12 Things to Care for When You Have Scleroderma

According to the John Hopkins Scleroderma Center, scleroderma takes a big toll on your body, both emotionally and physically. There are a number of body parts that may be directly or indirectly affected by scleroderma and should be watched. Since scleroderma varies from patient to patient, the symptoms and physical effects can be very different.

Knowing how scleroderma affects the body will help classify the type of scleroderma: limited scleroderma or diffuse scleroderma.

1. Skin

It is important to assess if there is skin damage and its level of involvement. For that, the physician usually performs a skin score by palpation in order to assess the degree of thickening.

At least 17 areas are evaluated and scored from normal (0) to severe (3) and summed up. The physician will look at the feet, lower legs, upper legs, abdomen, chest, face, upper arms, forearms, hands and fingers.

2. Kidneys

Diffuse scleroderma patients have a higher risk of kidney disease (also known as scleroderma renal crisis). Evidence shows that the renal blood vessels may suddenly constrict (known as the Raynaud’s phenomenon of the kidney).

This condition often appears as new systemic hypertension which may be asymptomatic. If this is the case, check your blood pressure regularly.

3. Lungs

During the disease process and progression, the blood vessels and lung tissue may be affected. Therefore, it is usually recommended to do a full set of pulmonary function tests such as spirometry, lung volumes, and diffusing capacity.

It is often challenging to determine the lung involvement in patients with scleroderma because of the possible absence of symptoms.

Here are seven tips to manage your fatigue.

4. Heart

Usually, scleroderma patients don’t have serious heart conditions, but it is still necessary for care in this area. Non-scleroderma causes of heart disease are more common, but scleroderma patients still need to be assessed whenever possible.

In scleroderma, heart disease is often asymptomatic until the late stages of disease. The heart may be affected by scleroderma microvascular disease, tissue fibrosis, pericardial disease and inflammation of the heart muscle (myocarditis).

5. Gastrointestinal Tract

Research suggests that the involuntary muscle of the GI tract (smooth muscle) can be affected in patients with scleroderma.

When this happens, it causes an abnormal motor function of the small or large bowel, stomach, and esophagus.

Therefore, the patient may experience all or some of the following symptoms: difficulty swallowing, heartburn, dyspepsia, delayed emptying/early stomach filling, diarrhea, and constipation.

6. Dry Eyes and Mouth

In scleroderma patients, one very common complaint is the feeling of dry membranes of the mouth and eyes.

This is caused by a dysfunction of the tear or salivary glands secondary to an autoimmune process or tissue fibrosis.

Here are some scleroderma-related conditions you should look out for according to the Scleroderma Foundation.

7. Joint and Muscle

Since musculoskeletal pain is common in rheumatic diseases, scleroderma is no exception. Physical examination may detect arthritis but muscle disease may be asymptomatic until weakness occurs.

8. Raynaud’s Phenomenon

Cold intolerance and Raynaud’s phenomenon are seen in most scleroderma patients.

Winter months tend to worsen these symptoms and complications such as digital ulcerations are more likely to appear.

9. Constitutional Symptoms

Constitutional symptoms such as low energy and fatigue are common, especially when the disease is in its active phase. Patients may also find it difficult to sleep normally since rest is often disrupted by pain, depression, fear of the illness, skin itching and/or specific internal organ dysfunction (e.g., shortness of breath from heart or lung failure or heartburn from gastrointestinal reflux).

Also, note that the lack of sleep amplifies considerably the symptoms during the daytime (like diffuse soft tissue pain and fatigue).

Learn more about muscle, joint and nerve pain in scleroderma patients. 

10. Psychological

Although scleroderma does not seem to cause central nervous system dysfunction, it is associated with some mood disorders (depression), altered self-image and sexual dysfunction.

Patients may hide some of these symptoms because of embarrassment or the fear of appearing psychiatrically ill or discovering an emotional illness.

11. Sexual Function

Sexual function is usually affected by scleroderma but it’s rarely discussed or managed. Erectile dysfunction is probable among men and dryness of the vaginal area is common among women.

12. Quality of Life

Acknowledging the physical, social and emotional toll scleroderma takes and adapting to your new needs can improve your quality of life.

Despite there being approximately 300,000 people in the U.S. who have scleroderma, it seems that many people are either completely unaware of the disease or are confused as to what the disease actually is.

Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.