15 Nov Scleroderma and exercise uncovered
Regular exercise is especially important for people with scleroderma because it helps manage common symptoms such as fatigue, joint pain and stiffness, and stress.
Accredited Exercise Physiologist, Stephanie Frade, lifts the lid on this relatively unknown autoimmune disease and shows you how to exercise right for scleroderma.
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, Sjrogens, 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, esophagus, 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, esophageal 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 dependent.
Regular exercise is especially important for people with scelroderma 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 sclerodema is different, and so exercise intervention will be very person dependant.
Exercise is good for people with sclerdoerma, 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.
How to Exercise Right for Scleroderma
1. Consult a team of professionals
Exercise programs should be planned in consultation with your doctor or specialist, ensuring ongoing communication is maintained.
2. Each person is unique
It is important to keep in mind the pathophysiology and disease process when treating functional mobility, as each person will require different management.
3. Listen to your body
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 you and your needs. Making sure you get fit today is a great mantra but you need to make sure it fits with your condition so you don’t do yourself some serious damage.
4. Symptom management comes first
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.
5. Don’t over-do it
It should be encouraged that activities are carried out in moderation and rest is taken when needed. This is because you may find that your tolerance for activity and movement is below normal.
6. Be gentle
Individual exercises should be performed gently and with due care, ensuring you are listening to your body.
7. Start slow and build gradually
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 you may feel different so you may need to have adjustments made accordingly.
8. Opt for more gentle aerobic exercise
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 you to get involved with on a regular basis.
9. Plan your program
Exercise should be planned appropriately with adequate rest intervals and periodisation. You should be encouraged to exercise on a day/time when you know you can get an adequate rest afterwards. Physical stress and exhaustion can trigger flares so it is important to ensure that your body is getting a good recovery. Fatigue can be a problem for people with scleroderma, so it’s important that you pace yourself during exercise. It’s okay for you to take breaks and rest accordingly, but your accredited exercise professional should encourage you NOT to give up altogether.
The role of the accredited 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 a health care team, your accredited exercise physiologist will be able to safely provide an individualised exercise program that will assist you in both your recovery & management of the disease, help prevent relapses and progression of the disease from occurring and maximise your quality of life.