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Exercise does a body good. But when you’ve been diagnosed with transthyretin amyloid cardiomyopathy (ATTR-CM), a type of cardiac amyloidosis, staying active can be tough.
“Walking and swimming are my go-to for exercise and activities,” shared a member of MyAmyloidosisTeam. “I also enjoy tennis and play with a great group of guys. However, there are times during the match when I need to catch my breath.”
Here’s what people with ATTR-CM should know about exercising safely.
Physical activity can improve your quality of life. It can help you avoid other health problems, maintain a healthy weight, and sleep better. One member of MyAmyloidosisTeam explained how exercise improved their ability to do everyday tasks:
“About the time I was diagnosed with amyloidosis, if I dropped the soap in my tiny shower, it was a difficult thing to bend over and squat to pick it up. I realized this was a problem, so I started an exercise program.”
Another member wrote, “I work out at a local gym three to four times a week. I take breaks when I need them and naps if I get too tired in the afternoon. Routine exercise helps me stay as strong as I can be. It also makes me feel better.”
There are different ways to treat ATTR-CM and slow disease progression. But clinical trials show that amyloidosis treatment alone isn’t enough to stop your muscles from getting weaker over time. It’s common for exercise tolerance to decline with amyloidosis. Getting activity (such as through a cardiac rehabilitation program) can help you maintain your exercise capacity.
You should ask your healthcare provider if exercise is safe for you. They can guide you on the right program to follow based on your heart health and fitness level.
ATTR-CM makes the heart less flexible. A buildup of amyloid deposits can impair the heart muscle’s ability to squeeze and relax. As a result, it struggles to pump blood effectively. This presents a problem when it’s time for intense exercise.
Amyloidosis can affect people in different ways. It may be easier for someone with a mild case to continue exercising normally than for someone with severe symptoms. If you have an irregular heartbeat, you may need to be especially careful with certain types of activity.
Sometimes amyloidosis also affects the nerves, joints, or muscles. These issues can affect balance and strength, so some activities may be limited or need modification.
A condition called chronotropic incompetence can also happen with amyloidosis. This limits the rise of your heart rate, affecting your exercise stamina.
Some members of MyAmyloidosisTeam have noticed that exercise is getting more difficult. But they also feel that taking breaks sets them back.
“It seems that any exercise I do is more tiring than the last time. I have no energy to exercise anymore,” wrote one member.
Always listen to your body. Exercise should leave you feeling energized, not completely wiped out. Follow your healthcare provider’s advice on how often and how intensely you should exercise.
Before you begin an exercise program, your healthcare provider can run some tests to measure your baseline (or starting point). Cardiopulmonary exercise testing (CPET) is a stress test that measures your heart function during exercise.
Your healthcare provider will give you special breathing equipment to wear while you exercise on a treadmill or stationary bike in the doctor’s office. This test will provide a safe heart rate zone that you should aim for when exercising on your own. It’ll also determine your aerobic threshold, which is the point where you should slow down.
Overtraining isn’t good for anyone, especially someone with a heart condition. No matter where you start, be careful to increase your activity gradually.
“I’m learning to balance exercise and rest,” wrote a MyAmyloidosisTeam member. “Also learning that exercising lightly can be more beneficial than maximal exercise.”
Some signs that you may be over-exercising include:
Cutting back for a week or two can help you feel better. An active lifestyle requires support. Remember to drink plenty of water, get enough sleep, and eat well. Also, avoid putting added stress on your body. Don’t exercise in extremely hot or cold temperatures.
If you’re nervous about exercising, ask your healthcare provider about a supervised exercise program. This can include monitoring your heart rate, blood pressure, and breathing during activity. Your provider can also track your progress over time.
When you’re ready, you can ask for a custom exercise prescription to do at home. This is based on the results of your stress test. It may include walking or other aerobic exercises you enjoy.
Some ideas include:
Resistance training and stretching are also essential to stay strong and flexible. You may use your own body weight, resistance bands, free weights, or weight machines. Staying in touch with your healthcare team and adjusting your program as needed will help ensure it continues to work for you.
Monitor your heart rate during exercise to stay in your recommended zone. You should stop exercising right away if you notice any of these symptoms:
Call your doctor to report your symptoms. They can help you decide whether you need to go to the emergency room.
If you’ve taken a couple of weeks off from exercise and still feel really sore or worn out, you should give your cardiologist a call. They can tell you if you need a little more time off or if something else might be wrong.
On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.
How do you feel about exercise? Let others know in the comments below.
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