Types of Pain in Myalgic Encephalomyelitis (ME) – Part 2

Purpose

This document outlines the different types of pain experienced in Myalgic Encephalomyelitis (ME). It aims to improve understanding by describing how pain presents, what may trigger or worsen it, and how it differs from typical pain conditions.

Key Points

1. Neuropathic Pain

• Caused by dysfunction or damage within the nervous system rather than tissue injury.
• Common sensations include:
  • Burning, stabbing, or electric shock-like pain
  • Tingling, numbness, or crawling sensations
• May involve heightened sensitivity to touch (allodynia).
• Often affects hands and feet but can be widespread.
• Can worsen with exertion, stress, or sensory input.

2. Bone and Deep Tissue Pain

• Described as deep, aching, throbbing, or pressure-like pain.
• Often feels internal rather than superficial.
• Can occur in multiple areas such as spine, pelvis, ribs, and limbs.
• Common triggers include:
  • Physical activity (even minimal)
  • Post-exertional crashes (PENE)
  • Infections or immune reactions
• May fluctuate but can persist long-term.
• Associated with tenderness, heaviness, and fatigue.

3. Abdominal and Visceral Pain

• Originates from internal organs and is often difficult to localise.
• Common symptoms include:
  • Cramping, aching, or pressure-like discomfort
  • Bloating, gas, nausea, and digestive changes
• Can be triggered by:
  • Dietary factors
  • Gut imbalances (e.g. SIBO)
  • Stress or autonomic dysfunction
• Often worsens after meals or during illness flares.

4. Skin and Surface Pain

• Hypersensitivity where even light touch or clothing can cause pain.
• Often described as:
  • Burning or “sunburned skin” sensation
  • Tingling or electric-like discomfort
• Can be localised or widespread.
• Triggered by:
  • Clothing, bedding, or temperature changes
  • Sensory overload or exertion
• Linked to nerve sensitisation and abnormal pain processing.

5. Throat and Glandular Pain

• Includes sore throat without infection and tender lymph nodes.
• Sensations may include:
  • Rawness, tightness, or pressure
• Often occurs in the neck, underarms, or groin.
• Frequently worsened by:
  • Exertion (PENE)
  • Immune activation or stress
• Can resemble infection but is part of ME-related dysfunction.

6. Spinal, Back, and Neck Pain

• Presents as stiffness, aching, or pressure along the spine.
• May limit movement and cause difficulty with daily activities.
• Common triggers:
  • Poor posture
  • Minimal activity
  • Prolonged rest
  • Post-exertional worsening
• Can contribute to headaches, dizziness, and reduced mobility.

7. Key Features Across All Pain Types

• Pain is often:
  • Disproportionate to activity levels
  • Worsened by post-exertional neuroimmune exhaustion (PENE)
  • Chronic and fluctuating
• Multiple types of pain can occur simultaneously.
• Management generally focuses on:
  • Pacing and energy management
  • Avoiding triggers
  • Gentle movement and supportive care

Target Audience

• Individuals living with ME and their families
• Healthcare professionals and carers
• Support organisations and advocacy groups
• Anyone seeking to understand ME-related pain

Overall Outcome

This document highlights that pain in ME is complex, multi-dimensional, and often misunderstood. It reinforces that pain in ME is not typical and may involve neurological, immune, and autonomic dysfunction. Improved understanding can support better recognition, more appropriate management, and increased awareness of the challenges faced by those living with ME.