With Scleroderma, Exercise Comes at a Cost

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My cardiologist has given me the OK to go back to the gym. I’ve been waiting for his clearance for a long time. Working out at the gym was how I stayed healthy and in shape before being diagnosed with scleroderma.

Since becoming ill, I have spent what seems like years in my recliner, medicated with prednisone and opiates, and feeling hungry, sluggish, fatigued, and in pain. The weight has piled on. My body has become something that does not represent my inner self.

My medical team is all smiles and encouragement. They want to see me get fit and lose weight. But while listening to their motivational talk designed to get me going, I got a whiff of a “used car salesman.” Notions of “let’s get this old bomb off the lot” came to mind. I dismissed these as my own defenses.   

Returning to the gym was daunting. My bright pink leotard and leg warmers from the 1980s weren’t going to cut it. But squeezing myself into a modern pair of Lycra workout tights was an experience. By the time I got them on, I was out of breath and felt like I’d completed my first workout.

Over the past four months, I’ve made small steps as I’ve gotten into the swing of things. I can now manage 30 minutes on the recumbent bike, and another 30 minutes using machines to work out various muscle groups.

Everyone is encouraging, which is lovely, but here’s the thing: I have found that the cost for chronically ill patients to exercise is high. And I’m not referring to gym membership fees.

Health professionals enthusiastically tell me that working out three times a week is best. They remind me of the benefits and spur me on with positive affirmations. They know I can achieve it. I also know this to be true, but it has cost me in other areas of my life.

When I go to the gym, it costs me an entire day. That leaves me four weekdays to achieve everything else, including light housework, catching up with friends, writing my column, spending time with family, and having time for myself. Those are the basics of life, and are difficult enough to balance without scleroderma. 

After working out, I experience extreme fatigue and increased pain. No matter what adjustments I make in the gym, it is always the same. Once I am home, I can manage a shower before falling asleep for at least two hours. Often, I am still fatigued when I wake up and I need extra pain relief.

To reach my healthy weight, keep my ligaments and muscles oxygenated, and increase my circulation, I have to stop my life three days a week. The personal cost is high. And while my body is beginning to get a new shape inside and out (in a good way), so is my life (in not such a good way). 

Don’t get me wrong. Exercise is important for chronically ill patients. The benefits are proven and worth the effort.  

But do enthusiastic health professionals understand the high cost of exercise for chronically ill and immunocompromised patients? I don’t usually sign up for something unless I know the real cost before parting with my money.

Would I have started exercising had I known my cost? Definitely. But honest disclosure about the reality would have been best. At least I would have been able to prepare mentally. It’s only fair.

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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 Services, and are intended to spark discussion about issues pertaining to scleroderma.

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