“I just want my life back!” - Men’s narratives about living with fibromyalgia

Abstract

Background: Fibromyalgia is characterized by chronic widespread pain and an array of other symptoms. It is less common among men than among women and the results concerning the severity of men’s symptoms are contradictory. The purpose of this study was to elucidate the impacts of fibromyalgia on men’s daily life and work ability.

Methods: The data were collected through life story interviews of five men with fibromyalgia.

Results: The results of a narrative analysis are presented in a form of two model narratives: “Adjusting the life to match the illness” and “Being imprisoned by the pain”. The first narrative is a description of finding a balance between the illness and wellness, whereas the second is an account of debilitating symptoms, unsuccessful treatment, and rehabilitation interventions.

Conclusion: The results suggest that adjusting one’s activities may help to manage the symptoms and to support work ability in many cases but for some patients the experience of feeling healthy or pain free might be nothing but a fading memory. Narrative approach is well applicable to rehabilitation of patients with fibromyalgia: an illness narrative may help the patient and professionals to understand the situation better and to set realistic and relevant goals for rehabilitation.

Implications for rehabilitation

• In addition to chronic pain, men with fibromyalgia suffer from daytime tiredness and cognitive challenges that substantially interfere with their work ability and daily functioning. Vocational rehabilitation interventions, including e.g., adjustments of work tasks and hours, should be started early on to support work ability.

• The results indicate that psychosocial support is needed to improve health related quality of life of patients with severe and complex symptoms, especially if return-to-work is not an option.

• Men with fibromyalgia seem to lack peer support both in face-to face groups and in on-line groups. “All-male” support groups could be explored in rehabilitation settings in the future.

• Using a narrative approach in rehabilitation might result in a shared understanding of the patient’s situation. This could help the professionals to set more individual, realistic, and relevant goals for rehabilitation, which in turn might improve rehabilitation outcomes.

Keywords:

• Chronic pain
• work ability
• rehabilitation
• men’s health
• qualitative research

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The research leading to these results has received funding from the European Union Seventh Framework Programme (FP7-PEOPLE-2013-COFUND) under grant agreement n°609020-Scientia Fellows.