Exploring the experience of fatigue in people with Charcot-Marie-Tooth disease

This qualitative study explored the phenomenon of fatigue for people with Charcot-Marie-Tooth disease, while acknowledging the triggers, impact and strategies people have developed to manage this symptom in daily life. A phenomenological approach was used to explore the experience of fatigue. Participants were recruited from a support group. Twenty-five people participated in three focus groups. Group interviews were tape recorded and independently transcribed. Transcripts were coded and emerging themes were highlighted. Four areas were explored and themes identified within them. Fatigue descriptions: energy depletion, overwhelming nature, variations in fatigue and fatigue as an abnormal experience; triggers of fatigue: activity, stress and mental concentration; impact of fatigue on: physical abilities, mood, guilt and frustration, isolation and concerns about how they were perceived by others; strategies to manage fatigue: coping with symptoms; planning ahead; deception; and reducing symptoms. This study revealed that fatigue is an overwhelming experience for people with Charcot-Marie-Tooth disease that impacts on many areas of their lives. People may require significant adjustment that could be facilitated by fatigue management approaches. In addition, exercise may have potential to reduce the symptoms of fatigue in some people.