Living with hypertrophic cardiomyopathy (HCM) can make staying active complicated. Shortness of breath, chest pain, fatigue, dizziness, or fainting may affect what you can do or how you feel about exercising.

Current guidance says people with HCM should generally be encouraged to do mild- to moderate-intensity recreational exercise, but the right approach depends on your health and individual risk. Your cardiology team can help you decide on an exercise plan that’s appropriate for you.

Knowing the recommendations is only part of the picture. In MyHeartDiseaseTeam discussions such as “How do you stay active?”, members have talked about what staying active actually looks like from day to day. Their experiences include starting with very small amounts of movement, changing plans when necessary, and learning to work with fatigue and other symptoms.

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Here are five lessons members have shared about adapting activity to life with HCM.

For some MyHeartDiseaseTeam members, becoming more active didn’t begin with a long workout. It began with a few minutes of movement.

One member described gradually increasing their activity: “I was told to start with short walks (five minutes) twice a day and eventually increase the time every week. I’m now up to 30 minutes of walking or biking, five days a week. At first I was concerned … but now I can see how I improved.”

“I was told to start with short walks (five minutes) twice a day and eventually increase the time every week. I’m now up to 30 minutes of walking or biking, five days a week.”

— A MyHeartDiseaseTeam member

Another member’s starting point was even smaller after being bedridden: “I started out by changing my diet. … I eventually was able to stand up during commercials while watching television. It turned into walking in place, and so on and so forth.”

Experiences like these show that being active doesn’t have to mean starting with a traditional workout. What progress looks like can depend on where you’re beginning and what you’re able to do.

How you feel with HCM may not be exactly the same every day. Some members value activities that allow them to change the pace or intensity depending on how they’re feeling.

One MyHeartDiseaseTeam member likes the flexibility of exercising at home: “My stationary bike is a God-sent machine. I can go slow or fast. The pace is always based on how I feel.”

Another member described adjusting during a swim: “The swim was great. … I had a twang of pain a couple of times so I just slowed down, took in some healing breaths (slow), and switched to a different exercise.”

“I had a twang of pain a couple of times so I just slowed down, took in some healing breaths (slow), and switched to a different exercise.”

— A MyHeartDiseaseTeam member

Finding an activity you can modify may make it easier to respond when your energy or symptoms change. Talk with your cardiology team about which types and levels of activity are appropriate for you.

Being active doesn’t have to look the same every day. Members described changing what they were doing based on how they felt or what was happening around them.

One member decided to cut a walk short after noticing a symptom: “I was walking yesterday in the park, and I got a twitch in my chest telling me to go home, and I did.”

If you notice new or worsening symptoms during activity, stop and give yourself time to recover. Let your healthcare team know about changes in symptoms, and seek prompt medical care for symptoms that are severe or don’t improve.

Weather can also affect plans. One MyHeartDiseaseTeam member found an indoor alternative on a hot day: “Yesterday it was too hot to walk outside … so I went to the gym. … It was nice and cool!”

Another suggested a different indoor option: “Walk the 2 miles inside Walmart or another air-conditioned building. I like walking in the mall.”

Members also reminded one another that everyday movement can count. One person offered encouragement after hearing about someone’s daily activities: “You are very active walking to your mailbox and taking out the trash. You completed many chores. Well done.”

“You are very active walking to your mailbox and taking out the trash.”

— A MyHeartDiseaseTeam member

For these members, adapting the plan helped them find different ways to keep moving rather than measuring activity against one fixed routine.

Shortness of breath and fatigue can make physical activity more challenging for people with HCM. Members described learning how these symptoms fit into their daily routines.

One member said, “I cope with fatigue and shortness of breath daily. … I exercise 99 percent of the time. I am very active, and I take one day at a time.”

Another member described how tiredness could catch up with them after an active day: “I can walk miles, and I completed 6 miles on the stationary bike today. … When I finally returned home at 6 p.m., I was so exhausted.”

Treatment can be part of the picture, too. One member described their experience with a medication: “The one issue I have to deal with now … is the effect of metoprolol. A side effect of this med is fatigue. … In saying that. I continue to exercise and continue with my life.”

If fatigue, breathlessness, or treatment side effects are making it difficult to be active, talk with your cardiology team. They can help you think through what you’re experiencing and how it affects your activity plan.

For some people with HCM, the challenge isn’t only physical. Worrying about what might happen during exercise can also affect how comfortable you feel being active.

One MyHeartDiseaseTeam member described hoping that a supervised cardiac rehabilitation program would help them regain confidence: “Now, I am going to cardio rehab for 36 weeks. Now my heart will get stronger ♥️, and the fear of collapsing from exercising will be put to rest, and my new lifestyle will be greatly appreciated.”

Other members described movement as important to their emotional well-being. One said, “Exercise is my lifesaver right now. Without it, I would be in a dark place.”

“I am going to cardio rehab for 36 weeks. Now my heart will get stronger ♥️, and the fear of collapsing from exercising will be put to rest.”

— A MyHeartDiseaseTeam member

There’s no single measure of success when it comes to staying active with HCM. For some members, progress means doing more over time. For others, it means adjusting an activity, recognizing when plans need to change, or simply finding a way to move that works that day.

Working with your healthcare team can help you find an approach that fits your health, symptoms, and goals.