Sick and Tired: Understanding and Managing Sleep Difficulties in ...

life in comparison to the general population (Epstein et al., 1999; Martinez et al., 2001)
and experience higher levels of pain and quality of life than people with other chronic
pain conditions, such as rheumatoid arthritis (Callahan, Smith, & Pincus, 1989). People
with FMS frequently report that their experience of symptoms varies over the course of
a day, with greater levels of pain and fatigue in the late afternoon/evening (Arnold et al.,
2008). People with FMS have described that the fluctuating and unpredictable nature of
pain, fatigue and cognitive impairment can make planning and pacing activities difficult
(Arnold et al., 2008; Cunningham & Jillings, 2006). The fluctuating natures of
symptoms can lead to difficulties in maintaining social relationships and reducing their
engagement in activities as they unable to commit to scheduled arrangements (Arnold et
al., 2008; Cunningham & Jillings, 2006; Lofgren, Ekholm, & Ohman, 2006). Symptoms
appear to be interconnected, with pain, fatigue, poor sleep and cognitive difficulties
each being affected by the other (Arnold et al., 2008).
As mentioned, earlier in this chapter, the impact of the symptoms of the condition may
be perpetuated by a feeling of the lack of credibility, the invisibility of symptoms and
low public awareness (Arnold et al., 2008; Lempp, Hatch, Carville, & Choy, 2009;
Madden & Sim, 2006; Sim & Madden, 2008; Undeland & Malterud, 2007). Qualitative
studies have revealed that many people with FMS experience negative interactions with
the medical profession and are perceived to be „difficult patients‟ by clinicians (Lempp
et al., 2009). This may reflect the frustrations of both the patients and the medical
profession due to the lack of availability of effective treatment options and only recent
advances in understanding the pathophysiology of the condition (Arnold et al., 2008).
Due to the lack of understanding about the condition and few treatment options, social
relationships can become strained, and many people with FMS have described losing
their self confidence, sense of personal control over their lives and experiencing social
isolation and loss of intimacy with others (Arnold et al., 2008; Lempp et al., 2009; Sim
& Madden, 2008). The burden extends to families and partners who also need to adapt
to the person‟s illness by taking on additional tasks, experiencing a change in social
roles and learning to adapt to the variable nature of the person‟s symptoms (Soderberg,
Strand, Haapala, & Lundman, 2003).
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