The July 2023 Virtual Education Session (VES) focused on the impact of exercise and physical activity for people living with Systemic Sclerosis (SSc) or Scleroderma. 

Our key presenter, Dr Stephanie Frade, a respected exercise physiologist from Immune Exercise Physiology, and research manager from the Rheumatology Department at Liverpool Hospital, emphasised the transformational beneficial effects of exercise and physical activity for people with scleroderma. She also shared a recent study she led-authored, “Views of Exercise in People With Systemic Sclerosis: A Qualitative Study.” 

Obstacles like fatigue and Raynaud’s phenomenon often discourage people living with scleroderma from maintaining consistent exercise schedules. Here’s a recap of the July 2023 Virtual Education Session:

Barriers to exercise in scleroderma

Despite the known health benefits of exercise, approximately half of individuals with scleroderma, (an autoimmune disease), are physically inactive. 

Various barriers prevent individuals from engaging in regular exercise, including discomfort, pain, fatigue, Raynaud’s phenomenon (extreme sensitivity to cold), joint stiffness, shortness of breath, gastrointestinal issues, and difficulty in grasping objects. 

Psychological and social factors such as embarrassment about physical abilities or appearance, fear of injury, and concerns about long recovery times post-exercise also play a significant role.

Studies show that individuals with scleroderma fear that exercise might worsen their symptoms or trigger disease flares. There are also non-disease-related barriers such as lack of motivation and time constraints due to life responsibilities like work and family.

Addressing these barriers requires a tailored approach. Imparting appropriate knowledge and creating supportive environments can help facilitate exercise and contribute to improved health outcomes in individuals with scleroderma.

Strategies and recommendations for exercise

Exercise physiologists, who specialise in prescribing and delivering exercise for people living with chronic conditions, disabilities, or injuries, can be of great help in overcoming the barriers to exercise and physical activity. 

Their services are often claimable under schemes such as the NDIS, Medicare, aged care, and private health insurance. Physiotherapists can also provide exercise prescriptions and are especially focused on acute care and manual therapy. Availability to either profession often depends on individual access.

However, exercise physiologists are not specifically trained to provide exercises for the mouth and hands. Hand therapists, occupational therapists, and dentists are more suited to these areas, especially, to enhance oral aperture and hand function. It is advisable to consult these professionals for obtaining targeted exercises for the mouth and hands.

Dr Frade also offered strategies based on the findings of her research. She suggested enhancing self-confidence through knowledge, using assistive equipment like exercise gloves and special hand-grips, wearing special shoes, and using supplementary oxygen during workouts, which should help. 

Her study found a preference for modified, supervised exercises among individuals with scleroderma, indicating the potential effectiveness of group or buddy exercises. Group exercise or exercising with a friend can improve motivation and adherence.

Citing their research, she also suggested exercise sessions of 30-50 minutes twice a week, over a span of 12 weeks. Recommended activities include walking, cycling, and strength exercises, to name a few. Moreover, she highlighted the importance of substituting sedentary behaviour with active behaviour throughout the day and recommended the supervision of these routines.

Sedentary behaviour refers to activities that involve sitting or reclining with minimal physical movement and low energy expenditure. Examples include sitting at a desk, watching TV, or using a computer for extended periods without engaging in physical activity.

Prolonged periods of sedentary behaviour are linked to health risks such as obesity, cardiovascular disease, and certain chronic conditions.

Understanding the right dosage of exercise is paramount as well, as Frade explained. She proposed a goal of 75 to 150 minutes of physical activity per week, with professional assistance to customise plans according to individual needs and capacities.

Exercise has numerous positive effects, such as improving aerobic capacity, overall well-being, and quality of life. It boosts the release of endorphins, leading to an improved mood, especially for individuals coping with a debilitating condition like scleroderma. 

Exercise also enhances muscle strength, endurance, and function, enabling individuals to engage in daily activities more comfortably. Furthermore, exercise reduces fatigue, which is beneficial for those with scleroderma.

Conducive exercise environment

Before starting an exercise program, consult with an exercise physiologist and a medical doctor. Select enjoyable activities, set realistic goals, and gradually increase intensity and duration. Listening to your body and adjusting activity levels are keys to establishing a safe and sustainable routine.

The “spoon theory” explains that individuals with chronic diseases have limited energy levels, represented by “spoons.” Finding the right balance of energy means understanding the available spoons and using them wisely to avoid overexertion and fatigue.  So, choose exercise sessions that align with your available energy, avoiding overexertion.

Some practical suggestions you can use include using straps instead of hand gripping, utilising comfortable surfaces with additional blankets and towels as needed, and ensuring proper sanitisation of exercise equipment, particularly for individuals taking immunosuppressant medication.

You can also use specialised and adaptive equipment, such as weighted straps and therapeutic bands, for improving resistance and muscle engagement during exercise. Exercise options like stationary bikes and arm bikes that cater to specific needs or limitations are also preferable.

Supervision and gradual progression, especially for strength exercises, were encouraged for safety and effectiveness. Monitor oxygen levels and heart rate for individuals with lung or heart involvement. 

On the issue of affordability and accessibility of exercise programs, there are options like NDIS, Medicare subsidies, and My Aged Care. Some hospital-based services might be available free of charge as well. 

In conclusion, the Virtual Education Session (VES) underlined the indispensable role of exercise and physical activity for those living with scleroderma. By engaging in regular exercise, overcoming barriers, and following the evidence-based recommendations presented, people living with scleroderma can significantly enhance their overall health and quality of life.