Stephanie Frade* has personal experience with autoimmune diseases and understands the benefits that exercise can have on patients with scleroderma. Here she shares her insights into the disease and how patient health may be improved with a careful exercise regime.

Background

Scleroderma, or systemic sclerosis (SSc), is a chronic, connective tissue disease that causes widespread micro-vascular damage, immune system activation and excessive collagen deposition in the skin and internal organs.1

It is an autoimmune disease with an unknown cause and no cure, similar to systemic lupus, Sjögren’s and rheumatoid arthritis.

Systemic scleroderma can occur in two forms: limited or diffuse cutaneous.

Limited scleroderma affects the skin, oesophagus and distal joints, while the much more severe diffuse scleroderma is progressive and impacts the majority of the internal organs, with symptoms including skin thickening, Raynaud’s phenomenon, cutaneous ulcerations, joint pain, contractures, gastrointestinal complications, oesophageal dysmobility, a compromised respiratory system, kidney disease and a decrease in cardiac function. As such, it is often referred to as a multisystem disease that can be life threatening.

Due to the disease’s unpredictability and seriousness, scleroderma patients are often uncertain if they can exercise.

Exercising safely with scleroderma

It is well known that physical inactivity combined with chronic use of drugs can lead to deconditioning and muscle weakness in the general population, and specifically for those with rheumatic disease.1

In the past, exercise has not been recommended for scleroderma patients in the belief that it could aggravate the inflammatory process. While there has been limited research to date on scleroderma and exercise, enough has been published to support exercise as an essential tool for scleroderma management1.

Most studies have proven that aerobic exercise, or aerobic exercise combined with resistance exercise, improves exercise tolerance, aerobic capacity, walking distance, muscle strength and function as well as health-related quality of life.2 Moderate intensity aerobic exercise, with duration of up to 40 minutes, is safe and effective in improving quality of life and exercise capacity.3

Patients both with and without pulmonary involvement may experience improved muscle strength, physical and aerobic capacity, and health-related quality of life [LB1] following exercise.2 Scleroderma patients would benefit from health professionals informing them about the importance of adhering to a long-term exercise program3 and avoiding a sedentary lifestyle.2

Guidance for allied health professionals:

Before commencing any structured exercise program, the patient needs clearance from their regular GP and/or specialist.

Ideally the patient should be referred to an accredited exercise physiologist (the exercise specialist) to help manage their exercise program.

The exercise program must be tailored to the individual, and dependent on their disease type, severity and secondary complications.

Despite evidence-based exercise testing and objective results, never underestimate the power of subjective information. Valid and reliable subjective scales are great tools for monitoring progress (RPE scale — rate of perceived exertion, fatigue severity scale and/or SF36). The person living with the disease tends to know their body best, and so, reporting their symptoms objectively throughout the exercise program is a reliable and effective strategy.

Encourage physical activity! A combination of resistance and aerobic training is safe and beneficial in improving aerobic fitness and functional strength, thus improving the patient’s ability to perform activities of daily living such as walking further distance with less effort, walking up/down stairs freely, swimming in the ocean, picking up groceries, playing with children/grandchildren.

Exercise considerations and application

Symptom considerations Joint pain

Joint deformities

Fatigue

Headaches

Sensitivity to light

Suppressed immune function

Mood changes

Weight changes

Breathing difficulties Exercise considerations Keep it individualised.

Keep a record of their reported symptoms: onset, severity and duration.

Use reliable scales such as RPE, FSS and SF36 to track their progress.

Be mindful of ground reaction forces and end range of motion exercises (joint pain and deformities).

Be mindful when handling weights (joint pain and deformities).

Allow adequate rest between sets of exercise.

Periodise (pace out) weekly training sessions to allow for adequate recovery time.

Be mindful of hygiene and cleanliness of facility (suppressed immune function).

Keep in mind the amount of energy the person has the day of exercise and modify accordingly. Exercise contraindications Doctor disapproval.

Severe joint pain and/or any other symptoms that don’t resolve with rest or medication.

During ‘Flare’ period.

Development of unexplained or new symptoms.

High score on fatigue severity scale.

Extreme and debilitating fatigue.

High blood pressure pre-exercise or any fluid retention.

References

Pinto, A.L.S., Oliveira, N.C., Gualano, B., Christmann, R.B., Painelli, V.S & Artioli, G. (2011) Efficacy and safety of concurrent training in systemic sclerosis. Journal of Strength and Conditioning Research, 25, 5 De Oliveira, N.C., Portes, L.A., Pettersson, H., Alexanderson, H & Bostrom, C. (2017). Aerobic and resistance exercise in systemic sclerosis: State of the art. Journal of musculoskeletal care, 15, 316-323. De Oliveira, N.C., Portes, L.A., Pettersson, H., Alexanderson, H & Bostrom, C. (2017). Aerobic and resistance exercise in systemic sclerosis: State of the art. Journal of musculoskeletal care, 15, 316-323.

*Stephanie Frade is an Accredited Exercise Physiologist (ESSA), Clinical Pilates instructor, Sessional Lecturer and Practicum Project Officer with the School of Behavioural and Health Science at the Australian Catholic University. Her passion for autoimmune disease was sparked at a young age when her mother was diagnosed with scleroderma, and Stephanie was diagnosed with systemic lupus, triggering a desire to use her expertise in exercise physiology and her own personal triumph with lupus to educate and inspire others to live a healthier, happier life. Visit: www.stephaniefrade.com.