Systemic Sclerosis (SSc)

Systemic sclerosis (SSc) is a rare, chronic condition characterized by widespread scarring (fibrosis) of the skin and multiple organs, including the lungs, kidneys, gastrointestinal tract, heart, muscles, and joints. SSc is an autoimmune condition, in which the immune system functions abnormally and attacks normal, healthy tissues. Autoimmune activity causes the symptoms of SSc, although exactly how this happens is not known.¹

Skin Care for SSc Management

SSc changes the skin, causing it to become delicate, dry, and susceptible to infection, especially if calcium deposits form underneath the skin or ulcers develop on the digits as a consequence of poor circulation. Keeping the skin covered and warm promotes circulation of the blood and prevents complications.² 

The skin should be washed gently (without abrasive scrubbing) and moisturizers applied frequently, especially after the skin has been wet. The use of fragrance-free, natural skin care products decreases the likelihood of allergic reactions.² 

Extra care must be taken during cooking or gardening with sharp tools. It is important to prevent cuts, scrapes, bumps, and abrasions to minimize the risk of infections or injuries that may be slow to heal.² 

Skin problems related to SSc can be managed by a dermatologist. Routine visits are recommended.²

Read more about SSc care team

Lifestyle Modifications for SSc Management

Avoidance of cold is especially important because cold exacerbates vasoconstriction. Moving to a warmer climate does not always relieve the condition; instead, patients with SSc should dress in layers to stay warm and should wear boots, socks, and gloves to decrease the burden of Raynaud phenomenon.³

People with SSc should quit smoking; the use of tobacco products may compromise the lungs and worsen skin problems by adversely affecting the circulation of blood and exacerbating Raynaud phenomenon.^2,4 Raynaud phenomenon occurs when blood vessels constrict during spasm and the flow of blood to specific areas of the body, especially the fingers and toes, is decreased.⁵

Read more about SSc clinical features

Dietary Changes for SSc Management

SSc may cause changes in the digestive tract and difficulty swallowing if the esophagus is affected. It can cause heartburn, bloating, constipation, and weight loss due to malabsorption. Consuming small meals frequently throughout the day and cutting food into small, bite-sized pieces may facilitate the ingestion of food.^3,6

Changes to the digestive system may also cause gastrointestinal reflux disease (GERD). Patients with SSc and GERD may require medications, such as antacids and proton pump inhibitors, to reduce the symptoms of reflux. Raising the head of the bed may prevent the inhalation of reflux during sleep. Not lying down for 3 hours after finishing a meal may also be beneficial.⁶ 

Nutrient deficiencies, digestive complaints, and fatigue are common in people with SSc, so a balanced, nutritious diet is critical to improving health and quality of life. No specific diet is recommended for individuals with SSc; however, the consumption of proteins, vitamins, minerals, anti-inflammatory foods, and energy-promoting foods is emphasized.⁷

Malnutrition can become a serious problem in people with SSc. Symptoms of malnutrition include⁷:

• Unexplained loss of 10% or more of body weight during 3 months;
• Excessive fatigue;
• Muscle weakness and wasting (atrophy);
• Slow wound healing;
• Brittle nails; 
• Excessive hair loss;
• Extremely dry, flaky skin; and
• Recurrent infections (due to a weakened immune system).

Several recommendations may help in cases of malnutrition⁷:

• If skin tightness around the jaw and mouth interferes with chewing, juicing vegetables or pureeing and blending food may facilitate the consumption of essential nutrients. 
• Fruit smoothies made with yogurt or milk and protein powder may also provide nutritional support and are easy to consume. 
• High-protein liquid nutritional products, such as Ensure Plus, may be a source of energy between meals at least 1 to 3 times per day. If not tolerated, then a high-protein, juice-based alternative can be considered as well. 
• The consumption of soft, moist foods may facilitate swallowing and movement through the esophagus. 
• Supplementation with a multivitamin may be recommended in specific cases when nutrient deficiencies have been identified.
• Probiotics may reduce abdominal pain, bloating, and distension.

Consultation with a registered dietitian or nutritionist may be helpful to ensure proper, balanced nutrition.⁷

Read more about SSc diet and nutrition

Exercise Recommendations for SSc Management

Exercise is important for the overall health of everyone, including people with SSc. Regular movement can be useful to decrease disease-related symptoms, such as joint and muscle stiffness, pain, and fatigue, and to alleviate stress.⁸

Exercise tolerance will vary from person to person, depending on the individual patient’s symptoms. Because of limited joint mobility and pain, low-impact exercise is encouraged for persons with SSc, including walking, cycling, swimming, yoga, water aerobics, Pilates, and some forms of dancing.⁸ 

It is important to consult with a physical therapist after clearance from your physician to develop a safe exercise program that will not cause injury or worsen symptoms. During exercise, it is essential to listen to your body. If something hurts, you may need to stop a particular movement or consult with a health care provider such as a physical therapist to modify the exercise and find alternative movements that do not cause pain.⁸

Read more about SSc treatment

References

1. Nevares AM. Systemic sclerosis. Merck Manual Professional Version. Updated October 2022. Accessed April 26, 2023.
2. Skin care tips for systemic sclerosis. Rheumatology Solutions. Accessed April 26, 2023.
3. Scleroderma. American College of Rheumatology. Updated December 2021. Accessed April 26, 2023.
4. Leask A. When there’s smoke there’s…scleroderma: evidence that patients with scleroderma should stop smoking. J Cell Commun Signal. 2011;5(1):67-68. doi:10.1007/s12079-010-0111-1
5. Raynaud’s phenomenon. National Institute of Arthritis and Musculoskeletal and Skin Diseases. Published April 10, 2017. Accessed April 26, 2023. 
6. Nevares AM. Systemic sclerosis. Updated October 2022. Accessed April 26, 2023.
7. Malnutrition for scleroderma. University of Michigan Health. Accessed April 26, 2023.
8. Scleroderma and exercise uncovered. Exercise Right. Accessed April 26, 2023.

Reviewed by Debjyoti Talukdar, MD, on 4/26/2023.

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Maria Arini Lopez, PT, DPT, CSCS, CMTPT, CIMT

Maria Arini Lopez, PT, DPT, CSCS, CMTPT, CIMT is a freelance medical writer and Doctor of Physical Therapy from Maryland. She has expertise in the therapeutic areas of orthopedics, neurology, chronic pain, gastrointestinal dysfunctions, and rare diseases especially Ehlers Danlos Syndrome.