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.


    • 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.

    • Laurie says:

      Hi Sherry – Can you provide info on what your current treatment plan is? It’s encouraging to read you’ve so far managed well.

  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.

  5. Helena T says:

    I was diagnosed with diffuse systemic sclerosis in July 2017 after 2.5 years of symptoms. I had trekked from doctor to doctor who failed to correctly diagnose me. Thanks for all the information you put up. It’s very useful. It’s hard for people close to me to understand a disease they mostly can’t see the symptoms of.

  6. Marcela Fernandez says:

    I have been living with scleroderma since I was 12. I am now 49 and doing relativly well. I have a full time job teaching and I have a 16 uear old son. Living with scleroderma is a struggle but I plan to continue living my life to the fullest. Thank you for helping to build awareness.

  7. Sandee sparks says:

    A very astute GP was concerned with my daughter’s syptoms Oct. 2017 after some blood tests and got us to a RA doc. He is treating her aggressively (she’s 24). She is on cellcept and prednisone. She is making changing in her life. We are now waiting to get into the Cleveland Clinic in Tampa. I find the articles and videos this website offers to be very helpful and insightful. I enjoy the blogs. Thank you

  8. Rachel says:

    It is a rare disease that typically forms in people at an old age… its funny, like Marcela I was also diagnosed as a child (8), I keep meeting more people who are diagnosed as children than as adults, and even though its a “rare” disease” there are SO many of us survivors 😀

  9. dorothy says:

    besides the skin and figure tips’ problems along with years of GURd. I now find that my stomach is a compost and I need to go on a liquid diet for a month. need help with suggestion on how to do this and keep my weight and energy. where can I find help. anyone else doing a liquid diet? also have had 4 kidney transplants but never told it was due to sclodema

    • Jersey Jane says:

      Just diagnosed with scleroderma. Have had raynauds, dry mouth and eyes, red dots and small mouth for years. Gerd is relatively new. However shocker was repeated ‘episodes’ (lots of pain, vomiting, etc.) plus 30 lb weight loss without trying) only to find that small intestine had been blocked by lots of scar tissue (from old appendectomy) for 2-3 years. Since operation to remove 2 months ago, system finally working like normal. If I/we grow unwanted scar tissue, what’s next?

  10. Elaine says:

    Was diagnosed with severe RA Jan. 1, 2018 and have been seeing a Rheumatologist. He and other people have noticed my blueish/purple fingers inflamed fingers and I thought nothing of it…thought the pain and weakness in my hands, feet and back was ‘one of those things’ my Rheumy thought I had Lupus at first after 3 blood tests, then after more blood tests he said I have Scleroderma. I will be seeing a specialist next month and have been doing as much research as I can about the disease. For the past 7 years, I haven’t understood why I’m tired all the time, my hands and feet are always cold, I’m so sick and tired of ALWAYS being sick with colds, flu, stomach viruses and bronchitis. I also have severe acid reflux and wake up choking from aspirating stomach acid while I sleep. Never thought to ‘add it all up’ and that it would point to this disease.

    Looking forward to getting some answers from the Scleroderma Specialist next month and hopefully she can help me.

  11. Lisa M. says:

    I went undiagnosed for over 25 years. We tried, for 10 years, to find a good dr, who would figure out what was really going on, but after one labeled me with Fibromyalgia, nobody else seemed to be motivated further. During those years and those appointments, not one doctor touched me with their hands during “exams”, even though my symptoms never matched any that I read about regarding Fibromyalgia. Thankfully, we finally moved to WA state, and soon after, my new RA diagnosed me with Multiple Connective Tissue Disease: Systemic Lupus, Scleroderma, and myositis. I just have yet to find someone who actually treats scleraderma. I do live in a small community.
    I haven’t slept all night in over 5 years, and the pain has spread much further, and has changed actually to something that I can’t control with meds, position, acupunture, etc. I do need more help than I have, yet since I finally have some, I don’t want to be ungrateful, or complain.

  12. Diane says:

    Hi, my name is Diane and I test positive for scleroderma and ANA is positive,but my doctor doesn’t treat me . I am in a lot of pain I always think it’s my new medicine for blood pressure, which I’ve tried about eight different ones. I’m starting to think it’s all scleroderma causing my symptoms. My legs hurt, my arms raynauds upper Gi problems. Can anyone help. Thank you.

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