Beyond seeking knowledgeable, experienced medical care, there are many things you can do to manage the symptoms of scleroderma and keep your quality of life as high as possible. Incorporating effective management techniques into your daily life can help you continue to do the things you enjoy.

Reduce your exposure to cold as much as possible. Exposure to cold temperatures—even reaching into the freezer or sitting in an air conditioned room—can bring on a Raynaud’s attack. Dress warmly, in layers, wear socks and shoes, and keep a sweater and gloves or mittens handy. Stay inside when the weather is cold. Moving to a warmer climate and vacationing in warm weather areas can help lessen the severity of Raynaud’s.

Stress can also lead to Raynaud’s attacks. Learning and practicing relaxation techniques, including biofeedback, can help reduce Raynaud’s attacks and, in fact, help you cope with the many challenges of living with a chronic disease. 

Finally, if you smoke, quit. Smoking further constricts the blood vessels, which can make Raynaud’s worse. This is in addition to the many other harmful effects smoking can have on your health.

Skin sores, commonly referred to as ulcers, most often occur on the fingers or toes, and are called digital ulcers. Ulcers can also occur on other areas, including joint surfaces like the elbow. Painful and difficult to heal, ulcers are considered to have a major negative impact on quality of life for scleroderma patients.

Persistent Raynaud’s attacks contribute to the development of ulcers, which can be brought on by cuts, abrasions or other trauma to the skin. Controlling Raynaud’s attacks, through medication and the management techniques described above, is a primary line of defense. Protecting your skin is another. Exercise caution and protect hands, feet and other areas by wearing gloves when working, gardening and cleaning.  Wear protective clothing whenever you are active. Avoid coming into contact with abrasive/caustic substances.

If you develop an ulcer, keep the ulcerated area clean and protected. See your doctor as soon as possible if you suspect infection, which is common with ulcers. If left untreated, infection can increase the pain and spread to deeper tissues, leading in severe cases to actual loss of a fingertip toe, or other affected area.

Keeping joints limber and flexible can help you maintain as much of your normal activity as possible. A well-designed program of regular stretching and gentle exercise, under the direction of a physical therapist, can be helpful in maintaining range of motion in your joints, minimizing joint contractures, and improving circulation. In addition, an appropriate level of exercise can promote relaxation and a sense of well being. Warm whirlpool baths, molten paraffin application to the hands, and therapeutic massage by a medically qualified professional are also helpful for the joints. Swimming can be beneficial for joints and muscles if the water is sufficiently warm.

If daily tasks become difficult due to pain and stiffness, consult an occupational therapist to learn new ways to perform these tasks, so you protect the joints and reduce the pain.

The build-up of collagen in the skin can affect the normal functioning of sweat and oil glands, leaving the skin dry and stiff. Moisturize frequently with oil-based creams or lotions, especially after washing hands or bathing. Avoid harsh soaps and extreme water temperatures when washing and bathing. Always protect your skin against the outside elements by wearing protective clothing and sunscreen.

Several different complications of scleroderma converge to make mouth and dental care challenging. Tight, thick skin and a gradual reduction in the size of the mouth, and excessive dryness of the mouth from damage to the salivary glands are the two principal conditions that make oral hygiene and dental health difficult to maintain. Eating and speaking can also be difficult.

Work with your dentist, dental hygienist, and perhaps an occupational therapist, to devise effective ways to brush, floss and maintain oral hygiene. If hands are stiff and painful, different toothbrush styles and handles and special devices for flossing may help. Your dentist may prescribe special rinses and toothpastes that will provide greater protection against decay. Schedule regular dental check-ups and contact your dentist right away in the event of mouth pain, sores or loose teeth.

Drink liquids, particularly water, throughout the day; eat soft moist foods; and suck on ice chips or hard candy to keep your mouth moist. If drinking from a glass is difficult, use a straw or specially-designed cup. Avoid alcohol, tobacco, and dry, bulky foods, which can all be drying. Brush or rinse after eating to keep mouth clean and moist. For more serious mouth dryness, ask your doctor about saliva stimulants or substitutes.

Facial exercises are considered effective in promoting flexibility of the mouth and face. Consult a physical therapist who can recommend and monitor appropriate exercises and stretching devices.

Swallowing difficulties, heartburn and elimination issues such as diarrhea or constipation can all plague scleroderma patients. There are a number of measures you can take to manage these symptoms and maintain a greater level of comfort. Eliminate foods that give you heartburn or gas. These may include spicy or fatty foods, acidic foods and juices, and other foods such as cabbage, onions and broccoli, as well as alcohol and caffeine. Over-the-counter antacids can also reduce the symptoms of heartburn.

To make swallowing easier and further reduce heartburn, eat small frequent meals, emphasize moist soft foods, drink liquids while eating, and chew foods well.

Avoid lying down or reclining for at least two hours or more after eating to keep stomach contents from backing up into the esophagus. Raise the head of your bed so you’re sleeping at an incline.

Fluids, especially water, are helpful for constipation. Ask your doctor for a list of foods for either constipation or diarrhea, and discuss the available prescription medications that could help.