Tips for Living Well With Systemic Sclerosis

Take Control of Your Diagnosis

Photo of a doctor examining a woman's hand.
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If you have systemic sclerosis, you may understand how important it is for you to manage the disease properly. Your symptoms may be varied and your treatment options numerous, so finding the best treatment for your specific condition is important.

But what about living well with systemic sclerosis? Are there tips and tricks that you can use to live a full and active lifestyle and to cope well? Are there things you can do to manage your day-to-day life?

There are.

Understand Your Symptoms

Living well with systemic sclerosis means understanding your specific symptoms and how they behave. Symptoms of systemic sclerosis that may affect your quality of life include:

  • Dry mouth
  • Tight skin around the mouth, fingers, and hands
  • Shiny skin and patches of red, cracked, and irritated skin
  • Gastrointestinal changes including bloating and constipation
  • Hair loss
  • Fatigue
  • Joint pain and body aches
  • Swallowing difficulty
  • Calcium deposits under the skin
  • Raynaud's phenomenon
  • Small, red blood vessels visible just beneath your skin.

If you have any of these symptoms, check in with your doctor. The presence of one or two of these symptoms doesn't necessarily mean you have systemic sclerosis. A cluster of symptoms over a period of time is more indicative of the disease. Your doctor can help diagnose your condition and get you started on the right treatment.

Understanding your exact symptoms and disease can ensure that you get the proper treatment and it can make managing the condition easier.

Management of systemic sclerosis involves treating your specific symptoms. If you have tight, dry, flaky skin, you may benefit from lotions and emollients, for example. Cardiac dysfunction may accompany systemic sclerosis and you may have to visit a cardiologist to ensure your heart remains healthy.

Medication may be necessary to manage your body's immune response with systemic sclerosis, and anti-inflammatory medicines can control inflammation in your body.

Find a Support System

A significant number of people with systemic sclerosis suffer from anxiety or depression due to the disease. Having a strong support system may be an important component of living well with it. Working with a therapist can help you navigate the emotional and psychological challenges that may accompany systemic sclerosis.

Some people with systemic sclerosis benefit from finding a support group. The Scleroderma Foundation has a listing of various support groups, so finding one near you in your state should be easy. Spending time with people who are going through similar circumstances can help ease the emotional toll that the disease may take on you. Spending quality time with supportive family and friends can also help ease anxiety and depression.

Commit to Regular Checkups

Since systemic sclerosis may come with a variety of different and changing symptoms, meeting regularly with your doctor can help you live well with the disease. Your doctor can ensure that you are getting the best treatments for your specific presentation, and he or she may have knowledge of the latest research for your condition.

Being an active participant in your care can help you get control—and keep control.

Exercise Regularly

Have you ever noticed that people who exercise regularly seem to be happy? That's because exercise causes the release of natural chemicals that boost feelings of well-being. Exercise is an important component of living well with systemic sclerosis.

Excercise also helps maintain optimum range of motion and mobility in your joints and skin tissue. This can help you maintain full functional mobility so you can fully participate in work and recreational activities.

Avoid smoking

There are numerous reasons to avoid tobacco products and to stop smoking to maintain optimum health.

These reasons are amplified if you have systemic sclerosis. Research published in the Journal of Cell Communication and Signaling indicates that patients with systemic sclerosis who smoke experience increased gastrointestinal and vascular problems. They also are more likely to have breathlessness and show a decrease in lung volume on pulmonary tests.

Smokers with systemic sclerosis are also more likely to suffer from Raynaud's phenomenon. But there is good news: quitting smoking can reverse this trend. Bottom line: if you smoke, quitting can be beneficial. If you do not smoke, avoid starting.

Avoid Excessively Hot Showers

Many people with systemic sclerosis suffer from skin tightness and irritation. Excessively hot showers may have a drying effect on your skin, leading to increased cracking, soreness, and pain. Warm showers should be fine.

Gently pat your skin dry after a shower, taking care to watch for any broken or fragile skin. Application of a gentle lotion after showering can also help keep your skin smooth and protected.

Avoid Harsh Deodorant, Soaps, and Cleaners

Some deodorant soaps and cleaners contain chemicals that may dry or irritate your fragile skin tissue. Avoiding these products may help preserve your soft skin around your face and hands.

Avoid Cold Environments If You Have Raynaud's Phenomenon

Raynaud's phenomenon is a condition where there is a hyperactivity of the muscles of the walls of small arteries in the fingers and extremities. This can lead to decreased blood flow and a white appearance in the fingers. Pain may be accompanied by this lack of circulation. Raynaud's phenomenon can be caused by exposure to cold, so avoiding cold environments and keeping your hands warm can help control this problem.

Learn Makeup Application Techniques for Scleroderma

Many people—men and women alike—with systemic sclerosis feel self-conscious about skin irritation and discoloration on their hands and face. Some estheticians specialize in working with people with scleroderma and can provide tips and tricks to camouflage areas of the skin that may be discolored due to the condition.

Use Sunscreen

Although UV light may be beneficial for people with scleroderma, some medications for people with systemic sclerosis may increase sensitivity to sunlight. Using a gentle sunscreen can help keep your skin protected when spending time in the sun.

A Word From Verywell

What's the best way to get started on coping and living well with systemic sclerosis? Meet other people with the condition and learn everything you can about it. Your specific symptoms may behave in their own way, so stay tuned into your body and how it changes with various treatments and activities. Stay involved in your care and make sure you work closely with your doctors to ensure that you have the right management plan for you.

Currently, there is no cure for systemic sclerosis, so management of the disease is of utmost importance. Management of systemic sclerosis involves many different components, and living well with the condition can be achieved with the right amount of support and planning. By taking control of your disease process and being proactive in your care, you can be sure to enjoy an active lifestyle with systemic sclerosis.

Sources:

Leask, A. When There's Smoke There's...Scleroderma: Evidence That Patients with Scleroderma Should Stop Smoking. J Cell Commun Signal. 2011, Mar; 5(1): 67-68. doi: 10.1007/s12079-010-0111-1

Scleroderma Handout On Health. NIAMS. http://www.niams.nih.gov/Health_Info/Scleroderma/default.asp

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