‘It becomes the new everyday life’ – experiences of chronic pain in everyday life of people with limb-girdle muscular dystrophy

Abstract

Purpose

To investigate experiences and reflections on challenges in everyday life of people living with limb-girdle muscular dystrophy (LGMD) and chronic pain in order to improve rehabilitation services.

Materials and methods

The design for this study was qualitative using the Interpretive Description methodology and the salutogenic theory of Sense of Coherence as the theoretical framework. Four semi-structured focus group interviews were conducted with 19 adults with LGMD from April to May 2021. The interviews were conducted online due to COVID-19.

Results

Living with chronic pain and LGMD affected everyday life in terms of the participants’ overall Sense of Coherence. Beneficial or unfavorable coping strategies were identified within four interrelated categorical themes: pain management, normality comprehension, affected emotional sentiment and altered identity.

Conclusion

Healthcare professionals should acknowledge possible chronic pain secondary to LGMD. Chronic pain appears to be a prevalent problem in people with LGMD with negative impact on everyday life, yet patients with LGMD did not receive sufficient information and necessary tools from health professionals to cope with chronic pain. Thus, adequate pain management appeared to be a difficult and self-taught process. Educating health professionals on how to support patients with LGMD and chronic pain is needed.

IMPLICATIONS FOR REHABILITATION

• Health professionals should acknowledge and address the possibility of chronic pain secondary to limb-girdle muscular dystrophy (LGMD) and educate patients in pain management.

• Physiotherapy, energy management and engagement in meaningful activities may help patients gain some control of pain and limit the consequences of pain on everyday life.

• Supporting patients to accept pain and to shift focus towards their current capabilities may potentially improve pain management.

• Educating health professionals on how to support patients with LGMD and chronic pain is needed.

Keywords:

• Limb-girdle muscular dystrophy
• chronic
• pain
• everyday life
• rehabilitation
• interpretive description
• sense of coherence
• qualitative research

Acknowledgements

We would like to thank all the participants who generously shared both their time and stories and participated in making this study possible.

Author contributions and agreement

All authors have made substantial contributions to all of the following: (1) the conception and design of the study, or acquisition of data, or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted.

Disclosure statement

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

Data availability statement

Data available on request from the authors.