Persistent pain just isn’t sexy.
For one thing just ask patients with the problem.
If you have almost any other medical condition the sympathy and support around you is more often than not long lasting and uncompromising.
I see a substantial number of persistent pain patients and there is a very common feature among almost all of them and that is the breakdown of their domestic and social support systems.
It appears that when it comes to persistent pain, many of those we love and befriend have limited patience and understanding. In that sense you are probably better off having diabetes or something similar.
I have observed that this is even a problem in cases of severe injury, so imagine if you are one of the poor sods who has very little on your scans to ‘justify’ your pain.
This support system breakdown feeds into pain persistence and amplification because it creates more psychosocial distress and a feeling of having to justify oneself. This results in more desperate attempts to seek pain ‘cures’, more surgery etc and … more pain.
I can provide so many examples but the two that come foremost to mind are recent cases. One case is of a worker who suffered a simple lifting injury as a regular 27 year old resulting in the usual management and surgery merry-go-round. Cutting a VERY long story short he became an opiate addict and died because of an opiate related complication in his early 50s. No one notified his case managers of this person’s death until I discovered it in a chat with his GP many months later. Now that may not sound unusual but usually when workers die as a complication of their injuries / management problems there are entitlements to the family which are pursued. The GP confirmed that this poor fellow died alone without family or friends. As a result of a simple lifting injury in his 20s. Shame he didn’t hurt his back playing footy or cricket instead.
The second example is that of a young patient who I saw just yesterday. A fit looking and intelligent fellow in his 30s who has had several work related back pain episodes and 3 back surgeries which were structurally successful and performed by eminent surgeons, yet his pain is severe, persistent and resistant to medication etc. He had overt pain sensitisation features and I strongly suspect his pain was not reliably generated from a structural target amenable to being ‘fixed’ from an early stage in his pathway. His eyes welled up with deserved tears as he advised me that his partner and soon to be born child were in the process of leaving him as a result of his pain and pain related disability.
But enough of sad patient stories. Pain is not particularly popular in other ways as well.
The epidemiology (population health statistics) of chronic pain and especially spine pain is simply staggering and seems to be a peculiarly more prevalent problem in Western Societies. In terms of cost to our community the figures are scary. It seems that only those making money in this field are consistently benefiting, and benefiting substantially*. The overwhelming focus is on expensive programs, pharmaceuticals and interventions. The outcomes are no better statistically than what would be expected from a weak placebo construct effect; overall we are not really making any meaningful progress as from what I can gather only the rate of increase in numbers of persistent pain cases has slowed, not the trend itself. As mentioned so many times on this site the very basic and relatively inexpensive measure of optimising pain literacy in patients and practitioners alike is nowhere near a high enough priority. This has to include the confronting recognition of the fundamental flaws of the management model that has been accepted for too long, or it is essentially useless. That is something that too few are prepared to do.
As yet, media attention to chronic pain is not high. In recent times media attention has been increasingly directed at the health system with respect to ineffective management and similar, but the progression to chronic pain outcomes has not really been explored to any meaningful extent. Quite the contrary, all the popular media attention that I have seen in recent times in chronic pain seems to be towards the next touted ‘miracle cure’.
The interests of various stakeholders including influential expert health practitioners seems to predominate the concerns of those in influence.
Now imagine if persistent pain was an influenza epidemic or, for the sake of more dramatic effect suiting my blog – EBOLA! And it affected over 20% of the community (as it does)!
I’m confident a task force would be created and every basic measure would be taken care of meticulously. Ineffective management would soon be exposed and ceased. And the only stakeholders considered as priorities for attention would be the patient and the exposed community. That would be a real perceived crisis and imagine the media attention!
Ok, I hear you saying that I am being ridiculous – chronic pain doesn’t cause such dramatic demise and kill like these illnesses. And I agree on that point. However, I am confident in my proposal that the health, social and economic effects of chronic pain are substantial and from the statistics most recently available, including a Lancet study**, at least comparable in many ways.
