Is it normal aging, or is it related to my scleroderma?

As we get older, how can we tell the difference between the effects of aging and the symptoms and comorbidities related to scleroderma?

When most people think of scleroderma, aging with the disease doesn’t immediately come to mind. When I first read about it in 1974, patients with the disease had far fewer treatment options than they do today. That’s changed, thankfully, and we’re now likely to survive for a longer time.

My diagnosis came when I was a 30-year-old wife and mother. My rheumatologist told me the disease could affect every organ in the body, and she was concerned that my case seemed to be progressing fast. Beyond the physical, it’s not uncommon for people to experience fear and anxiety with any serious illness, and I did.

But over 30 years later, here I am, a senior citizen with scleroderma.

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My symptoms and comorbidities

Before I turned 60, I had diabetes and hypertension. I had two heart attacks related to blood flow problems with my heart. I’ve had heart failure, chronic anemia, and both types of lung involvement: interstitial lung disease (ILD) and pulmonary arterial hypertension.

A little shortness of breath, occasional fatigue, and minor aches and pains can be a normal part of getting older. Heart problems and anemia can cause fatigue and shortness of breath, too. But in my case, all of the above were related to my scleroderma. I’m glad I told my doctor about these potential comorbidities and symptoms of scleroderma because lung involvement, in either limited or diffuse forms, is the No. 1 cause of death in scleroderma.

So whoever is managing your scleroderma must know how to diagnose and treat it. They should also know what happens when it isn’t treated.

It was recently confirmed that I have diffuse skin involvement and anti-U1 ribonucleoprotein (U1RNP) antibodies. People with scleroderma and anti-U1RNP antibodies can apparently have symptoms of arthritis and other autoimmune diseases, including myositis, which causes inflammation and pain in the muscles.

Being positive for anti-U1RNP antibodies is also associated with the development of scleroderma-related ILD. That’s why it’s important to listen to your body and keep track of your symptoms over time. That’s especially helpful when you have scleroderma, as serious organ involvement can be associated with its many symptoms.

Staying aware of your body

It’s important to be mindful of the changes you feel over time, as this will help your physician manage your condition. While everyone sometimes feels pain or occasional stiffness with movement as they age, your physician needs to know if these feelings go beyond what you commonly experience.

Another area to observe: How does your physical ability compare with that of others your age? When I was 20, I could do what most people my age could do without much difficulty. I started walking for exercise and then jogging, and then I added some light weight training. In my 30s, I cycled for exercise. In my 40s, I walked. When I was 52, my care provider ordered supplemental oxygen during activity.

But shortness of breath is not the only symptom of scleroderma lung disease; aching muscles can also be a symptom, and a sign that our muscles aren’t getting enough oxygen. Until recently, for instance, I could do elastic band exercises while sitting without much trouble. Now I experience a great deal of pain when doing them. This pain isn’t the soreness of overused muscles; it’s pretty intense. It’s a burning so strong that I had to struggle to complete each repetition; continuing took great effort.

I knew this feeling wasn’t right because it was out of the ordinary for me. Intense pain is a message from our bodies that something is wrong.

One way to stay aware is to keep a journal. Listening to your body and making note of how your symptoms affect your daily routine is a great way to help your physician manage your disease.

Nevertheless, I haven’t been writing in mine for a couple of weeks because my breathing symptoms have been worsening. For a long time, I’ve had problems with chronic fatigue and pain, mainly in my spine and my knees. I used to believe that by determination and willpower alone, I could ignore my symptoms and go about my routine. Many people who are aging seem to have difficulty accepting the changes that come with age — and they may attempt to deny or ignore them. I’ve tried that. But it doesn’t help.

“Turn! Turn! Turn!,” that old song by the Byrds, tells us that there’s a time for everything, and everything in life has a season. Change is a fact of life, but so is adaptation. Rather than fight life’s changes, we should choose to embrace them.

Note: 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. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.