What is chronic pain?

Chronic pain Hypermobility

by Jeannie di Bon, June 24th, 2024

Estimated reading time: 7 minutes

In the US chronic pain affects at least 20% with some estimates of up to 40% of the population. In the UK, one study estimates a pooled chronic pain prevalence rate of up to 43.5% (2). In fact, The World Health Organization recognizes chronic pain as one of the most prevalent diseases in the world with substantial disability and cost (3)

Chronic pain is one of the most frequent issues faced by people with EDS including hEDS/HSD. It is included in the diagnostic criteria for hEDS (4).

My pain experiences started when I was twelve years old with shoulder and low back pain.  Chronic knee pain stopped my competitive running as a teenager. At the time, like many people, we were told it is growing pains, but now with a greater understanding of hypermobility, it makes sense.

I now see many young people in my clinic with similar stories to mine. All have an EDS or HSD diagnosis and have found chronic pain has begun to really interfere with their daily lives.  Despite what we may be told, you are never too young to start experiencing chronic pain when you have a condition like EDS or HSD.

I became interested in chronic pain soon after my initial Pilates training in 2007. I undertook a comprehensive course to become a Low Back Pain practitioner and was first introduced to the concept of the biopsychosocial model back then. Since then, I have worked with all types of chronic pain, learning more about neuroscience and how it has evolved over the decades. The types of pain are explored in the next section.

Exploring the types of pain

Nociceptive pain

This is caused by “Issues in the tissues”. It is a response to stimuli (actual or potential) causing damage. This is the most common form of chronic pain. Some examples of this include arthritis, burns, muscle tears, muscle spasms, and visceral pathology like ulcers or kidney stones (2). This often acute and localized. Examples in EDS include things like dislocations and overstretching or tearing of ligaments and tendons (4).

Neuropathic pain

This is another type of issue with the tissues, and is a result of disease or injury of the nerves or nervous system. This can be from things like nerve or nerve root compressions, inflammatory diseases, chemotherapy, trauma, and more. This type of pain is often described as shooting, stabbing and electrical (2)

Nociplastic pain

This type of pain is more of an issue with the processing of pain signals without evidence of tissue damage or pathology. It is associated with conditions such as central sensitization, chronic immune system activation, the response to psychosocial stressors and more. Examples include fibromyalgia, irittable bowel syndrome and non specific back pain (2)

A person can have any combination of these types of pain. In EDS/HSD there are multiple reasons we can experience each type of pain (4). For more on these types of pain check out our guest blog series by The Zebra Club Scientific advisor Leslie Russek. She delves into the 3 types of pain and how we can address them.

Central sensitization and nociplastic pain

Neuroscience research has led to the concept of central sensitization. It has been defined as an “amplification of neural signaling within the central nervous system that elicits a pain hypersensitivity (3)”. While central sensitization is not included in the IASP definition of nociplastic pain, it is proposed to be the underlying mechanism (5). Dr. Leslie Russek describes it as the pain dial – like a volume control – being turned up.

Central sensitization is linked to a variety of alterations in activities of the central nervous system, including altered sensory processing in the brain to increased activity in the brain in areas that are involved in pain sensation (5). At the cellular level, there are actual differences in the protein expression in pain-signaling neurons and nonneuronal cells like immune cells and astrocytes (a type of cell in the central nervous system) (4).

Altogether this can result in an increased response to a variety of sensory inputs from tactile stimuli to non-musculoskeletal stimuli like sound, light, cold, stress, heat, and electricity (5). It is proposed that “when this happens, pain outlives its usefulness as a warning system and becomes chronic and debilitating (4).

Central sensitization is found in a large number of chronic pain conditions like fibromyalgia, osteoarthritis, irritable bowel syndrome, low back pain, rheumatoid arthritis, and pain following cancer(5).

It is recognized that in the context of EDS, pain can gradually become more widespread and chronic. A few studies have linked this “chronification of generalized pain” in people with joint hypermobility syndrome or hEDS with central sensitization (4, 6, 7).

For more tips on managing nociplastic pain check out this blog post by Dr. Russek.

The Biopsychosocial Model of pain

The biopsychosocial model of pain suggests that psychosocial facts play an important role in the persistence and shaping of chronic pain conditions. It is a framework that understands health and illness through the complex interactions of biological, psychological, and social factors. It serves as a holistic approach to healthcare. It is a step forward from the old biomedical model that much of healthcare is based on.

  • Biological factors could include genetic predispositions like EDS, immune function, and hormonal balance.
  • Psychological factors include emotions and mood, behavioral patterns, cognitive processes, and our mental health. We may develop avoidant behaviors, anxiety, and adopt poor pain management strategies which have been shown to be related to chronic pain (8).
  • Social factors relate to cultural influences and beliefs, social support of family and friends, and socioeconomic status like access to medical care and education.

Mindfulness and chronic pain

Research states that psychological factors associated with chronic pain may be predictive of pain persistence and disability (9). This does not mean that the pain is in your head, but we do know the psychological aspect of pain is important.

A recent systematic review and meta-analysis of recent research by Paschali et al (2023) found that mind-body interventions like mindfulness, mindfulness-based stress reduction and meditations appeared to be beneficial in reducing pain intensity.

Research suggests that mind-body interventions can be effective in reducing pain.

In my Integral Movement Method approach, which has been informed by science, it was important that I focused on calming the nervous system before attempting to introduce exercise. The first two principles of the IMM are Breath and Relaxation which help calm, reduce anxiety, and release muscular tension.

