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Desmoid tumors can change how different parts of the body move and feel. Maybe one day you notice stiffness where there wasn’t any before. Over time, bending, stretching, or reaching may feel more difficult or uncomfortable. If these changes happen slowly, it can be easy to overlook them at first. But when movement becomes limited, it can take a toll on daily routines, independence, and overall quality of life.
In this article, we’ll discuss how certain desmoid tumors can interfere with movement and why this happens. We’ll also explain which tumor locations are most likely to cause movement problems, and how certain treatments may also contribute. Finally, we’ll discuss how doctors treat and manage these types of issues for people living with desmoid tumors.
Desmoid tumors can affect range of motion in several different ways. Much of this depends on where the tumor is located and how it grows. These tumors often form in deep soft tissues, such as muscles, tendons, and connective tissue (tissue that surrounds joints). As they grow, they can push into or wrap around nearby structures instead of staying in one spot. This pattern is called infiltrative growth, and it’s one of the main reasons movement can become limited.
When a desmoid tumor grows inside or next to a muscle, it can make that muscle stiff and less flexible. Muscles may not stretch or contract the way they should. Over time, this can make it harder to bend, lift, or reach for items, or make walking feel tight or painful. Desmoid tumors in the arms and legs are especially known to cause reduced range of motion and trouble with daily activities. Tumors located near joints are also more likely to restrict normal movement.
Pain also impacts range of motion. Many people with desmoid tumors have ongoing pain or aching. When something hurts, the body naturally tries to protect itself by moving less. This can lead to stiffness, weakness, and even more loss of motion over time. Nerves and blood vessels can also be affected. Pressure on nerves may cause burning, tingling, or weakness, which can limit movement even more.
Not all desmoid tumors will affect movement the same way. Some people may have tumors that cause very few movement issues. Others may notice stiffness, pain, or loss of function early on. Where the tumor grows in the body can play a major role in whether range of motion is affected and how severe those problems may be.
Extra-abdominal tumors grow outside of the abdomen (belly). Desmoid tumors in the arms and legs are common locations. These tumors are among the most likely to cause reduced range of motion, especially difficulty walking and moving around.
Tumors in the arms or legs often grow within muscles or along connective tissue near the joints. As they get bigger, they can restrict how muscles stretch and how joints move. People with desmoid tumors in the arms or legs often report pain, stiffness, weakness, and difficulty walking or using their limbs for daily tasks.
Abdominal wall desmoid tumors grow inside the muscles of the stomach area. While they don’t affect joints directly, they can still interfere with movement. People with abdominal wall tumors may notice pain or tightness when bending, twisting, or standing up straight, especially if pain increases or the tumor grows.
Desmoid tumors that grow near joints or inside large muscles are more likely to affect how you move. For example, tumors near the shoulder or elbow can significantly reduce overall strength and mobility.
Desmoid tumors in the chest wall, upper back, or neck can affect upper body motion. These tumors may also limit shoulder movement, cause pain with deep breathing, or restrict neck movement. Even small reductions in mobility can have a noticeable impact on function and quality of life.
Certain treatment interventions can also affect how your body moves, especially in the short term. Surgery is one example. When a tumor is removed, surrounding tissues, tendons, or connective tissue may also be affected. As the body heals, scar tissue can naturally form. This can make the area feel tight or stiff and may temporarily limit range of motion during the healing process. If part of a muscle is removed, this can lead to weakness or reduced flexibility.
Additionally, radiation therapy may cause stiffness or tightness in the treated area over time. Some medications used in the management of desmoid tumors can also cause side effects such as fatigue (extreme tiredness), which can make movement harder.
If you notice changes in how your body moves and feels, your doctor will want to understand what’s causing them. Start by explaining your challenges — where you feel stiffness, pain, or weakness, and how these issues affect your daily life. Explain when the problem started and whether it’s getting better or worse.
A physical exam is often the next step. Your provider may want to look at how you walk or bend. They may gently test your range of motion to see which movements are limited or painful.
Imaging tests are also important. MRI scans are commonly used for desmoid tumors because they can show soft tissues like muscles and tendons in detail. These images help doctors see whether tumor growth, scar tissue, or swelling could be contributing to movement problems.
Treating mobility challenges related to desmoid tumors may require a combined approach. The goal is to reduce pain, protect movement, and help you remain active in your daily life. Physical therapy is one of the most important tools, especially if your tumor affects a limb. Studies show that guided physical therapy exercises can improve flexibility, strength, and joint motion over time.
Pain management is also key. Keeping pain controlled makes it easier to move and stay consistent with exercises. Your doctor may suggest medications, activity changes, or other supportive care options.
In some cases, treating the tumor itself can improve movement.
If movement gets worse or new pain appears, follow up with your healthcare team. Changes in symptoms may signal tumor growth or be a sign that you need to adjust your treatment plan.
If changes in your range of motion are affecting your daily life, it’s important to let your healthcare provider know. Your doctor can help you understand what’s happening and explore options that fit your needs and goals. Every desmoid tumor is different, and your care plan should be, too. It’s important to see a sarcoma (soft tissue tumor) specialist with experience treating desmoid tumors.
By sharing your symptoms and concerns, you and your care team can make informed decisions together. With the right support and follow-up, many people find effective ways to protect movement, manage symptoms, and move toward healing with confidence and hope.
On MyDesmoidTumorTeam, people share their experiences with desmoid tumor, get advice, and find support from others who understand.
How has your desmoid tumor affected your movement and mobility? Let others know in the comments below.
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