Desmoid tumors can make exercise feel uncomfortable or unbearable. One MyDesmoidTumorTeam member reported that they had to take a break from their favorite activities due to their pain: “I love to kayak, but I had to cut back.”

While it’s important to listen to our bodies and avoid irritating activities, it’s also important to exercise regularly to support our overall physical and mental health. Another member expressed hope of returning to their exercise routines. “I know it seems petty to be concerned about my sport when there are bigger issues on my plate right now,” they wrote. “It keeps me sane knowing I’ll return to it one day.”

This article offers five tips for managing symptoms while staying active and maintaining your quality of life. Keep in mind that everyone’s condition is different, and desmoid tumors can develop in different places in the body. Not everyone has the same restrictions. Always consult your healthcare team to get tailored medical advice.

1. Keep Track of Activities and Symptom Patterns

Desmoid tumor is a rare condition, and medical experts are still learning more about it. Desmoid tumors cause different symptoms in every person, depending on their location. For this reason, keeping a journal of your symptoms before, during, and after activities can help you and your doctor understand how your tumor affects your body. Noting your symptoms may also help detect tumor changes during active surveillance (wait-and-see approach) or after treatment.

Extra-abdominal desmoid tumors (tumors outside of the abdomen) may be the most obvious to track. If you have one in your shoulder, for example, you may notice symptoms when using that shoulder to lift a weight or hold a yoga pose. Write down a few observations, like:

• Which exercises you did
• Where symptoms were felt, like near the armpit
• Which symptoms were felt, like pain or limited motion
• How symptoms changed before and after exercise
• How long symptoms lingered after exercise
• If symptoms were better, worse, or the same as last time

Intra-abdominal and abdominal wall desmoid tumors have their own unique symptoms to watch out for and may not be as obvious. For example, someone with a desmoid tumor in their belly may not have pain or limited motion in their arm or leg, but they may need to keep an eye on their nausea levels or bathroom patterns.

One MyDesmoidTumorTeam member highly recommends journaling: “I try to remember to journal every day so that I have notes when I meet up with my doctor. We forget things under stress.”

2. Find Alternative Exercises To Avoid Painful Movements

If you’re experiencing discomfort with specific exercises because of the location of the desmoid tumor, you may want to talk to your doctor about how much discomfort is allowed or how to address this discomfort. Your doctor may advise avoiding highly uncomfortable movements to manage pain and stress and instead encourage other exercises to keep an active lifestyle.

Some exercise swaps your doctor may recommend include:

• Biking — A low-impact alternative to walking or running if body twisting or arm swinging is painful
• Tai chi — A calming, fatigue-fighting form of martial arts that can be a gentle alternative to boxing or rhythmic activities, like dancing
• Swimming — An activity that gets the heart pumping and works against water resistance to build endurance and strength, similar to jogging and weightlifting

This isn’t to say that you can never return to once-painful activities. Some desmoid tumors can stabilize or shrink during active surveillance, but this isn’t guaranteed. You may also undergo treatment to try to change the tumor’s size and its impact on your body, which may allow for more comfortable movement after rehabilitation.

Finding a comfortable alternative exercise may be challenging because of where the desmoid tumor is located. “My desmoid tumor is in my neck,” wrote one member. “I’m hoping to find some exercises that I can do without straining my neck, but it’s difficult.”

In some cases, a physical therapist can help by recommending other types of exercise, stretches, and form adjustments to make physical activity feel more comfortable.

3. Adjust Exercise Intensity With Pain and Fatigue

Fatigue is a common symptom among those with desmoid tumor, often caused by long-term pain, inflammation, or treatment side effects. “My biggest symptom was extreme exhaustion when I was first diagnosed,” explained one member.

Research also suggests that up to 73 percent of people with desmoid tumor experience sleep issues due to pain, which can also add to overall fatigue.

One member noticed more fatigue on painful days because they weren’t breathing properly. “I tend to hold my breath a little with the pain,” they wrote. “I catch myself doing it every once in a while, and it can make me feel exhausted.” Another member could relate: “I notice I get tired from all the pain, so I haven’t been exerting myself much. I love walking, and I had to cut my pace and time a bit.”

When experiencing pain and fatigue, adjusting your exercise intensity may be better than stopping altogether. Even if you only have energy to do gentle breathing exercises before bed, it can help control pain while calming the body for a good night’s sleep. If your doctor has prescribed you pain medication, it is helpful to take the medication before your planned activity. This maximizes the peak timing when the pain medication acts the most in the body.

See your doctor or a physical therapist if you need guidance while balancing exercise intensity, pain, and fatigue. You can try a few ways on your own, including:

• Reducing the demand on your body, like running slower or lifting lighter weights
• Adjusting your range of motion, like lifting your arm only to where it’s comfortable
• Doing smaller exercise bouts throughout the day, like 10 minutes of walking every hour instead of one bout of 60 minutes
• Shortening your exercise time for the day, like swimming 20 minutes instead of 30 minutes
• Choosing lower-impact versions of activities, like step-ups instead of box jumps

4. Ramp Up Post-Treatment Exercises Slowly

Treatments — or a combination of treatments — for desmoid tumor can take a toll on the body. With some treatments, like the ones listed below, you may need to take extra care when continuing or restarting exercise.

• Medications — Many medications have side effects (like fatigue), especially more aggressive options like chemotherapy.
• Radiation therapy — This treatment is used to shrink or destroy the tumor, but it has many side effects, including skin irritation or damage to healthy tissue.
• Surgery — Surgery may remove the tumor and some healthy tissue around it, which can take time to heal.

Your doctor may refer you to physical therapy after treatment to help you recover and regain function. If you’ve had surgery to remove a desmoid tumor near a joint, for example, you may need physical therapy to help you regain mobility and muscle strength in the area. The process could take several weeks, which may limit how active you are for a while.

With time and consistency, you may be able to ease back into a regular exercise routine with guidance from your healthcare providers. But it’s important to stick to the treatment plan to avoid complications, no matter how slow it may seem.

5. Keep Moving if You Can

While staying active may seem like the opposite of what you should do, the right exercise can help manage pain, improve sleep, combat tiredness, and lift your mood.

Physical activity guidelines recommend at least 150 minutes of moderate-intensity aerobic (endurance) activity per week, like brisk walking or gardening. Or, you can do 75 minutes of vigorous aerobic activity per week, like swimming laps or running. They also recommend two days of muscle-challenging exercise, such as weightlifting. These recommendations are actually not different from the recommendations for healthy adults without desmoid tumor.

While these recommendations can feel challenging when living with desmoid tumor, especially if exercise is new to you, don’t feel like you need to meet them right away. Work with your care team — particularly during or after treatment — and do what you can. The less you sit and the more activity that you attempt to do comfortably, the better you can protect yourself from other diseases that can complicate your care, like heart disease and diabetes.

Unsure how to get started or how to adjust your exercises to meet physical activity guidelines? Talk to your doctor about developing an exercise program and choosing the activities that are right for you.

Join the Conversation

On MyDesmoidTumorTeam, people share their experiences with desmoid tumor, get advice, and find support from others who understand.

How do you exercise with your desmoid tumor? Let others know in the comments below.