Finally, and perhaps most frustratingly for me at present, is that persistent pain patients themselves, and pain discussions beyond simplistic structural terms, are simply not popular among my colleagues. I quite definitely detect an ‘eyes glazing over’ moment in most discussions. My ego tells me that it is not because of the way I deliver the message (it probably is, but don’t tell my ego!), but there is no doubt that the patience for this discussion which now so fascinates me, is limited.
Examples and points of interest:
- I am VERY keen that the ‘language’ when describing pain in discussions on patients needs to be accurate. I think this is a basic measure of vital importance in the pursuit of proper pain literacy and better outcomes. At a recent professional review group meeting (Continuing Medical Education activity) with about 8 experienced sports med physicians, I was summarily derided by one who stated something along the lines of “Kal, we always wonder how long it will be until you bring up NOCICEPTION again!”
- It is important to contrast this with the enthusiasm at such meetings with which any new potential pharmacy and interventional treatments are received no matter how bizarre and thinly evidenced. That is of course until later on when the wave of enthusiasm is heading back out to sea and then we start to criticise those who are persisting in profiting from these products eg: ‘regenerative’ injection treatments, that seem to provide similar disappointing rates of success comparable to other modalities and … placebo.
- It is also worth contrasting with how much of these and other meetings are occupied with discussion of the management of structural findings in patients with pain. I think there is no need to elaborate on this point.
- Just mention chronic pain patients to most doctors and if you are really attentive you will notice either a ‘sigh’, a ‘rolling of the eyes’ or ‘shrug of the shoulder’ despondence. You will certainly detect a reluctance to engage meaningfully as it is just too taxing and difficult. Mind you that is most often after the ‘dartboard’ method of management has taken place for some time. That is fun until you get to the point where nothing is working and then many just want these patients to leave their offices as soon as possible. Perhaps that is why so many are given another prescription, another investigation request form or a referral to someone else who is rolling their eyes as well …
- NB MY EMBARRASSED CONFESSION: To be completely honest up until recent times, I too stood guilty as charged:
Just ask my wife. Like my sports medicine colleagues my interest was in treating structural flaws. I would come home frustrated after many sessions at which the usual procession of persistent pain patients with widespread problems that didn’t ‘fit the mould’ would parade through my door one after the other. I would state repeatedly to my wife – “there must be a full moon out tonight”. I am now too embarrassed to explain that comment if you don’t actually get was I was inferring.
Because my own pain literacy was woefully inadequate, I similarly considered such judgmental, derogatory and unhelpful terminology such as “abnormal illness behaviour”, “functional overlay”, “non-organic pain”, “secondary gain” etc…
It wasn’t my treatment that was the problem, as like others I interpreted my successes as a vindication of my skills (see blog 4). It was my patients’ faults for not responding the way they should!
Having made this confession, I can direct you again to my very patient, wonderful wife and much loved partner of 28 years (who is also my blog editor!) who will no doubt attest to my more recent unqualified enthusiasm with my work. These days I am still managing injuries with sports and exercise medicine knowledge when appropriate (and also more holistically). I see even more of the usual sad parade of persistent pain patients. However, I am managing them with a much better understanding of what is going on and what has brought these people to this point. My pain literacy, empowerment and ‘normalisation’ program is embryonic but producing very encouraging, and occasionally startling results; most importantly, with no harms attached.
Having achieved a level of better pain literacy for myself has been liberating.
Viewing these unfortunate patients now with different eyes is nothing short of fascinating.
Drawing the connections with them is a challenging and confronting process, and is far from easy. It has been substantially more professionally rewarding than my “full moon” period.
In the current phase of my career, in my clinical practice, and including my attempts to spread the word educationally, I can wholeheartedly state that ‘PAIN IS NO LONGER … A PAIN!!’.
* Pain Medicine Versus Pain Management: Ethical Dilemmas Created by Contemporary Medicine and Business. Loeser and Cahana. Clin J Pain 2013;29:311–316. Synopsis available via: http://www.therehabcenter.com/documents/SpringSpecialEdition_001.pdf
** Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990–2013: a systematic analysis for the Global Burden of Disease Study 2013. www.thelancet.com Published online June 8, 2015 and available via: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4561509/