Scleroderma.

Last updated Tuesday, December 28, 2004

Figure 3 - Wrist splint

Coping

Strategies for coping

Most of what can be done to manage scleroderma depends on your own strong desire not to let it get the best of you, and on your common-sense approach to treatment.

Think of yourself as being in a partnership with your doctor. You both must work to keep the illness under control. Don't be afraid to ask questions. If there's something you don't understand, ask the doctor to explain. The better you understand the disease, the more actively you can help yourself feel better.

Skin protection

The goal of skin protection is to keep a good supply of blood flowing to your skin, and to protect skin from injury. Dressing warmly will help do this. Keeping your body warm helps open the blood vessels in your arms, hands, legs, and feet. Here are some tips for keeping warm:

• Wear gloves, especially if you have Raynaud's phenomenon.
• Always wear a hat in cold weather, since much body heat is lost from an uncovered head.
• Cover your face and ears with a scarf.
• During cool weather, wear thin cotton garments next to the skin. The cotton layer "moves" the sweat away from the skin, and keeps the sweat from cooling your body
• Wear wool: it's warmer than synthetic cloth like orlon.
• Wear many thin layers: they'll keep you warmer than one thick garment.
• Wear loose-fitting boots and shoes that won't cut off the blood supply and will allow you to wear warm thermal socks or layers of socks.

Other ways to protect your skin:

• Use a cold water room humidifier to keep skin moist.
• Avoid using strong detergents or other substances that irritate your skin.
• Try soap, creams, and bath oils that are designed to prevent dry skin, until you find the ones that give you the best results.
• Enlist help from family and friends. In the winter, for example, let someone else get the paper from outside or start the car on a cold day. The same goes for reaching into the freezer or doing tasks that require putting your hands into cold water.

Joint protection

Joint protection means protecting swollen and painful joints from stresses and strains that can make them hurt more. Lifting or carrying heavy objects, for example, can strain and hurt your joints.

Joint protection includes learning to perform daily activities in ways that will help your joints rather than strain them. Physical and occupational therapists can show you new ways to do activities, such as opening doors and drawers, getting out of chairs, carrying packages, ironing clothes, and brushing teeth.

Joint protection may also include resting individual joints in removable, lightweight splints to help control inflammation (see figure 3). Splints should be well padded to avoid pressure on any areas of the skin.

There are many devices that reduce stress on painful joints, which you can purchase or make at home.

Family and friends

Scleroderma should not stop you from having a loving relationship or having sex. Yet, because of the illness, there may be some emotional and physical concerns to consider.

Scleroderma may change the way you feel about yourself. You may feel you're not as attractive or fun as you used to be. You may feel less sure about your relationship with your partner. Yet, while scleroderma may change the way you look to some degree, it does not have to change the person you are.

Also consider your partner's feelings. If your partner is concerned about the fatigue, discomfort, pain, and emotional stress the illness causes you, he or she may hesitate to have sex. Discuss these feelings with your partner. Through honest sharing, you can find ways to solve these problems.

Although sex can play an important part in a relationship, it's love and caring that enrich the relationship. If sexual attraction decreases, it does not mean that love has decreased, also.

There are many things you can do to handle physical problems that may arise. If fatigue is a problem either before or during sex, try making love at different times during the day. Also pace yourself while making love, to save energy.

If joint pain is a problem, try using different positions while making love. A warm bath beforehand, and/or a waterbed or electric blanket may also be helpful.

Some men may have problems with impotence, due to the illness. Talk to your doctor about ways to treat this problem.

Some birth control methods, such as a diaphragm or condom may be physically difficult to use. In such cases, your partner may be able to help you insert or apply the device.

Also, some birth control pills may cause problems for women with poor blood flow. Talk to your doctor before taking these pills, and ask about birth control methods that will work for you.

Stress

There are emotional and social problems that come with having a chronic disease. Even if you can usually manage the illness, there may be times when you feel overwhelmed by problems.

Emotional stress plays a part in reducing blood flow. To help reduce the effects of stress you should:

• Get enough sleep. You may need to take short naps during the day.
• Try to avoid situations that make you tense.
• Try to keep feelings of anxiety and fear from getting the best of you.
• Express your fears and anger about what is happening to you. It is often helpful to confide in family, friends, your doctor, or a counselor. Family members also benefit from such open talks. If they can understand your problems and your feelings, they can help you deal with them.
• Ask your doctor to refer you to a social worker, counselor, support group, or community mental health center.
• Contact your local chapter of the Arthritis Foundation for information about resources in your community.
• Look into biofeedback training. It may help control Raynaud's phenomenon. Biofeedback may also help reduce pain and promote relaxation. Talk to your doctor about whether it would be helpful to you and where to get this training.

Climate

Resources

For more information, contact either of the following organizations:

Scleroderma Foundation, 12 Kent Way, Suite 101, Byfield, MA 01922, toll-free (800) 722-HOPE

United Scleroderma Foundation, Inc., 734 E Lake Ave, Watsonville, CA 95076-3566, (831) 728-2202

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