Daily Management and Quality of Life

Day-to-day life with systemic sclerosis (SSc) requires practical strategies to manage symptoms and maintain your quality of life. The impact of the disease on fatigue, mobility, and social functioning can be significant, but proactive management can help you retain your independence and comfort ^[1].

Managing Raynaud’s Phenomenon

Protecting your hands and feet from cold and stress is vital to prevent painful attacks and the development of digital ulcers (open sores) ^[2].

• Keep Your Core Warm: It is not just about wearing gloves. Keeping your whole body (core) warm prevents your nervous system from cutting off blood flow to your extremities.
• Practical Tools: Use rechargeable hand warmers, wear silver-threaded gloves, and always keep a warm jacket nearby.
• Avoid Triggers: Avoid sudden temperature changes, such as reaching into the freezer or walking into a heavily air-conditioned room, without protection.

Managing Skin Tightness and Joint Stiffness

As the skin thickens, it can restrict your movement and cause significant discomfort.

• Daily Stretching: Gentle, daily stretching exercises are essential to maintain your range of motion and prevent “contractures,” a condition where joints become frozen in a bent position ^[3]. An occupational therapist can teach you specific hand and mouth stretches to do every morning.
• Skin Care: Keep the skin heavily moisturized. Use thick creams or ointments (rather than thin, water-based lotions) immediately after showering to trap moisture in the skin. Avoid taking very hot showers, as they can dry out the skin further.

Managing Gastrointestinal (GI) Dysfunction

GI symptoms like severe heartburn and early satiety (feeling full quickly) heavily impact your daily life and can lead to unintended weight loss ^[4].

• Dietary Adjustments: Eat smaller, more frequent meals rather than three large ones. Chew your food thoroughly to aid digestion, and avoid foods that trigger your reflux (commonly spicy, fatty, or acidic foods).
• Reflux Prevention: Do not eat within 3 to 4 hours of going to bed. Elevate the head of your bed by 6 to 8 inches (using solid bed risers, not just piling up pillows) to use gravity to keep acid down in your stomach at night ^[5].

Managing Fatigue

Fatigue in SSc is deeply rooted in the disease process and can be one of the most frustrating invisible symptoms ^[6].

• Pacing: Learn to pace yourself. Break large tasks into smaller, manageable chunks, and do not be afraid to rest before you are completely exhausted.
• Prioritize Sleep: Practice excellent “sleep hygiene” by keeping a consistent sleep schedule and ensuring your sleep environment is comfortable and dark. If your GI symptoms are keeping you awake, discuss adjusting your reflux medications with your doctor.