Pain Management in Neuromuscular Conditions

Written by Stephanie Schrader – Senior Occupational Therapist
Muscular Dystrophy Queensland

Pain is a common experience for people living with neuromuscular conditions and can arise from a range of causes including muscle weakness, joint changes, fatigue and reduced mobility. Understanding the type and source of pain is an important first step in identifying the most effective management strategies.

Assessment by a physiotherapist can help identify the underlying cause of pain and guide tailored interventions. Management may include psychological therapy, lifestyle adjustments, physiotherapy and medication where appropriate. A multidisciplinary approach can help improve comfort, support function and enhance overall quality of life.

Definition

Pain is defined by the IASP as:
“An unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage. Pain is an important mechanism as it serves to send signals from the body to the brain to protect you from danger or further injury.”

Pain in NMC can be caused by:

• Weak muscles and over-reliance on compensatory muscles
• Dysfunction of the nerves, resulting in misfiring of signals

Pain is multifactorial and may arise from pathology or disease of the nerve, muscle, or musculoskeletal system. NMCs can affect the entire motor unit, which can impact the muscles and part of the nervous system.

Contributing Factors

Pain in neuromuscular conditions can arise from a range of physical, environmental, psychological, lifestyle, or cognitive factors. Understanding these can help guide prevention and management strategies:

• Prolonged postures: Remaining in one position for extended periods can strain muscles, joints and nerves, increasing discomfort.
• Limited physical activity: Lack of movement can weaken muscles, reduce joint flexibility and exacerbate stiffness and pain.
• Immobility: Being unable to move freely can lead to pressure on specific body parts, causing discomfort and increasing the risk of pressure injuries.
• Poor positioning/posture: Incorrect positioning in bed, chairs or wheelchairs can place extra stress on muscles and joints, leading to chronic pain.
• Strenuous activity: Overexertion or repetitive movements can strain weakened muscles and joints, triggering pain episodes.
• Poorly fitting orthoses: Orthotic devices that do not fit correctly can cause pressure points, irritation or misalignment, increasing discomfort.
• Weight: Excess body weight can put additional strain on muscles and joints, worsening pain and fatigue.
• Nutrition/vitamin deficiency: Poor nutrition or deficiencies (e.g., vitamin D, calcium) can impact muscle and bone health, contributing to pain and fatigue.
• Joint deformity/contractures: Abnormal joint shapes or tightened muscles limit movement and can cause persistent discomfort.
• Spinal deformity (e.g., scoliosis): Curvature of the spine can alter posture, place uneven pressure on muscles and nerves, and lead to pain.
• Pressure injuries: Areas of skin and underlying tissue under prolonged pressure (common in wheelchair users) can be painful and increase discomfort.

Pathophysiology

The pain pathway consists of the following stages:

1. Pain receptors (nociceptors) detect harmful stimuli, such as heat, chemical, or mechanical pressure in the skin or tissues of the body
2. These receptors send electrical signals along to the peripheral nerves towards the central nervous system
3. The message travels towards the spinal cord to the thalamus (relay center)
4. The message is then sent to the cerebral cortex where the sensation of pain is then perceived
5. A reflex action is performed to protect the body from further injury

Acute, Episodic, and Chronic Pain

• Acute pain: Usually happens because of injury, disease, or inflammation. This usually starts and ends when treatment occurs. When the pain does not go away it becomes chronic. Pain may be felt at the site of injury or may be referred. Perception of pain in a location separate from its actual source, caused by nerve signals from damaged areas travelling on the same spinal pathways.
• Episodic pain: Occurs from time to time and can be irregular. It can seem to arise from nowhere or may be caused by triggers that are known
• Chronic pain: Long-term or occurring for more than 3 months, can be disproportionate to the original injury. The central nervous system amplifies pain. People experience normal or sub-threshold pain signals as extreme pain (central sensitization)

Types of Pain

• Nociceptive pain: Pain is usually a result of tissue damage or inflammation activating pain receptors. The pain can be somatic (muscles, joints, skin, or bones) or visceral (internal organs)
• Neuropathic pain: Pain related to nerve damage because of an injury/disease. Often described as electric shocks, tingling, burning, and shooting
• Oncoplastic pain: Pain with no known cause and in the absence of tissue damage, inflammation, or disease

Evidence-Based Interventions for Chronic Pain

Managing chronic pain in neuromuscular conditions requires a holistic approach tailored to each individual. Effective interventions address both physical and psychological aspects of pain, helping improve function, mood, and overall quality of life. Common evidence-based strategies include:

• 🧠 Psychological therapy: Cognitive Behavior Therapy (CBT) and Acceptance and Commitment Therapy (ACT) help individuals manage emotional responses and reframe unhelpful thoughts about pain
• 🥗 Lifestyle changes: Balanced diet, improved sleep, regular pacing of activity, and stress reduction
• 🏃 Physiotherapy/physical therapy: Gentle, tailored exercise programs, stretching, and use of assistive devices like TENS machines
• 💊 Medication: Used to manage inflammation, nerve-related pain, and mood disturbances under medical supervision

Pharmacological Interventions

Medications commonly used to manage pain in neuromuscular conditions are prescribed in conjunction with your GP and medical specialists. These treatments are most effective when combined with other interventions such as physical therapy and psychological support.

💊 Non-Opioid Pain Relievers

Examples: Paracetamol, NSAIDs (ibuprofen, naproxen)

• Reduce inflammation and mild to moderate pain, such as joint or muscle discomfort
• Often first line for day to day discomfort but should be used cautiously long term

⚡ Opioid Medications

Examples: Morphine, oxycodone, fentanyl, tramadol

• Act on the brain and spinal cord to reduce moderate to severe pain
• Reserved for acute or post surgical pain under close supervision due to potential risks

🧩 Adjuvant (Helper) Medications

• Anticonvulsants: Gabapentin, pregabalin (for neuropathic pain)
• Antidepressants: Amitriptyline, duloxetine (to improve sleep and mood)

🩹 Topical or Local Treatments

Examples: Lidocaine patches, capsaicin cream, local anaesthetic injections

• Provide targeted relief for localised pain without systemic effects

🔬 Emerging and Research-Based Therapies

• Biological pain pathway blockers
• Nanoparticle drug delivery systems
• Cannabinoid therapies (currently experimental)

Muscular Dystrophy and Pain

Research shows that people with muscular dystrophy frequently experience pain, particularly in the lower back, shoulders, and legs. Common descriptions include tugging, cramping, dull, tiring, radiating, and burning sensations. These symptoms are often moderate to severe and may fluctuate throughout the day.

The intensity and characteristics of pain can vary between individuals and across different neuromuscular conditions, reflecting the complex involvement of both muscles and nerves.

Charcot-Marie-Tooth (CMT) and Pain

Charcot-Marie-Tooth (CMT) affects both motor and sensory nerves. Pain can be a significant symptom, with around 18–30% of individuals reporting neuropathic pain or paraesthesia.

Evidence-based treatments may include tricyclic antidepressants, SSRIs, anticonvulsants such as pregabalin, gabapentin, and carbamazepine, as well as topical capsaicin. The use of opioids is generally discouraged.

Pain associated with CMT is often mild to moderate but may worsen when musculoskeletal deformities develop, such as scoliosis, kyphosis, or lordosis. These changes can place additional strain on joints, compress nerves, and increase muscle fatigue.

Successful pain management in NMCs relies on multidisciplinary, individualised care that addresses both body and mind. Combining physical rehabilitation, psychological therapy, and medical management promotes resilience and enhances quality of life.

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