Pain and Fatigue in NMD, Prevalence and management

Number 184
Date 23 May 2011

The 184st ENMC workshop titled “Pain and fatigue in NMD: prevalence and management” was held in Naarden, the Netherlands, 20-22th May 2011, with representatives from Western and South Europe and USA.

What was the aim of the workshop?

The aim of the workshop was to establish definitions for pain and fatigue in neuromuscular disorders and possible measurement instruments. This will guide the management approaches.


22 persons with different specialities: neurologists, rehabilitation physicians, physiotherapists, occupational therapist, neurophysiologists, researchers, psychologists and patient representatives of  various countries (USA, Netherlands, France, United Kingdom, Sweden, Denmark, Germany, Italy)

What was achieved?

After exchange of knowledge, studies and a broad discussion the following was established:

  • Despite many different NMD and many different ways used to measure pain and fatigue are a major, common problem in adults and children in NMD.
  • Pain and fatigue are defined as being multidimensional experiences and definitions have been established
  • Pain and fatigue should be measured by a proposed core-set in clinical settings: proposed are Numeric Rating Scales or Numeric Faces for children for both pain and fatigue; for pain also Brief Pain Inventory, Hospital Anxiety Depression Scale, and possible organic/biomechanical causes of pain; for fatigue CIS (Checklist Individual Strength) or FSS (Fatigue Severity Scale) and possible organic/biomechanical causes for fatigue
  • No treatment approaches were discussed
  • Collaboration between centres to collect data on feasibility of the core set and data on pain and fatigue, which will be the base for further discussion on treatment and measurement.

A full report is published in Neuromuscular disorders (pdf)