Whatever doesn’t kill you makes you stronger!

– Someone who never experienced back pain.

Back pain is a unique kind of pain.

If you suffer from back pain, any back pain, you already know how difficult it is to explain just what it does to you, both mentally and physically, to people without familiarity with back pain. It’s just one of those concepts that you can’t understand until you’ve felt it personally.And if you suffer from chronic back pain – where the pain just won’t go away – then it’s almost impossible to expect people to understand. They think you’re just exaggerating.

I’ve learned that most people I come across have no possible concept of the  unending, savage pain someone with chronic back pain is feeling. I have to remember that most people use panadol (or maybe nurofen) to deal with their worst possible physical pain – and they think that’s a powerful painkiller! I know that none of the panadol or codeine family does anything at all to help me – it would be laughable, if it weren’t so damned difficult to get other people to comprehend real chronic pain! So for most people, who’ve only ever experienced an occasional migraine, or a broken arm or leg or rib, or maybe an operation or two, the kind of pain associated with back pain is a whole new level of hurt, and they just can’t understand it.

The closest I can can think of, in terms of real intensity, is childbirth. But then in most cases, it’s over in a day or two, and at least at the end of the stay, the mum’s got a prize to take home with her. But most people, even most women, can’t comprehend what it means to have never-ending childbirth pain in your spine, every second of every day, day after day, week in, week out, year in, year out. It just doesn’t compute.

Oh, I know what you mean!

I think everyone reading this who suffers from chronic back pain (or any kind of chronic pain problem) will relate to the following experience. Someone you work with, or maybe a distant relative, or a friend of a friend, will come up to you one day and say, “I put my back out last week. I had no idea how much pain you must be suffering!” It’s kind of an apology, in many ways – I’ve found that the people most likely to say things like that to you are actually just like most lucky people, the kind of people who’ve never felt more than a mild headache in their entire life. And so they kind of assumed you were one of “those people” who said they had a back problem, but didn’t really look like they did, and if you were, you were making it seem worse or less than it was. Unless you wear an external brace or something physical, of course, that’s always an instant empathy magnet. (I’m not being cynical, it’s the way people really work. I get more offers of assistance when I’m carrying a walking stick than when I don’t, no matter how slowly and carefully I walk).

Being nice – worth a try.

Dale Carnegie, for all his faults, taught me some really valuable lessons about dealing with people across a barrier like pain.

I’ve learned to be diplomatic when people approach me with their new understanding of back pain, and I end up saying “Well, pain’s pain, and we all feel it”, and then ask them about their discomfort and offer suggestions to help them feel better. So we generally don’t talk about me, and I pretend to be interested in them (and if you pretend long enough, guess what? You actually do get genuinely interested in them – and people can tell when you’re being genuine!). That approach allows me to not be the centre of attention, but to get them to express their negative feelings about pain and how it affects them, which helps them to project those feelings back on to you. So they get to understand how you feel, not by you telling them about the ice-picks in your spine, the fire in the small of your back, or the clenching hell between your shoulders, but by letting them put their own words on their experience, and you looking like a patient, forbearing, nice person with a hidden secret that they now share in. It feels good, let me tell you, and they almost never forget what you go through. Try it, it’s worth the effort.

But it turns out that this is a Bad Thing to do, when it comes to medical personnel!

If You Feel It, Let It Out!

One of the most difficult things I’ve learned over the past few years is how to strike a balance between letting health professionals (like medical receptionists, GPs, specialists, radiologists, and surgeons) know how much you’re hurting, and not being overly dramatic or foolish about the whole thing. The last thing you want is people you deal with regularly thinking you’re some kind of drama queen or pathetic whinger, especially when you understand they deal with people with far more terrible pain and problems than you. You’ll appreciate this when you go to a new pain specialist, feeling pretty miserable after a bumpy, hours-long car trip, and suddenly find a waiting room full of wheelchairs, portable ventilators, armless/legless people, and worse. It makes you feel a little insignificant – which it should! – but it doesn’t invalidate your pain.

