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

Amanda AmbergMonique CrispinLuis KoeppenkastropImogene MundayAlana B McCambridge
Published in: Disability and rehabilitation (2022)
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 rehabilitationPain 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.
Keyphrases
  • pain management
  • chronic pain
  • neuropathic pain
  • clinical trial
  • autism spectrum disorder
  • early onset
  • randomized controlled trial
  • spinal cord
  • physical activity
  • cross sectional