“Life is pain, highness. Anyone who tells you different is selling something.”
– Westley (Cary Elwes), in The Princess Bride
Pain is wonderfully Subjective!
If there’s one thing that chronic pain will do for you, it’ll focus your attention. While that’s usually seen as a Good Thing, it loses its lustre when you realise it’ll focus your attention whether you want it to or not, pretty much permanently. I’m lucky enough to have been able to use that tortured focus to learn about pain – objectively, as it were, instead of just experiencing it and whinging about how it’s ruined my life (which it has – as many hundreds of thousands of people around the world know far too well).
Now, I’m not saying I’m a medical specialist of any kind. Far from it – I’ve known too many medical pain specialists to want to be counted amongst their number, one or two individuals notwithstanding (Bruce Kinloch, we miss you!). Personally and professionally, based on the last twenty-three years of close interaction with these medical specialists, I can only consider most pain specialists the worst kind of medical dilletantes – who, despite their occasional declaration of compassion, have no comprehension of the second-to-second realities of chronic pain in their patients. So, despite these specialists’ best intellectual intentions, the incoherent torture of severe chronic pain is only exacerbated by calendar-driven delays of weeks or months (the apparent minimum time period defined by their Alma Maters, Colleges of Chirurgeons from the 17th Century), fiercely protected by middle-aged Personal Assistants who have more invested in their employer than their clients will ever benefit from.
They are, with one or two exceptions, Pain Specialists indeed – the worst practitioners ensure ongoing and unrelenting pain exquisitely well!
As always, the exceptions prove the rules, and the few genuinely compassionate and helpful Pain Specialists who do exist, and who aren’t guarded by unfeeling bureaucratic pencil-pushers, are well worth searching for. (For more reasons than I’ve just alluded to, as I’ll explain below).
Mea Maxima Culpa
Over the past twenty-six-odd years of more or less interminable agony, I’ve not only wondered “Why me?”, but I’ve actually tried to find out why I’ve been afflicted with the male equivalent of a spinal childbirth every hour in those 26 years.
And I finally have some answers!
Let me just state, for the record, that I’m not just doing this for myself. While I started out on this quest for the most selfish and self-centred reasons, I’ve been exposed to a surprisingly varied array of persons in the same, or (more usually) far worse situations than my own, and it seems that what’s good for the goose may also be good for others in a similar position.
I’m no Albert Schweitzer, I’m more of a Barry Marshall – I saw a need for some actions, I requested medical approval, with appropriate medical evidence, and I was repeatedly (and arrogantly and nastily, in some cases) denied their support. I’m not sure why, but I suspect Turf Wars may be at the root, although I can understand why someone with thirty-odd years of complete medical training wouldn’t want to be upstaged by a non-medical person with only a few years of reading scientific papers and a badly-scanned copy of the 39th edition of Gray’s Anatomy.
I guess what the medical individuals concerned didn’t realise was that for individuals with chronic pain, anything within reason is worth trying, if it will help reduce the never-ending agony. Actually, quite a few things outside the scope of reason are worth trying: my abortive suicide attempt didn’t work only because I didn’t realise the nature of barbiturate overdose. I suppose I’m grateful for that lack of knowledge. I know better now – but I also know that popping my clogs, apart from the terrible impact it will have on the people I love, is the fool’s answer. I now know enough to at least fight for the right to be heard.
They also didn’t realise that I’m something of a “Renaissance Man”, in the strictest sense of that term. I’m the 21st century equivalent of Robert Hooke, albeit with more modern concepts of intercellular chemistry, physics, and medicine, and I hardly ever drink elemental quicksilver. I’m not saying that to bang my own drum or toot my own trumpet, it’s something I’ve come to realise over the past couple of years – I really do know a little bit about nearly everything, (in any case, far, far more than the vast majority of people); and it seems to me that the best way to expand my knowledge is to use myself as a guinea-pig. At least then we won’t lose anyone important!
There are two areas I wish to evaluate for myself in the very near future. These are hypnotism, and opiate antagonism.
