Updated: Feb 10, 2021
Doctors and patients alike are constantly battling over the issue of pain. What kind of pain is it? How long is it going to last? What kind of pain medication should be prescribed? Is employment now out of the question? Politicians and the Australian public constantly have debates over the opioid crisis, and whether welfare payments should be given to people with generalised back pain. But how is pain defined, and are we ignoring possibly one very large cohort of pain sufferers in Australia, who don't fit into any current definitions at all?
Aside from a distinct group of people who do not have the ability to feel pain at all (known as Congenital Insensitivity to Pain (CIP), or Congenital Analgesia), everyone suffers from pain from time to time. 20 percent of Australians over the age of 45 are living with chronic pain * (Australian Institute of Health and Welfare (AIHW), 2020), and chronic pain costs the Australian economy over $135 billion each and every year (AIHW, 2020). Chronic pain is a huge burden on the lives of those who have it, their loved ones, and for society in general.
The difference between acute and chronic pain is simple. Acute pain is an immediate pain from an injury - when someone stubs their toe, or breaks a bone. These events hurt as a way for the body to tell the human that something is wrong and needs fixing. Chronic pain is different, and more complicated. The medical definition of chronic pain is that it is pain that lasts longer than 3-6 months. This is because it takes the human body approximately 3-6 months to heal from injury, after which time, no more pain should be felt. The injury should be healed, and the pain should be gone. Thus, any pain after this timeline is not from the injury itself, but from something else, most usually, something that has gone wrong with the nerve receptors in our brains.
Indeed, the AIHW (2020) defines chronic pain as possibly resulting from when the nerves keep continuing to send pain signals long after an old injury or surgery should have healed, and “that it is ongoing and experienced most days of the week” (p. 1).
These are two clearly defined conditions, which differentiate between what some might call ‘actual pain’, that is, the pain from an immediate injury; and that of ‘fake pain’, or the pain felt when there is no actual injury, and the body is just confused. Medical professionals tend to look at this latter pain as actually fake, or at the very least, ‘all in the patient’s head’, and it is common for them to tell patients that they must learn to live with it, or to treat them as drug seekers (Hochman, 2012).
This obviously leads to all sorts of issues in relation to effective treatment, especially in these times when the term ‘opioid epidemic’ screams from the headlines every other week, and more and more pressure is being put on medical professionals to stop prescribing opioids of any kind (leading to the over prescription of NSAIDs among others, which is also highly dangerous). Medical professionals are less and less likely to offer analgesic medication, and more likely to offer alternative medication (such as anti-depressants), or other methods thought to help with dealing with pain such as Cognitive Behaviour Therapy (CBT), or Mindfulness exercises.
When used correctly, and when taking the patient’s individual circumstances in mind, all these alternatives can be effective at dealing with chronic pain. However, what happens when the pain may be occurring over a long period of time, but doesn’t fit into the standard definition of ‘chronic pain’?
Chopra & Tinkle, et al. (2017), distinguish between two different types of chronic pain. Nociceptive pain is pain that occurs after a tissue injury (that is, ‘chronic acute pain’); and neuropathic pain, by far the most common type of chronic pain, to the point that the terms are often indiscriminately interchanged, is pain that is generated abnormally by either the central nervous system, or the peripheral nervous system. Even a cursory glance at Google Scholar will show that the vast majority of articles and studies on pain management deal with specific issues, such as cancer or back pain, and that when chronic pain is spoken of, it is always assumed to be neuropathic pain. Abnormal pain. ‘Fake’ pain.
People with Ehlers Danlos Syndrome (EDS), don’t necessarily have chronic pain **, although most of them surely have pain that lasts longer than 3-6 months.
EDS is a connective tissue disorder, characterised by a fault in the collagen gene. Collagen is essentially the glue that holds the body together; thus, people with EDS have bodies that are slowly falling apart. People with EDS experience “progressive deterioration and degeneration of connective tissue in joints, spine, eye, gums, teeth, internal organs, and central nervous system (CNS)” (Tennant, 2017). They also experience micro-tears, in muscles, organs, and other parts of the body (Tennant, 2017). Perhaps the most known effect of EDS however, is the constant joint dislocations that occur, sometimes multiple times a day in a variety of different joints.
This type of pain experienced by people with EDS is obviously acute (or nociceptive) pain as it is caused by an immediate injury. However, since this pain occurs on a daily basis, over their lifetimes, patients are often seen by medical professionals as having general chronic pain as applies to the majority of the population, and only solutions for the neuropathic type of chronic pain are offered.
After trying to explain the difference between chronic pain, and chronic acute pain, to medical professionals, people with EDS usually continue to receive care in relation to general chronic pain. Or worse, they are seen as being uncooperative, drug seeking, attention seeking, and care ends up terminated by either party.
Mostly, this conundrum is due to a lack of research (Chopra et al, 2017). There is very little (if any) research done into how to manage chronic acute pain. Those medical professionals who do understand the situation, still tend to choose a side: they either prescribe medications alone, as one would do for acute pain; else they direct the patient to consider psychosocial alternatives such as CBT or Mindfulness.
The reality is that perhaps a plethora of techniques need to be considered. Fast acting analgesics such as opiates for the dislocation that has just occurred, and break-though pain. Slow release analgesics for the less painful, more common pain such as the micro-tears that occur. CBT and Mindfulness for any co-occurring chronic pain, and just for general good mental health if required. Occupational therapy may help in consideration to braces, special equipment, and other physical solutions to reduce the injuries and pain in the first place. Physiotherapy and hydrotherapy can help to strengthen muscles and reduce injuries. Exercise physiology can help to ensure the patient is exercising in a way that suits someone with EDS (who, due to their different needs and body structure, require different routines than the rest of the population).
EDS is a complicated condition, which requires complicated treatment. The first step however, is for medical professionals to fully appreciate that while the profession has been mostly well served by only considering two different types of pain, it is now time to introduce a third kind.
* The only statistics the Australian Government has for the rate of chronic pain in Australia, are for people aged over 45.
** People with EDS often ALSO have chronic pain, however this is in addition to their acute and chronic acute pain.
Australian Institute of Health and Welfare (2020). Chronic pain in Australia, Cat No PHE26. Retrieved August 1, 2020, from https://www.aihw.gov.au/reports/chronic-disease/chronic-pain-in-australia/contents/summary
Chopra, P., Tinkle, B., Brock, I., Gompel, A., Bulbena, A., & Francomano, C. (2017). Pain management in the Ehlers-Danlos syndromes. American Journal of Medical Genetics, Part C, 175, 212-219. Retrieved from https://www.ehlers-danlos.com/pdf/2017-FINAL-AJMG-PDFs/Chopra_et_al-2017-American_Journal_of_Medical_Genetics_Part_C-_Seminars_in_Medical_Genetics.pdf
Hochman, J. (2012). Considerations in treating intractable pain. Practical Pain Management, 5(2). Retrieved from https://www.practicalpainmanagement.com/treatments/psychological/considerations-treating-intractable-pain
Tennant, F. (2017). Ehlers-Danlos Syndrome: An emerging challenge for pain management. Practical Pain Management, 17(7). Retrieved from https://www.practicalpainmanagement.com/pain/other/ehlers-danlos-syndrome-emerging-challenge-pain-management