A major issue for FSHD

FSHD is a condition that affects the function of skeletal muscles. However, this description does not include the myriad of other symptoms that people with FSHD are forced to deal with as the condition progresses.

Fatigue is one of these symptoms. Fatigue is defined as a feeling of constant tiredness, weariness or lack of energy that doesn’t go away when you rest. This is distinct from the feelings of tiredness that everyone experiences in the course of their daily lives and fatigue can be severely debilitating.

A new paper has explored the experiences of people with FSHD who are suffering with severe fatigue. People in the study described their experience of fatigue as ‘overwhelming and unpredictable’. They also described being afraid of when fatigue might strike and found it difficult to predict when they may be seriously affected.

As with many aspects of FSHD the cause of fatigue is not well understood. Tiredness may come from muscle weakness, overuse of weakened muscles, stress, psychological stress or other factors such as work environment or financial pressure.

In recognition of the huge effect that fatigue has on the lives of people with FSHD the authors of the study suggest that this should be factored into any management strategies. Therapies such as aerobic exercise training and cognitive behavioural therapy have been shown to reduce the effects of fatigue and some people may find these therapies helpful.
Speak with your health professional about getting access to exercise physiology, psychology or physiotherapy services.