There are actually many more alternatives and options I’d like to investigate, but I’m still in the process of bringing myself up to speed in neuroscience and neurophysiology, and I want to be sure my understanding of the processes involved is adequate. Although, I guess you can’t ever know too much!
I’m feeling Sleeeeepeeeee….
Now, I’m a bit sceptical about hypnotism generally, but only because it’s been touted and over-exposed by quacks and frauds for so long (well, ever since Mesmer himself announced his results).
Since my own chronic pain is quite specific in origin and intensity, I suspect that with the right practitioner, it might be possible to convince my unconscious self that the pain is more bearable, or (my hope) that it’s completely ignorable. These are the wrong terms to use, I know, but until I speak with a serious licensed practitioner, it’s the best I can explain.
My main concerns as far as this goes are :
- How susceptible am I to hypnotic induction?;
- How much of the pain can be ameliorated?; and
- How long will it last?
So those are my “Big Three” I need answered before I will start down that road.
Without going into the whys and wherefores just now (although I’ll be happy to explain the theory later on, if anyone’s interested), it’s quite possible that by mixing a small amount of opiate antagonist (naltrexone, naloxone, etc) in with the opiate infusion in my intrathecal pump, both my tolerance for, and response to, sufentanyl will be massively (more than 60%) decreased/increased respectively.
This isn’t airy-fairy guesswork, this is solidly backed by experiments dating back to 1985. David Meyer (amongst many dozens of other researchers) found that in the vast majority of rats with chronic constrictive pain injury (CCI), their tolerance to morphine in particular could be significantly reduced by admixing the morphine with a non-specific opiate antagonist. Not only that, but the effect seemed to be consistent over time, with minimal (almost undetectable) increase in either tolerance or potency after more than a week of trials!
He couldn’t quite believe the results, and as far as I’m able to tell, no-one else has satisfactorily explained that result. It’s been duplicated many times over, with many different species, but not homo sapiens, and never in vivo. It’s also been used to explain some other features of opiate receptor activity, but not explained per se. So here’s my opportunity!
I find it interesting that this particular group of experiments seems to have been reliable enough to be used as a possible explanation for later, related effects of opioid antagonists and agonists, but not reliable enough to be evaluated in human clinical trials. Since it involves the most insignificant and simple change to a standard treatment regime, it should be eminently testable, and easily proven or refuted!
But this treatment option in particular, was specifically (though not technically) poo-pooed by three different pain management specialists (including one of Australia’s leading pain physicians), but always with condescending tones and arbitrary and confusing non-sequiturs.
I was told the morphine would “crystallise in [my] intrathecal space and cause granulomas” (although it didn’t happen in any of the experiments), I was told that there could be no such effect since the amount of antagonist was far too insignificant to have any possible effect (cognitive dissonance, much?), and finally I was told that what worked in male Sprague-Dawley rats couldn’t possibly work in homo sapiens – at least, not in this homo sapiens.
But I beg to differ. It’s gotta be worth trying, I just have to find a pain specialist who will work with me to ensure appropriate support and aggressive examination of options, medical support, timing and measurement, and so on. Child’s play for me, but apparently an insurmountable obstacle for medical specialists. See what I mean about not wanting to be counted in their number? It would be embarrassing to me!
Who knows, maybe it will turn out that a combination of the two therapies will work. But it has to be tried, and not just for me – if it works for me, even partially, surely it warrants further investigation and more trials, especially since the test itself requires no additional resources, barriers, or ethical dilemmas!
At least I can make the attempt.
Which is more than I can hope for in Australian pain management, where I couldn’t even get the “top echelon” specialists to even consider testing a proven, decade-old shellfish toxin that’s worked well in the US for decades.
Why not? They didn’t want to divert funds from treating bedsores. They weren’t prepared to manage such a trial. It would take too long. The therapeutic window was too small. There have been isolated cases of attempted suicide (true, but then that’s also true for the current state of pain management here!). Oh, yeah, I forgot the best excuse for not trialling it over here : it’s untested over here (I kid you not – they didn’t want to test it because it was untested! There’s that cognitive dissonance again!).
Fingers crossed, watch this space!
Thanks for reading.
Cephas Q Atheos.