Introduction

Facioscapulohumeral muscular dystrophy (FSHD) is one of the most common muscular dystrophies, affecting approximately 1 in 20,000 people.⁷ It is a genetic condition that gradually weakens muscles, particularly those of the face, shoulders, and upper arms. Living with FSHD means experiencing fatigue, weakness, and physical limitations that change over time.

A common concern for those with FSHD is whether exercise is safe. This is a valid question; although exercise is known to support overall health, some people fear it may worsen muscle weakness or cause harm. Encouragingly, recent research shows that when carefully planned and supervised, exercise can be both safe and beneficial.^1,6

This article explains how FSHD affects movement, why exercise matters, which types of exercise are recommended, and what safety precautions to take, drawing from clinical trials and expert guidelines.

How FSHD Affects Movement

FSHD results from genetic changes that activate the DUX4 gene, which leads to damage to muscle cells.⁷ The condition typically begins with weakness in the face, which may present as difficulty smiling, whistling, or closing the eyes. Over time, this weakness progresses to the shoulders and arms, causing difficulty in lifting the arms. In some cases, FSHD can also affect the legs and back, impacting posture and balance.

People with FSHD also commonly report fatigue and persistent tiredness.³ The condition is highly variable: some people experience only mild weakness and live full, active lives, whilst others may require mobility aids.

Importance of Staying Active

Exercise is essential for physical health and well-being, and people with FSHD are no exception. Aerobic activity strengthens the heart and lungs,^1,4 helps to maintain function for daily activities, and reduces fatigue. Combined with stretching, it can also alleviate stiffness and improve flexibility.⁷ Overall, exercise is known to improve mood, sleep, and quality of life.^3,5 Even with FSHD, exercise is highly beneficial for:

• Cardiovascular health
• Mobility and independence
• Flexibility
• Fatigue management
• Emotional well-being

Exercising Safely with FSHD

Safety is the foundation of any exercise programme for FSHD. Unlike in healthy individuals, where pushing through discomfort may lead to fitness gains, overexertion in FSHD can cause harm.⁷ Key safety considerations include:

• Medical clearance: Always consult a doctor before starting an exercise programme⁷
• Professional guidance: A physiotherapist familiar with neuromuscular conditions can tailor programmes to individual needs⁷
• Start slow: Begin with light activity and increase intensity gradually^2,7
• Listen to your body: Stop if you experience pain, prolonged weakness, or unusual fatigue⁷
• Rest and recovery: Schedule rest days and avoid sustained overexertion⁵

Encouragingly, clinical trials show that supervised exercise is safe in FSHD. For example, Olsen et al.⁴ found that aerobic cycling, with or without protein supplementation, improved fitness and well-being without raising blood markers of muscle damage.

Types of Exercise: What Works Best

Different forms of exercise offer unique benefits. The most appropriate choice depends on individual ability, preferences, and goals.

Aerobic Exercise

Walking, cycling, and swimming improve stamina, cardiovascular fitness, and reduce fatigue.^1,3,4 High-intensity aerobic activity can cause exhaustion or prolonged weakness and should be approached with caution.⁵

Strength Training

Resistance bands, light weights, and bodyweight exercises help to maintain strength for daily tasks and slow muscle loss.² Heavy lifting should be avoided, as it can overstrain already weakened muscles.^2,7

Flexibility and Stretching

Gentle stretching, yoga, and mobility drills reduce stiffness, prevent contractures, and maintain range of motion.⁷

Low-Impact Activities

Water aerobics, swimming, and recumbent cycling minimise strain on weak muscles and joints, making them particularly safe options.⁵

High-Intensity Interval Training (HIIT)

Supervised short bursts of cycling or other aerobic activity can improve fitness in motivated individuals.⁶ However, HIIT is only safe with close professional monitoring and is not suitable for everyone.⁶

Risks to Watch Out For

While exercise offers many benefits, risks arise when programmes are poorly designed or unsupervised:

• Overtraining: Excessive exercise can lead to lasting weakness, not just temporary soreness⁷
• Injury: Weakness in the trunk or leg muscles increases the risk of falls⁷
• Frustration: If exercise feels overwhelming or discouraging, motivation may decline³

These risks highlight the importance of careful pacing and professional guidance.

Tips for Safe Exercise

• Start small: Begin with 10 to 15 minutes of gentle walking or cycling
• Progress gradually: Increase duration before intensity
• Prioritise consistency: Regular, moderate activity is more effective than occasional intense sessions
• Include recovery: Rest days are essential for muscle repair
• Use adaptive methods: Consider aquatic therapy or recumbent bikes
• Warm up and cool down: This protects muscles and joints
• Monitor your body: Track fatigue and strength changes in a diary

Getting the Right Support

Managing exercise with FSHD often works best with professional support:

• Physiotherapists: Design safe, individualised exercise programmes⁷
• Occupational therapists: Suggest adaptations to support daily activities⁷
• Neuromuscular specialists: Monitor disease progression and advise on safe exercise limits⁷

Summary

Exercise is not only safe for people with FSHD when done properly, it is highly beneficial. Aerobic exercise, light resistance training, stretching, and low-impact activities can all help to preserve mobility, reduce fatigue, and improve well-being.^1,6 The risks are primarily associated with overexertion, progressing too quickly, or exercising without guidance.⁷

The key is balance: start slowly, listen to your body, rest when needed, and seek professional support. By following these principles, exercise can become a powerful tool for maintaining independence and enhancing quality of life in FSHD.