Pain Management in Duchenne Muscular Dystrophy

Pain is one of the most under-discussed parts of life with Duchenne muscular dystrophy. The disease is usually described in terms of weakness, mobility, and respiratory and cardiac decline, but the day-to-day experience often includes pain that is real, persistent, and treatable. Recognizing it is the first step.

This post is a practical overview. The actual treatment plan belongs to the care team.

How common is pain in DMD

Studies consistently report that the majority of people with DMD experience chronic pain. A 2023 study in Developmental Medicine and Child Neurology found that more than 60 percent of patients with DMD had chronic pain across pediatric and adult populations, with measurable impact on psychological distress and quality of life. (Chronic pain, psychological distress, and quality of life in males with DMD, Huang et al, DMCN 2023)

The legs, lower back, hips, and shoulders are the most frequently affected regions. Pain is rarely confined to a single area.

Why pain is under-recognized

Several factors keep pain off the agenda at clinic visits. Children with DMD often normalize discomfort because it has been present for years. Adolescents may not mention pain to parents in front of clinicians. Families may worry that mentioning pain will distract from other priorities. And the care team itself may focus on the visible decline of strength and miss the invisible cost of pain.

A clinician who does not ask, and a patient who does not mention, can together produce months or years of untreated pain.

What pain in DMD typically looks like

Common patterns include:

• Muscle and joint pain from contractures, abnormal posture, and reduced movement.
• Lower back pain related to seating, pelvic obliquity, and scoliosis.
• Shoulder and arm pain as upper extremity function changes.
• Skin and pressure pain from prolonged sitting, transfers, or equipment fit.
• Headaches and morning fatigue that can signal nocturnal hypoventilation.
• Procedure-related pain from injections, blood draws, and operations.

Each of these has different management implications. Lumping them together as “DMD pain” is rarely useful clinically.

A multidisciplinary approach

Parent Project Muscular Dystrophy frames pain management as a multidisciplinary issue, integrated with the rest of DMD care rather than handled separately. (PPMD, Pain)

The toolkit typically includes:

• Physical therapy and stretching to reduce contracture-driven pain.
• Wheelchair seating optimization to reduce postural pain.
• Splinting and night orthoses where appropriate.
• Heat, massage, and gentle mobilization.
• Non-opioid medications such as paracetamol and selected non-steroidal anti-inflammatories, used with care because of cardiac and renal considerations.
• Neuropathic agents in selected cases.
• Procedural pain protocols, including topical anesthetics and child-life support.
• Psychological support, including cognitive behavioral techniques and family therapy.

For background, see physical therapy in DMD, choosing a wheelchair in DMD, and mental health in DMD.

Medications, with caution

Opioid analgesics are sometimes appropriate in DMD, especially around surgery or for severe acute pain, but they carry specific risks. Reduced respiratory reserve makes patients more sensitive to respiratory depression. Constipation is already common in DMD and can be worsened by opioids. These are reasons for caution, not exclusion.

Non-steroidal anti-inflammatories should be used cautiously in patients on corticosteroids, with attention to gastrointestinal and renal risk. The care team usually weighs these factors individually.

The reasonable framing is that medications are one part of pain management, not the whole strategy.

The psychological piece

Chronic pain and mood are linked, in both directions. A 2026 study identified both physical function and psychological distress as independent predictors of chronic pain outcomes in young people with DMD. (Psychological and functional predictors of chronic pain in youth with DMD, PMC)

This is a reason for explicit mental health support, not a reason to dismiss pain as psychological. The two coexist and can be treated together.

For background, see mental health in DMD and caregiver burnout in DMD families.

What families can ask

A short list for clinic visits:

• Where does the patient have pain, and how often?
• What makes it better, and what makes it worse?
• Are there sleep, mood, or appetite changes alongside it?
• Is the current seating, splinting, and stretching plan helping?
• Is a referral to physiatry, pain management, or psychology appropriate?

Asking is the simplest way to move pain from invisible to addressed.

What is still uncertain

Optimal pharmacologic strategies, the role of newer disease-modifying therapies in altering pain trajectories, and best practices for pediatric chronic pain in neuromuscular disease all continue to evolve.

The reasonable framing is that pain in DMD is common, treatable, and worth raising explicitly. The decisions belong to the patient, family, and care team.

For related reading, see physical therapy in DMD, mental health in DMD, and scoliosis in DMD.

Disclaimer: This post is informational and does not constitute medical advice. Decisions about diagnosis or treatment must be made with a qualified care team.