Facts about Chronic Pain Disease

November 13th, 2017

Chronic Pain, Patients, Resources

Chronic pain is described as “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, and lasts beyond the normal time for healing.”

The Canadian Pain Society (“CPS”) together with the International Association for the Study of Pain (“IASP”) indicate that between 5 – 8% (2.2 in 44) of Canadian children suffer with chronic and recurrent pain. It is now considered a disease on its own and deserves the attention commiserate of the magnitude of problem it presents.

ILC has developed a long term strategic action plan that incorporates three pillars of support for families dealing with chronic pain:

  • Awareness & Education Peer-to-Peer Support Network
  • One-on-One Support Network to help families navigate the health care system and gain access to community based support
  • Research & Annual Conference: Difficult to Diagnose Disease Program CME accredited partnerships with medical specialists

Including the long term goal of a Center of Excellence and 21-Day+ Rehabilitation Program for adolescents & young adults.

Acute pain follows injury to the body and generally disappears when the bodily injury heals. It is often, but not always, associated with objective physical signs of autonomic nervous system activity. Chronic pain, in contrast to acute pain, rarely is accompanied by signs of sympathetic nervous system arousal. The lack of objective signs may prompt the inexperienced clinician to say the patient does not “look” like he or she is in pain. (American Pain Society, 1999, p. 4).

Chronic pain can be differentiated from acute pain in that acute pain signals a specific nociceptive event and is self-limited. Chronic pain may begin as acute pain, but it continues beyond the normal time expected for resolution of the problem or persists or recurs for other reasons.

Chronic pain in children is the result of a dynamic integration of biological processes, psychological factors, and sociocultural context considered within a developmental trajectory. This category of pain includes persistent (ongoing) and recurrent (episodic) pain with possible fluctuations in severity, quality, regularity, and predictability. Chronic pain can occur in single or multiple body regions and can involve single or multiple organ systems. Ongoing nociception can result in a sensitization of the peripheral and central nervous systems to produce neuroanatomical, neurochemical, and neurophysiological changes. It is important that assessment and treatment strategies be based on this definition and related dimensions.

To evaluate and treat chronic childhood pain efficiently and effectively, the mind-body dualism must be abandoned. It is meaningless to dichotomize chronic pain as organic versus nonorganic because all pain is associated with, at minimum, neurosensory changes. Maintaining this dichotomy is harmful because such faulty thinking leads to over-medicalization (inappropriate investigations, procedures, and interventions) or insufficient acknowledgment of the child’s multidimensional experience and underlying neurophysiology.

The International Association for the Study of Pain (IASP) characterized chronic pain as less than 1 month, 1 to 6 months, and greater than 6 months (Task Force on Taxonomy, 1994). Formerly chronic pain was defined as having pain for longer than 6 months. It is now recognized that key elements of chronic pain can be evident much earlier. Definitions also are influenced by developmental factors. For example, recurrent migraine headache that lasts 1 hour in a 4-year-old is typical, whereas headache of this length in adolescents would not likely be classified as a migraine.

Chronic pain may include varying amounts of disability, from none to severe, and may be independent of the amount of tissue damage and perceived severity (Melzack & Wall, 1965). Biological, psychological, social, cultural, and developmental factors can impact pain-related functioning.


Crohns, Colitis & IBS

Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome

The ILC Foundation began because of the gaps in awareness and care for EDS.  Through our Board of Trustees, we are aligned with the Ehlers-Danlos Syndrome National Foundation (www.ednf.org) in the United States, where a broad understanding is shared through collaborations including ILC’s Difficult to Diagnose Disease Program for the development of best practices for the diagnosis, treatment and care of EDS for children and adults.

Through our Medical Advisory Board and the data outcomes of our pilot awareness & education peer support program we learned:

  • Pain experts struggle to meet the needs of chronic pain in the 2.2 in 44 children and youth and 1 in 5 adults.
  • Chronic pain disease can be hereditary.
  • Best practices do not exist for a broad group of chronic pain diseases.
  • Misdiagnosis of Fibromyalgia, Chronic Regional Pain Syndrome (CRPS), Somatoform Disorder, Eating Disorders are common in EDS.

Commentary by Michael F. Murray with some of the work supported by the Canadian Freudmann Family Ehlers-Danlos Syndrome Translational Research Fund (PDF)

Resources in Canada:

Many EDS groups have joined to form organizations of their own as a support.

Finding the right group for you is important:

Tethered Cord Syndrome

Tethered Cord Syndrome

Finding the right group for you is important:



Dysautonomia & Postural Orthostatic Tachycardia Syndrome (POTS)

Marfan Syndrome

Fibromyalgia & Chronic Fatigue Syndrome

Fibromyalgia & Chronic Fatigue Syndrome

Finding the right group for you is important:




Multiple Sclerosis

Multiple Sclerosis

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Complex Regional Pain Syndrome (CRPS)

Reflex Sympathetic Dystrophy

Chiari Malformation



Mast Cell Activation Syndrome

  • Announcements

    ILC Centre of Excellence – Toronto Stay Tuned

    ILC Support and Accessibilities Centre specializing in EDS and related conditions that cause altered physical abilities – Stay Tuned

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      June 10, 2018 @ 11:00 am - 2:00 pm
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      September 4, 2018
    3. ILC 6th Annual Ehlers Danlos & Chronic Pain Conference

      November 2, 2018 - November 3, 2018
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