Unravelling dystonic pain; a mixed methods survey to explore the language of dystonic pain and impact on life

Abstract

Purpose

Dystonia is a neurological disorder characterised by involuntary muscle contractions. Pain is the primary non-motor symptom, and limited studies have investigated how dystonic pain is experienced. This study aimed to investigate how people with isolated dystonia describe their pain and compare across subgroups of dystonia.

Methods

Anonymous online survey via social media asking participants to describe their pain in their own words, complete the McGill Pain Questionnaire (MPQ), and answer demographic questions. Thematic analysis identified common themes and frequencies were calculated for demographic and MPQ data.

Results

One-hundred and sixty-five respondents were included (mean age 51 years, 85% female). Thematic analysis identified four major themes “Physical sensations”, “Temporal features”, “Destruction”, “Impact on life” with several sub-themes. The most chosen MPQ descriptor was “exhausting” followed by “tight,” “sharp,” “pulling,” and “aching”. The most common descriptors showed similar prevalence across subgroups of dystonia.

Conclusion

As no objective tests for pain exist, pain sufferers must use language to describe their pain experience. People with isolated dystonia used sensory words combined with metaphorical language to detail temporal features of pain, as well as destructive internal battles or feelings of external forces acting upon them, and the significant toll pain has on everyday life.

Implications for rehabilitation

• Pain is a common and debilitating non-motor symptom for people living with dystonia and should be discussed in a persons treatment plan.

• Pain sufferers use language to discuss their pain experience with others and report they don’t feel well understood by others including health professionals.

• People with dystonic pain commonly described physical sensations, temporal features, destructive forces, and the impact on life caused by their pain.

• Findings suggest the experience of pain with dystonia is varied and better pain management options for people with dystonia are needed.

Keywords:

• Dystonia
• pain
• language
• mixed methods
• movement disorder

Acknowledgements

The authors wish to acknowledge Lynley Bradnam for advice with conception of the idea, and Drew Johnstone and Sam Liney for help with data collection, analysis, and drafting the initial manuscript. There are no conflicts of interest to declare and no funding was received for this study.

Disclosure statement

There are no relevant financial or non-financial competing interests to report.

Data availability statement

Additional data not reported in the paper can be found in Appendix 1.