With Scleroderma, Exercise Comes at a Cost
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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Comments
willistine pritchett
Thanks for all your info, on scleroderma .And my new Voice has helped me so much.Just getting better from [SIBO],took several months to find it lost a lot of weight also.The Voice what's up Doc was great. I wonder if I'll be having this often? I also have Raynaud's, which is really bad in cold weather.Please keep the good info coming.I've been living with scleroderma for over 16 years.Thanks willistine
Summer Perry
Sister I hear ya! I’m a former Division 1 college volleyball player and since I’ve been sick the best I can do with a work out is a vigorous walk around Balboa Island (I live in Newport Beach). It’s very disheartening. I watch so many people take for granted the opportunity to sweat and push themselves with a good run on the beach or squats at the gym all the time and find my self say dreaming of that intense feeling that used to file my days. Every now and again the competitor in me comes out and I “Just Do It” but seriously every time it sets me back a week. Extreme exhaustion, difficulty breathing, heart palpitations—I freak out and feel my skin getting tight (which I know doesn’t happen over night) and then the depression sets in. Like you I need to stick with baby steps. 30 minutes a few times a week and be full of gratitude my body let me do it. It’s nuts thinking I’m thankful for a walk in the part when i used to get forced to run times miles every morning during preseason, but life changes. You take the good with the bad and honestly get really excellent at making lemonade outta all the lemons you get tossed. ;) I love your columns, thanks so much for being an excellent voice to so many of us that can relate. It’s nice to know we are not doing this alone.
Langenfeld Carol
Thank you for this article! It confirms my own experience. Also to strengthen one area makes other health concerns worse. Or I start and then I have heart arrhythmias or something which stops me from even doing PT. Bless you for helping us feel understood. I also was a counselor so thank you for what you are doing!
Elizabeth Levy
Thank You So Much, Kim!
Yes, health professionals do not seem to understand what we go through. Everyone wants us to do things we simply cannot do...it's either have a conversation with someone in the morning, OR get out to do some food-shopping.
Either take a shower and wash my hair OR go out.
Once having gone out, I am in bed and unable to wash my dishes and/or vacuum and/or do laundry and/or change the sheets on my bed...etc. for days. I need days to recuperate from packing my cooler with blue ice, driving to a market, walking through the store, loading my cart, unloading my cart, packing refrigerated items in my cooler, taking the cart back, driving home, unloading everything (going back and forth up and down stairs), moving my car, then putting everything away and then lying down.
Everything is a process and there is always a reaction to every action, and most people don't seem to be able to comprehend this. Maybe they don't care or don't want to know, but whatever it is, it simply makes our lives more complicated than they already are.
Margie
Kim and Elizabeth.
Thank you for validating my pain and experience. Symptoms began about three plus years ago, then diagnosed just over two years ago. The experience has been humbling and awful. Thus far I have been essentially alone in the process. I am 62, by choice and by chance not married and no children.
I ache to get in contact with others, so I appreciate your validation. I recently moved to southwestern Arizona and look forward to being seen by Rheumatologists who specialize in Scleroderma. Hopefully I will be able to find a group of others to connect with.
Meanwhile, thank you. I too struggle daily to manage and keep up with daily living and survival through the pain and exhaustion. Thank you.
Rosalyn Harwood
Thank you! I would get tired and mentioned it to my Dr. who would say well that comes with getting older...I can relate to all of you as I was diagnosed with SCS-Idiopathic pulmonary fibrosis and have been put on meds to slow the progression to my lungs. I am learning what I can and ccannot do and takiing care of myself, This group has really been helpful.
Christel Goetsch
Wow. I also am doing my best to continue the regular exercise we need for so many different reasons. So, the dilemma is: should I expend my precious energy for exercise or making dinner, cleaning, shopping, seeing friends, etc? There sure isn’t enough energy in the bank for all of the above. Sure, I feel invigorated and proud of myself after a workout, but am not good for much else after it is done!
It’s good to hear from others who ‘get it’!!
Nicola blackmore
Thanks for sharing your stories I still am trying to find a balance being diagnosed 3 years ago having 3 children 15, 14 and 5 struggling day to day is a task and missing my former self :(
Rosalyn
Having to schedule all things. Moved dinner to noon as that is when I have the energy-sometimes...today I conked out and slept for an hour and a half...don't seem to be able to get much done..People don't get it as I look ok. My erxercise right now is walking my dog and getting out on my "Alinker" mobility bike. Each day is a new adventure as to what gets accomplished OR NOT. Thank you all for sharing, makes me feel less alone.
Diana
Hi Kim,
I am very interested in what chemicals you were exposed to.
I was a dental nurse for 18 years. I changed vocation when my mum got Alzheimer’s back in 2018. July last year I started getting pains in my hip joints, I also go to the gym and have done for years, at this time my dad was ill and I shopped going to the gym. My GP sent me for a hip x-ray 2 months later, it showed nothing, so back to the gym I went. My energy levels were so low. My dad sadly died in July last year. So my pains were put on the back burner. Still my GP kept saying continue with the gym. Beginning of march my husband asked how I got a bruise on the back of my leg. It wasn’t a bruise, and had no idea how long it had been there, it was round smooth and wax like to touch, my GP gave me Dactacort cream. I work in a hospital, so I showed the on duty doctor, he said go back now and ask to be referred to dermatology. I got an appointment for the 10th June. I then called referrals and they gave me th 20th may and asked me to get a letter of experdite, my GP then couldn’t give me an appointment till the 26th April, as they said I would need to see the GP first. The GP I was sent a picture to referrals and booked a blood test. At last I am getting somewhere. I now have 5 lesions on my body, of which i think is scleroderma, l am also wondering if it may have something to do with the Covid vaccine.