Fatigue Management in Muscular Dystrophy

Written by Stephanie Schrader – Senior Occupational Therapist

Muscular Dystrophy Queensland

What is Fatigue?

Fatigue is one of the most common and persistent symptoms in people with muscular dystrophy and similar neuromuscular conditions. It can affect daily activities, independence, work, study and social participation. Fatigue may be physical, which is a heavy and tired feeling in the body, or cognitive, which includes brain fog, forgetfulness or difficulty concentrating.

Studies suggest that chronic fatigue affects around 60% of people living with neuromuscular conditions and is often rated as one of the most challenging symptoms to manage⁵. Unlike regular tiredness, fatigue in muscular dystrophy may be disproportionate to the level of activity, may not improve fully with rest, and can persist even when inactive. This can lead to a cycle of reduced activity, further loss of strength, and increased fatigue.

Causes and Contributing Factors

Multiple factors can trigger or worsen fatigue in muscular dystrophy, and these can vary between individuals:

1. Poor sleep quality and sleep disorders, such as insomnia or sleep-disordered breathing³. For example, some people may experience obstructive sleep apnoea or require overnight ventilation to support breathing. The Muscular Dystrophy UK fatigue management guide outlines strategies for managing these challenges.

2. Side effects from medications, such as steroids or muscle relaxants, which can cause drowsiness or reduced alertness.

3. Reduced physical activity over time, which can lead to deconditioning and reduced endurance.

4. Poor nutrition and hydration, which can affect energy levels.

5. Mental health concerns, such as depression or anxiety, can intensify feelings of fatigue.

Understanding which of these factors are contributing to fatigue is the first step to creating an effective management plan.

Energy Conservation and Fatigue Management

Energy conservation is an approach that helps people use their available energy more effectively and reduce the impact of fatigue. Occupational therapists can help by:

1. Setting realistic, meaningful goals

2. Recommending assistive technology and home modifications to reduce effort², such as installing grab rails, using a lightweight vacuum cleaner, or introducing an adjustable bed

3. Teaching pacing strategies, such as resting before fatigue becomes overwhelming

4. Modifying daily activities, for example sitting while cooking or cleaning

5. Encouraging task delegation to family, carers, or support workers

Research shows these strategies can improve quality of life, increase participation, and reduce the severity of fatigue¹.

For more ideas, see the Muscular Dystrophy UK fatigue management guide.

Practical Fatigue Management Strategies

• Rest proactively: Schedule regular breaks before you feel exhausted.⁶

• Maintain physical activity: Engage in gentle, regular exercise such as stretching or hydrotherapy, as advised by a physiotherapist.⁴ The Physiotherapy Evidence Database provides research-backed guidance.

• Modify activities: Use seating when possible, rearrange your home to minimise unnecessary movement, and keep essential items within easy reach.

• Use assistive devices: Consider aids such as shower chairs, mobility scooters, or electric jar openers to reduce strain.

• Alternate tasks: Balance physically demanding activities with lighter tasks throughout the day.

• Improve sleep hygiene: Maintain a regular sleep schedule, avoid heavy meals before bed, and keep your bedroom cool and dark. See the Sleep Health Foundation for more tips.

• Plan your week: Spread out activities and avoid clustering too many demanding tasks on one day.

• Support cognitive function: Use calendars, alarms and to-do lists to manage memory and concentration.

Physiotherapist and client in a hydrotherapy session

Activity Pacing: Pace, Plan, Prioritise

Pace: Break larger activities into smaller steps and rest before fatigue worsens. Example: instead of cleaning the whole house in one day, clean one room at a time and rest in between.

Example 1: Cleaning the home over a week.

Example 2: Gardening around the house throughout the day.

Plan: Identify important activities, schedule them at times of day when you have the most energy, and incorporate rest periods. Using assistive equipment such as kitchen perching stools can also help.

Prioritise: Focus on tasks that are meaningful to you and delegate or remove less important ones. Avoid pushing through pain or extreme fatigue.².

The Packer Managing Fatigue Program is one example of an evidence-based course delivered by occupational therapists to teach these skills.

Where to Get Support

Managing fatigue is easier with the right team and resources. In Queensland, support is available through:

• Muscular Dystrophy Queensland – Occupational Therapy Services – Individual and group fatigue management programs, including the Packer Managing Fatigue Program

• NDIS – Home and Living Information – Information about NDIS funded home and living supports to assist you where you need

• Muscular Dystrophy UK – Fatigue and Energy Conservation Guide – Practical strategies for energy management

If fatigue is affecting your daily life, work, or ability to do the things you enjoy, Muscular Dystrophy Queensland can help.

Our occupational therapists are trained in evidence-based fatigue management and can work with you one-on-one or in group programs to:

• Reduce the impact of fatigue

• Improve your quality of life

• Boost your confidence in managing symptoms

Contact us today to speak with our team and learn more about our services:
📞 1800 676 364 | ✉️ info@mdqld.org.au | 🌐 www.mdqld.org.au

References

¹ Alizadeh, N., et al. (2024). Client perceptions of the individual packer management fatigue program: A Mixed Method Evaluation. Occupational Therapy Journal of Research, 44(4), 632-641. https://doi.org/10.1177/1594492241262740
² Kim, S., Xu, Y., Dore, K., Gewurtz, R., Larivière, N., & Letts, L. (2022). Fatigue self-management led by occupational therapists and/or physiotherapists for chronic conditions: A systematic review and meta-analysis. Chronic Illness, 18(3), 441-457. https://doi.org/10.1177/17423953211039783
³ Muscular Dystrophy UK. (2024). Education Guidelines in full. https://www.musculardystrophyuk.org/app/uploads/2024/04/Education-Guidelines-in-full.pdf
⁴ Stefanetti, E., et al. (2020). Measuring the effects of exercise in neuromuscular disorders: a systematic review and meta-analyses. https://www.musculardystrophyuk.org/app/uploads/2024/04/Education-Guidelines-in-full.pdf
⁵ Torri, F., et al. (2023). Pathophysiology and Management of Fatigue in Neuromuscular Disease. International Journal of Molecular Science, 24(5). https://doi.org/10.3390/ijms24055005
⁶ Veenhuizen, Y., et al. (2015). Effectiveness and cost-effectiveness of a self-management group program to improve social participation in patients with neuromuscular disease and chronic fatigue: protocol of the Energetic study. BMC Neurology, 15, 58. https://doi.org/10.1186/s12883-015-0314-4