The experience of living with fibromyalgia for women in Newfoundland : a phenomenological study

Sturge-Jacobs, Marilyn (1997) The experience of living with fibromyalgia for women in Newfoundland : a phenomenological study. Masters thesis, Memorial University of Newfoundland.

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Abstract

Fibromyalgia (FM) is a complex, chronic, painful musculoskeletal syndrome which is characterized by extreme fatigue, disordered sleep, and other associated physical and cognitive problems. Because its etiology is unknown, and because no specific pathophysiological mechanisms have been found to underlie the syndrome, making a diagnosis is very difficult. FM adversely affects the quality of life, and the societal costs based on medical expenses, lost wages, lost tax revenue and compensation expenditures are very significant. -- The purpose of this phenomenological study was to describe, and enhance the understanding of the experience of living with FM. The participants included nine women ranging in age from 30 years to 56 years who had been diagnosed with the condition for more than a year. The data were collected by means of unstructured interviews. Thematic analysis, utilizing van Manen's (1990) methodology, identified eight themes: (1) pain – the constant presence, (2) fatigue - the invisible foe, (3) sleep - the impossible dream, (4) thinking in a fog, (5) dealing with a flare-up, (6) longing for a normal life, (7) the power of naming - seeking a diagnosis, and (8) living within the boundaries. These themes were integral parts of the whole story, and through their interrelationships, the essence confronting an invisible disability77 was captured. -- Those who administer the health care system will experience many challenges as they face the new millennium, and one of these challenges will be how best to cope with the increasing number of persons with a chronic illness. The findings of this qualitative research study about fibromyalgia, a chronic illness, have implications for future nursing practice, education and research, and consequently for the health care system in general.

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