Fatigue Management

Fatigue is a feeling of constant, overwhelming exhaustion, and weakness. It is important to note that it is a symptom of underlying conditions, not a condition in itself, making it quite common for people with neuromuscular diseases. Fatigue may be triggered from doing the simplest things, such as unpacking groceries or even writing something by hand – though the intensity varies from person to person.

Due to its unpredictability and uniqueness, it may sometimes be difficult to explain to others and people suffering with fatigue often withdraw socially. Other accompanying traits of fatigue include

  • poor appetite,
  • low mood
  • ‘brain fog’ or the inability to remember things clearly
  • feeling like energy always needs to be ‘budgeted’
  • lack of motivation,
  • difficulty initiating and/or completing everyday tasks which individuals would usually not struggle with.

Fatigue & neuromuscular conditions

Fatigue can happen to anyone. However, it is especially common among people living with muscle-wasting conditions, around 70% of whom report fatigue, with many people describing it as their most troubling symptom. Fatigue can be experienced at any stage and research has shown that fatigue is not necessarily related to the physical severity of your condition.

There are two different kinds of fatigue – primary fatigue manifests in the muscles and body as a result of neuromuscular disease, meanwhile secondary fatigue is not necessarily directly caused by neuromuscular disease, but by factors which may be a consequence of living with a neuromuscular condition.

Muscular endurance and physical stamina are limited in people with neuromuscular conditions. Your muscles may become tired more quickly than usual causing them to shake, cramp or ache. This is primary muscular fatigue. However, there are many things besides muscle weakness that contribute to feeling tired. Examples of factors that may cause secondary fatigue include, but are not limited to, the ones listed in the image below:

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Secondary Factors of Fatigue

Advice for people suffering with fatigue

There is no cure for fatigue, only symptom management. However, some things have been shown to sometimes alleviate people’s fatigue. Pacing yourself by taking regular rests is one of the most useful fatigue management principles. It is important to avoid a Boom-Bust cycle of activity. It is important to get into a routine to work with your body clock to naturally feel more energised. Learning to stop and listen to your body is essential. The graphs below help to demonstrate this. 

 

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Fatigue graph demonstrating the rest cycle
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Graph illustrating appropriate pacing

Eating little and often has been shown to help some people. It is important to cut out processed foods, caffeine and alcohol, and eat a lot of fresh, seasonal fruit and vegetables. Food supplements may also help the body receive all necessary vitamins and minerals. Vitamin D is recommended for everyone, the NHS guidelines are 10micrograms per day. Vitamin D can be bought at many supermarkets. Exercising is also key – with fatigue a little goes a long way so it is important to go outside even for short periods of time. Many people report that yoga or Pilates helps them exercise gently.

The first step in getting help with fatigue is to contact your GP. However, we appreciate living with fatigue can be frustrating, which is why we have published a new resource which hopefully will help people with a muscle-wasting condition with their fatigue. References and worksheets are also available for download.

If you need any further advice or information, here are some additional helpful links to resources which may also help with understanding and/or management.

Royal College of Occupational Therapists – a useful guide initially developed for people following covid-19 infection - https://www.rcot.co.uk/conserving-energy

NHS inform - https://www.nhsinform.scot/care-support-and-rights/palliative-care/symptom-control/coping-with-fatigue#coping-with-fatigue-at-work

Brain&Spine Foundation - https://www.brainandspine.org.uk/information-and-support/living-with-a-neurological-problem/fatigue/

Muscular Dystrophy News - https://musculardystrophynews.com/fatigue

SimplyEmma (disabled blogger’s personal experience) - https://www.simplyemma.co.uk/ways-to-manage-muscle-fatigue-with-muscular-dystrophy/