I’m naturally a happy-go-lucky son-of-a-gun, and I can wear an awful lot of pain without continually grimacing or grunting or moaning and groaning. As you can tell from my little stories above, I naturally try to make other people feel comfortable around me – it’s just the way I tick. So I like making jokes, smiling at people, making eye contact, expressing interest in their little problems, and doing what I can to not be a miserable bastard, but at the same time, I need to let them know I hurt more than they can imagine.

So I’ve discovered that this natural humour works against me, especially when I have to deal with new medical people. In fact, I’ve found out recently that it makes them think I’m not in as much hellbent agony as I really am – and that’s led to three pain specialists thinking that I didn’t deserve their respect or treatment. I’m now on the search for a new pain management specialist, and hopefully by this time tomorrow I’ll have one.

Then the training begins – I’m going to have to teach yet another medical person how to work with me instead of treating me like a piece of meat, how to talk to me without dumbing it down, and how to make sure they “get” me and my goals and aims.

I’ll discuss some of my medico-training strategies in a later post later on. Right now, I gotta lie down and get my sanity back!

Thanks for reading, and I hope this gives you some tools to help deal with this sort of issue in your own life.

Please, do feel free to add your own ideas, suggestions, and comments below. Or, if you have some questions, or if you think it sounds too easy (or too difficult), let me know and we can maybe have a chat and figure something out that will work for you – or you can tell me your ideas and they might help other people in the same boat!

Cheers,

Cephas Q Atheos

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!

The Options

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 :

  1. How susceptible am I to hypnotic induction?;
  2. How much of the pain can be ameliorated?; and
  3. How long will it last?

So those are my “Big Three” I need answered before I will start down that road.

Opiate Antagonism

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.

Here goes nothing…

I think they call what I’m trying to do here “rebooting”. Basically, it’s the internet equivalent of the chalk duster, though perhaps more perfect and less messy.

So. This is my nth weblog attempt in as many years. My previous excursions into the huge, hollow amphitheatre of the web all turned into places I could squeeze the pus of my soul, but not much more. Perhaps the internet equivalent of a handkerchief (remember those?), and about as pleasant to see. (As were the strange, disjointed, and frightened people those weblogs attracted!)

Which was silly, in many ways, because I’m not an unpleasant person. I don’t have an unpleasant personality, and I detest unpleasant people. And yet, in the mirror of my weblogs, there I was: all horrible, frustrated, and nasty, with ne’er a good word for anyone or anything. There were very, very good reasons for that, but it’s not the whole picture, more a badly-drawn and unlikeable caricature. Who would’a thunk it, hey?

So let’s “reboot” this motherfucker, and see if I can leave a shadow of my real self where other, likeminded people can find and appreciate it. Who knows, it could be fun! And at least it’ll be pus-free.

OK, what’s with the dexter, median and sinister bits?

Yeah, it sounds all arty-farty and high-falutin’, but really it’s my attempt to duplicate the strange phenomenon in physics called “symmetry breaking”. The words “dexter” and “sinister”, with all their added freight, hark back to the days when knights of old clanked around what they thought was the whole world carrying huge, heavy, business cards called “shields”.

The funny thing about the way those business cards were described was that the “left” (sinister) and “right” (dexter, right?) were described from the bearer’s perspective, not the poor unfortunates who got to view the shields (usually just before they got stuck with a big sharp pointy bit of low-carbon steel). Think of it as handing out business cards with all the writing reversed. So a “bend sinister” was a bar that ran from your right upper point to your left lower point – which is all arse about when you really think about it.

What all that verbiage means is that I’m hoping to be able to offer a slightly flipped perspective on the various bits of mental flotsam, news items, and ideas I’ll be writing about. With a little luck, there may even be a tiny dash of humour, though that’s not the point – I’m always and will ever be a very funny person, but I’m not a funny writer, and I’m not going to try to be a comedian, because that will just annoy you and enervate me. And let’s face it, there are millions of funnier, smarter, cleverer, hunkier, and more thoughtful webloggers out there, and I’m not going to fash about trying to better them for the hell of it. I’ve got more important things on my mind.

Thank you, wanderer, for dropping by, and do please leave a comment or a g’day if you feel so inclined!

On with the show!