If you’re living with muscular dystrophy (MD) or caring for someone who is, you may wonder if the condition causes pain. While MD itself doesn’t cause pain, the progressive muscle weakness that comes with it can cause uncomfortable sensations like cramping and aching.

Pain isn’t the same experience for everyone. It can vary based on your type of muscular dystrophy, how far the condition has progressed, and other comorbidities (health complications) you may have.

Dealing with the symptoms and complications of MD can feel overwhelming. However, understanding the symptoms and what to expect can help you take steps to improve your quality of life. Here’s what you need to know about pain associated with MD and strategies for relief.

Muscle Pain May Affect People With Any Form of Muscular Dystrophy

All forms of MD cause atrophy (muscle weakness and degeneration), which worsens over time. The muscle damage is usually caused by genetic mutations (changes), such as a deficiency in the dystrophin-glycoprotein complex (proteins that protect muscle fibers). As a result, your body compensates by making muscles work harder. This may cause painful sensations like aching, cramping, or soreness, especially if the muscle is weak.

Weakened muscles also offer less support for your bones. That puts people with MD at a higher risk for conditions like scoliosis (spinal curvature), which can lead to back pain.

Remember that muscle pain and uncomfortable sensations can show up in different ways, depending on your type of muscular dystrophy.

Duchenne Muscular Dystrophy

Duchenne muscular dystrophy (DMD) is the most common type of MD. It typically appears in childhood and begins with muscle weakness in the legs and pelvis. This weakness spreads to other areas of the body, like the neck or arms. Your child may experience moderate aching or cramping as their muscles work harder to compensate, particularly after physical activity. This may cause them to:

• Experience fatigue
• Fall frequently
• Have difficulty walking or climbing stairs
• Waddle or walk on their toes

Over time, DMD can cause serious heart problems, like cardiomyopathy. This makes it difficult for your child’s heart to pump blood to the rest of their body. As it progresses, they may experience symptoms like shortness of breath or heart palpitations.

Becker Muscular Dystrophy

Becker muscular dystrophy (BMD) is another common form of MD. It causes many of the same symptoms as DMD, but they tend to be milder and progress more slowly.

Myotonic Dystrophy

Myotonic dystrophy is the most common type of MD diagnosed in adulthood. This condition makes it difficult to relax your muscles after using them. You may experience painful sensations like stiffness or cramping, most commonly in your lower back and legs.

Congenital Muscular Dystrophy

There are several types of congenital muscular dystrophy (CMD). These conditions appear at birth and cause muscle weakness and stiffness throughout the body. They can hinder your child’s movement, muscle control, and development early in life.

Facioscapulohumeral Muscular Dystrophy

Facioscapulohumeral muscular dystrophy (FSHD) mainly affects the muscles in your face and upper body. It can make movements like sipping through a straw, closing your eyes, or lifting your arms painful. FSHD may also spread to other muscle groups over time.

Other Types of MD

• Distal muscular dystrophy weakens muscles in your hands, feet, lower arms, and lower legs.
• Emery-Dreifuss muscular dystrophy (EDMD) affects your shoulders, upper arms, and shin muscles.
• Limb-girdle muscular dystrophy (LGMD) impacts muscles in your upper arms, upper legs, shoulders, and hips.
• Oculopharyngeal muscular dystrophy (OPMD) causes droopy eyelids and swallowing difficulties (dysphagia).

Contractures Can Cause Joint Pain

MD can cause joint pain, often due to contractures. Contractures occur when weakened muscles shorten and tighten. This tightness pulls on joints to restrict movement and cause discomfort. The affected joints depend on your type of MD:

• DMD and BMD cause contractures in the ankles, knees, and hips.
• EDMD causes stiffness in the elbows, neck, and heels.
• CMD can cause severe contractures in several joints, a condition called arthrogryposis.

In some cases, contractures can lead to joint deformities.

Neuropathic Pain May Appear, Too

Some forms of MD may cause neuropathy (nerve pain), though the exact reason why remains unclear. Research suggests that small fiber neuropathy can appear alongside muscle weakness in people with myotonic dystrophy. This can feel like a burning, stabbing, or tingling sensation in your hands and feet. It can also affect tiny nerve fibers that control essential body functions, like blood pressure or heart rate.

How Can You Manage MD Pain?

There are several ways to manage pain from MD. Managing any pain you experience with MD will depend on the type, location, and severity of the pain. You may need to use a combination of treatments to find relief for your or your child’s unique condition.

• Occupational and physical therapies help strengthen and stretch your muscles. They can help you maintain movement and function throughout your body.
• At-home stretches and exercises can help your muscles stay flexible and prevent contractures.
• Mobility aids, such as canes, braces, walkers, and wheelchairs can improve your movement, prevent falls, and make daily activities easier.
• Steroid medications can help slow disease progression and prevent scoliosis and related back pain.
• Medications like ACE inhibitors or beta-blockers can slow cardiomyopathy and help prevent heart failure and its symptoms.
• Surgery may help relieve muscle tension or correct scoliosis.

Living with MD can also take a toll on your mental health. You or your loved one may feel depressed, sad, or anxious. Remember that managing pain involves caring for your whole self — both in body and mind. Counseling and support groups can provide guidance to help you cope with the emotional challenges of MD.

Everyone’s experience with MD is different. Talk to your healthcare provider about the best treatment options for your condition and any pain you or your child may experience. They will create a personalized care plan for your needs, goals, and lifestyle.

Connect With Others Who Understand

On myMDteam, the social network for people with muscular dystrophy and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with muscular dystrophy.

Do you experience pain with MD? How does this discomfort affect your everyday life? What are your tips for managing it? Share your experience in the comments below or start a conversation by posting on your Activities page.