Missing out at Christmas

I guess we can broadly and boldly say that rehabilitation professions are making some headway with pain states that are broadly categorised as ‘musculoskeletal’ – the backs, the necks, the shoulders and other bits. And recently, since an awareness of the potential of brain changes gave a green light to researchers and some ‘withit’ clinicians, there appears to be some headway into better management for neuropathic pain states such as brachial plexus tears, complex regional pain syndrome and phantom limb pain. But a massive group is still suffering, missing out – and their pains are not yet even on the radar of researchers and clinicians…

Who is missing out?
There are two main groups – those with neurological disease and trauma such as stroke and a group we can broadly identify by anatomy such as pelvic pain. Please spend a moment to review these sorry stats:

Stroke hurts in many ways – experiencing pain that interferes with daily life is one way. Pain in stroke patients is reported as high as 53% and there is an incidence of CRPS in 23% of the stroke population (Cacchio et al 2009). ‘Novel’ pain (ie., excluding those that had pain prior to the stroke) was found in 39% of stroke patients (Kilt et al 2011), suggesting essentially that stroke can cause pain. Remember that nearly 3% of the population will have a stroke.

In spinal cord injury, at least 80% experience chronic pain, many regarded as severe. Parkinsons’ disease is particularly painful – prevalence levels are reported as high as 83%, yet only 34% are on any analgesic medication. This pain is worse in females and has no association with age, or disease duration. In multiple sclerosis, pain prevalence is reported as high as 86%. Intensity ratings of 5/10 are common (Khan & Pallant 2007). Alzheimers hurts in 57%, so does Guillaine Barre (up to 89%), HIV/AIDS (up to 90%) and leprosy (50%) though the conventional wisdom is that leprosy should not hurt. See (Boorsook 2012) for a summary.

Researchers and clinicians appear to avoid certain body parts, in particular pelvic pain and also face pain. Pelvic pain in particular is hardly on the research radar. Endometriosis alone costs Australia at least 6 billion dollars per year and figures always hide the human burden. (Bush et al 2011)

What can we learn already?
I heard only last week from a physio colleague in regard to stroke treatment “we don’t worry too much about pain, we have to get them functional”. I guess if you don’t worry too much about it, then you won’t be aware of how much a feature of life it is in these groups.

But ponder – post stroke, Parkinson’s and other neurological injuries and disease once again informs us/forces us to understand how much pain is a brain construction – there is no injury to tissue structure in these problems. And in MS, the level of demyelination does not relate to the amount of pain. It’s sort of the same as in ‘musculoskeletal pain’ where the amount of arthritic change or disc pathology rarely relates to the level of pain. The only good thing is that it should be easier to provide therapeutic neuroscience education and talk about the brain in pain as there is no tissue injury.

And ponder too, how linear thinking hampers rational clinical pain engagement. Most people, including researchers think about the effect of pain on motor function as if it were linear yet the pain construction in the brain is in parallel with the motor construction, ie., the brain bits involved overlap. Pain treatment on the grounds it should help motor outcomes seems obvious. Pain is just forgotten – in MS, those with pain are more likely to be unemployed; in nearly 20% of spinal cord injured patients, pain was the factor limiting return to work, not their neurological disability.

What can we do about it?
In our very own small way, we are planning to do something. We have had our first course in neurological disease and pain last month and introduced therapies such as graded motor imagery and therapeutic neuroscience education for these once untouched neuropathic pains. There are more courses planned in Australia and later for overseas. We are well on the way in planning for pelvic pain courses under neuroimmune refreshed biopsychosocial thinking. And we will fund imagery studies on face pain, pelvic pain and therapeutic neuroscience education for stroke pain, but I think we can all start by listing awareness on groups that are missing out on the very first stage of treatment – “an understanding of why I hurt”. Tell us who you think is missing out.

See you in 2013.

And by the way, thank you so much for all your great feedback from the NOI 2012 conference. With over 600 turning up it was an affirmation that we are on the right track with our teaching.

November NOI Notes submission winner…
Last month we asked for ‘stories from the shadows’ – a story that makes us reflect the deepest on “what is going on here”. The winner’s story of a complex patient state is not able to be published, however, their entry did win them a copy of The Graded Motor Imagery Handbook. Well done Adrian from Warrnambool!

Search for and enquire about new courses here.


  1. Bermejo PE, Oreja-Guevara C, Diez-Tejedor E. Pain in multiple sclerosis: prevalence, mechanisms, types and treatment.  Rev Neurol 2010; 50:101-8.
  2. Boorsook, D. (2012). “Neurological diseases and pain.” Brain 135: 320-344.
  3. Bush P, Evans S, Vancaille, T. The $6 billion dollar woman and the $600 million dollar girl. The Pelvic pain report. http://www.fpm.anzca.edu.au/Pelvic_Pain_Report_RFS.pdf
  4. Cacchio A, D. B. E., Necozione S, di Orio F, Santilli V. (2009). “Mirror therapy for complex regional pain syndrome type 1 and stroke ” N Engl J Med 361: 634-636
  5. Khan F and Pallant J. Chronic pain in multiple sclerosis: prevalence, characteristics and impact on quality of life in an Australian community cohort.  Journal of Pain 2007: 8: 614-623.
  6. Kilt H, finnerup NB, Overvad K, Andersen G, Jensen TS. Pain following stroke: a population-based follow up study.  PLoS ONE 6(11): e27607.doi:10.1371/journal.pone.0027607

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