Purpose: The aim was to explore personal experiences of pain in people with motor neuron disease.Materials and methods: Sixteen participants were individually interviewed on one occasion concerning their experiences of presentation, consequences, and management of pain. Qualitative content analysis with researcher triangulation was used to synthesize and interpret data.Results: Four themes emerged as the result of the analysis: (1) The multiple faces of pain, (2) The thin line between experience of pain and no pain, (3) The negative effects of pain on role functioning (4) Successful coping with pain requiring personal effort and competent engagement. The important findings were the experiences of unpredictability of pain breakthroughs, the efforts required to manage pain, consequences for activity and quality of life, and the suffering induced by diminishment and neglect of pain from both patients and staff.Conclusions: Pain in motor neuron disease seems to have certain and multiple characteristics, which is why there is a need to develop and implement pain assessment methods adapted to this population. Such methods may help make pain more predictable, and increase the possibilities to provide effective and individually tailored pain treatment.IMPLICATIONS FOR REHABILITATIONPain is a common, but often neglected, ailment in motor neuro disease, which deserves more attention from health care.Staff should provide information about the pain being possible to treat successfully with medication, by contrast to the possibility of curing the disease itself.Pain assessments should be implemented during the entire course of the disease, covering a time frame long enough to cover characteristic fluctuations of pain.Whenever possible, facilitate the performance of painful activities of daily living as much as possible to make room for engagement in other personally valued activities of importance for individual quality of life.
Keywords: Amyotrophic Lateral Sclerosis; coping; motor neuron disease; pain assessment; pain management; qualitative content analysis.