is more likely to become depressed about that flare-up, and her depression may subsequently influence her perception of her pain in a negative way. Similarly, if Fiona has been exposed to work cultures that view taking a ‘sickie’ for chronic fatigue as malingering, she will be anxious not to take time off to prove her work ethic. She will then strive to work harder despite her tiredness, ending up more tired than ever—and possibly cause a flare-up of her condition that will result in even more pain and fatigue.
The physiological variables contributing to pain and fatigue not only influence each other but can be a cause and effect of pain and fatigue as well. We can see that a physiological factor like pain can result in the psychosocial factor of depression and that, in turn, depression can influence pain. Similarly, the psychosocial variable of cultural anxiety can contribute to the physiological variable of fatigue, and fatigue in turn can influence the level of anxiety. The additive and interactive nature of this process highlights how closely interconnected chronic illness, pain, fatigue, emotional disturbances and social disruption are. Fiona’s case history is a good example of how a combination of the chronic disease process, the demanding treatment regimes, the psychological adjustments, the alteration of social roles, and the views of significant others within the person’s social context are part of a complex of factors that contribute to the person’s experience of pain and fatigue (Belza 1995, Brandt 1997, Schuman 1997, Strahl et al 2000, Sinclair 2001, Barlow et al 2002, Gentile et al 2003). The following discussion will tease out three major psychosocial components of pain and fatigue, and the ways that one variable can sustain another to produce chronic pain and fatigue. These variables are anxiety, depression, and sleep disturbance.
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