Scleroderma & exercise uncovered

Scleroderma & exercise uncovered

What is Scleroderma?

Scleroderma, or systemic sclerosis (SSc), is a chronic connective tissue disease. It is classified as one of the autoimmune rheumatic diseases, similar to Lupus, Sjögren’s, multiple sclerosis etc.

The hallmark signs of systemic sclerosis include three physiological characteristics: small vessel vasculopathy, production of autoantibodies, and a hyperactive fibroblast dysfunction. This fibroblast dysfunction leads to unregulated type 1 collagen deposition within the extracellular space, the intima of blood vessels and the interstitium of skin. As a result, fibrosis and a decline in function throughout the body occur. This disease is commonly known for thickening or hardening of the skin.

Systemic scleroderma can present as either limited or diffuse cutaneous. Limited scleroderma affects the skin, oesophagus, and distal joints, while the much more severe diffuse scleroderma is progressive and compromises the majority of the internal organs. Patient presentation and disease characteristics of diffuse scleroderma includes 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 multi system disease that can be life threatening.

Due to the variable presentation of the disease, exercise intervention will be very person dependant.

Regular exercise is especially important for people with scleroderma because it helps manage common symptoms such as fatigue, joint pain and stiffness, and stress. Since many people with scleroderma experience joint and muscles stiffness, low-impact activities like walking, cycling, swimming, yoga, dancing, water aerobics and Pilates are all good choices for activities. However, everyone with scleroderma is different, and so exercise intervention will be very person dependent. Exercise is good for people with scleroderma, but unsupervised exercise or too much exercise, too fast, can harm their health. It is important that the whole health care team work collaboratively with the individual to provide a safe individualised exercise program that will help manage the disease and maximise their quality of life.

Here are some general tips for the health professional:

  • Exercise programs should be planned in consultation with the patient’s doctor or specialist, ensuring ongoing communication is maintained.

  • It is important to keep in mind the pathophysiology and disease process of your scleroderma patient when treating their functional mobility, as each person will require different management.

  • Listen to your patient. The most important thing to understand about Scleroderma is that it often comes with good days and bad days, and therefore your exercise plan may need to be adjusted regularly to suit the patient and their needs.

  • The primary goal of exercise should be symptom management, in order to improve function (maintaining joint ROM, limiting connective tissue pain and stiffness, and promoting cardio-respiratory fitness), longevity, and quality of life.

  • It should be encouraged that activities are carried out in moderation and rest is taken when needed. This is because your patient may find that their tolerance for activity and movement is below normal.

  • Individual exercises should be performed gently and with due care, ensuring that the patient is listening to their body.

  • The exercise program should be built up gradually. Starting with too much or increasing too quickly can bring on symptoms. Use the 10% rule to gauge how much to increase, that is, increase the duration and intensity of your workout by 10% per week. However, remember that each day they may feel different so you may need to have adjustments made accordingly.

  • A gentle aerobic exercise program, such as walking, Pilates, yoga, tai chi or water-based exercise, can help to manage symptoms such as stiffness, pain and sleep disturbance. These are good types of exercise for your patient to get involved with on a regular basis.

  • Exercise should be planned appropriately with adequate rest intervals and periodisation. The patient should be encouraged to exercise on a day/time when they know they can get an adequate rest afterwards. Physical stress and exhaustion can trigger flares so it is important to ensure that their body is getting a good recovery. Fatigue can be a problem for people with scleroderma, so it’s important that they pace themself during exercise. It’s okay for them to take breaks and rest accordingly, but encourage them to NOT give up altogether.

The role of the Exercise physiologist should be to educate, empower and advise people with Scleroderma on how to take control of their health through exercise. In collaboration with the patient’s health care team, the Exercise physiologist will be able to safely provide an individualised exercise program that will assist the individual in both their recovery & management of the disease, help prevent relapses and progression of the disease from occurring and maximise their quality of life.

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