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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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.

10 comments

    • Tim Bossie says:

      Thank you for reading Mary. 🙂 We hope that you were able to get some answers and even some comfort from it.

  1. Kathryn says:

    Good piece, informative and succinct. I was diagnosed essentially by accident, by a sharp-eyed cardiologist, after a number of years being plagued by seemingly unrelated symptoms. I spent a long time feeling ashamed and guilty, thinking I had done something to myself, through neglect or improper eating, etc. Once it was “named,” all of the puzzle pieces fell into place and I stopped feeling like a freak of nature. Would Hopkins ever consider offering a webinar on scleroderma?

  2. Sherry Ellis says:

    Very informative and accurate based on my experience with Scleroderma. Mine initiated acutely in 2007 and so far well managed on current treatment plan. However, I have had to endure some lifestyle changes due to this disease, I refuse to give in.

  3. Laura Mollrich says:

    I was diagnosed in 1989 with Lupus Overlap (SLE; Scleroderma; and RA). Have had numerous organ involvement from SLE but now the CREST Scleroderma is causing the most of my issues–GI/Raynaud’s. I just had a Calcinosis Excision and Digital Sympathectomy. Recovery is not fun…or easy but I will make it! I knew all there is to know about SLE but had no idea what Scleroderma was and what it does to the body. I am very thankful to have found the Scleroderma News website. Thank you for helping us to understand this debilitating disease.

  4. Marilyn Gigliuto says:

    Very comforting and informative,do not know anyone with scleroderma.So it’s such a great aid to read up onThank you all.

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