Managing chronic pain

Chronic pain is multidimensional. Non-pharmacological treatments have recently been recommended as the first choice of treatment for chronic pain, as opposed to surgery or opioids (10). The NICE guidelines now recommend exercise and psychological therapies over pain medications.

Both NSAIDS and opioids have been shown to have only a small effect in reducing pain intensity in the short term. Long-term use can result in adverse effects like hyperalgesia (11).

The use of pain neuroscience education has been proven through research to be beneficial in the management of chronic pain. This approach relates to both the biological and psychological processes involved in pain experiences, and it attempts to help patients reconsider their beliefs about pain and the tissue-damage relationship (12).  The message that hurt does not equal harm is a large part of pain education.

Pain neuroscience education combined with exercise therapy was shown to be the most superior form of intervention. It makes sense that we need to move our bodies safely with a greater understanding of the science behind our pain.

Other management strategies could include:

  • Physical therapy with exercise programs
  • Treatments from medical providers like steroid injections may give some relief
  • Cognitive Behavourial Therapy or CBT is one type of therapy that helps patients develop coping strategies and change negative thought patterns. Seeking professional support for anxiety and depression which are commonly experienced in hEDS/HSD – these may increase pain (4).
  • Mindfulness and Relaxation techniques. We have a whole collection of meditations in The Zebra Club and a variety of gentle, relaxing classes designed to calm the nervous system.
  • Biofeedback teaches patients to control physiological processes such as heart rate and muscle tension to reduce pain.
  • Support groups can help provide emotional support and a sense of community.
  • Occupational Therapy can be really useful to improve daily activities. Check out my interview with Jo Southall, OT.
  • Diet and nutrition focused on anti-inflammatory foods may be helpful. Check my blog and video with Lorna Ryan about the EDS Diet.
  • Establishing a regular sleep schedule that creates a restful environment can be helpful.
  • Acupuncture, a traditional Chinese medicine, may help with pain conditions.

These are just some examples. Chronic pain is a huge topic and effective pain management may require a combination of different approaches, ideally personalized to the individual’s needs and circumstances.

In this video, I discuss tools for chronic pain management with an expert patient and The Zebra Club ambassador Bethany.


What does chronic pain feel like?

There is a wide range of feelings associated with chronic pain, and these can vary based on the type of pain experienced. Neuropathic pain involving the nerves is associated with descriptors such as shooting, stabbing, or electrical like. Nociceptive pain is often described as throbbing, aching, and pressure-like. Nociplastic pain is associated with descriptions like gnawing, aching, and sharp (2)

What happens to your body when you have chronic pain?

With persistent pain, your body undergoes various physiological, psychological, and social changes.  These changes can impact different body systems and functions.   For example, we may experience changes in the nervous system leading to central sensitization, which amplifies pain signals and increases pain intensity.   Neurochemical imbalances can occur as chronic pain affects levels of neurotransmitters like serotonin and norepinephrine which can impact mood and pain regulation.

Our musculoskeletal system may experience muscle tension and spasms. Due to pain, we may move less, increasing disability.

The Immune system may experience inflammation and response alternations.

Psychological changes could lead to depression and anxiety – understandable when you have long-term pain.  Sleep may be impaired too.

Can chronic pain make you ill?

Yes, it can as it affects various aspects of physical and mental health. Some examples of how chronic pain can make you sick include immune system suppression, cardiovascular problems like increased heart rate, digestive issues, and musculoskeletal issues.  Mental health may be impacted long term including chronic stress.


Literature Review and Research by Catherine Nation MSc, PhD

Works Cited 

  1. https://www.iasp-pain.org/advocacy/definitions-of-chronic-pain-syndromes/
  2. Cohen et al. (2021) Chronic pain: an update on burden, best practices, and new advances. Lancet.
  3. Nijs et al. (2021) Central sensitisation in chronic pain conditions: latest discoveries and their potential for precision medicine. Lancet Rheumatology.
  4. Malfait et al. (2021) Pain in the Ehlers–Danlos syndromes: Mechanisms, models,and challenges. American Journal of Medical Genetics.
  5. Nijs et a.l (2021) Nociplastic Pain Criteria or Recognition of Central Sensitization? Pain Phenotyping in the Past, Present and Future. Journal of Clinical Medicine.
  6. Leone et al. (2020) Pain due to Ehlers-Danlos Syndrome Is Associated with Deficit of the Endogenous Pain Inhibitory Control. Pain Medicine.
  7. De Wandele et al. (2022). Exploring the pain mechanisms in hypermobile Ehlers-Danlos syndrome: a case-control study. European Journal of Pain Medicine.
  8. Paschali, M. et al. (2023) Mindfulness-based Interventions for Chronic Low Back Pain. Clinical Journal of Pain.
  9. Petrucci, G. et al. (2021) Psychological Approaches for the Integrative Care of Chronic Low Back Pain: A Systematic Review and Metanalysis. International Journal of Environmental Research and Public Health.
  10. George, S. Z. et al.(2021) Interventions for the Management of Acute and Chronic Low Back Pain: Revision 2021: Clinical Practice Guidelines Linked to the International Classification of Functioning, Disability and Health From the Academy of Orthopaedic Physical Therapy of the American Physical Therapy Association.  Journal of Orthopaedic & Sports Physical Therapy
  11. Ma et al. (2023) A systematic review and meta-analysis of pain neuroscience education for chronic low back pain: short-term outcomes of pain and disability.Physiotherapy Theory and Practice
  12. Bonatesta, L et al. (2022) Pain Science Education Plus Exercise Therapy in Chronic Nonspecific Spinal Pain: A Systematic Review and Meta-analyses of Randomized Clinical Trials. Journal of Pain.


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