Around 5 years ago, I had what I can only describe as another health crisis.  The previous one, a few years earlier, had been a ticking time-bomb for many years so was entirely expected; eventually, my life ground to a complete halt, and I found myself unable to walk, drive or work, so surgery was duly performed.  This more recent crisis was different.  Firstly, it was unexpected.  After all, I’d finally got the much-anticipated new knee joint, and although it wasn’t as amazing as I’d hoped, it worked far better than my creaky bones had done before.  My GP had gently advised that I would most likely always have some issues within that knee or leg, but to keep taking the tablets was all that could be done.  I took this as reassurance that the worst was now over, and that my then-existing levels of mobility (which were OK and enabled me to have some semblance to a normal life) was what I could reasonably expect until the replacement wore out in 10-15 years’ time.  Apart from Bastard Knee / Stupid Leg and depressive episodes (most often related to pain management issues) my health was very good, I seldom even caught a cold, and only rarely visited my GP for any other health problems.  Secondly, this crisis episode was more subtle, gradual, sneaky even.  Gradually, over a period of a months, all manner of strange ailments slowly appeared but didn’t disappear with time, as I’d hoped they would.  I started experiencing widespread aches and pains all over my body, suddenly both legs seemed to be unstable, weak and achy, and my arms were especially painful, with shooting pains going their full length right into my fingertips throughout the day and night.  My limp became more pronounced, although I was no longer sure which leg I was actually limping on, my arms hung limp and heavy by my sides because it really hurt just to raise them, I dragged my body around like a leaden weight, my depression level plummeted back into ‘severe’, and I felt completely exhausted most of the time.

I went to see my GP, and promptly burst into tears as I did a really rubbish job of trying to explain all this bizarre pain to her and not appear overly hysterical.  She had no ideas, but started with a bog-standard blood test, which would help to eliminate potential areas of concern, eg. thyroid issues.  The test results were encouraging, nothing alarming to report except that I was massively deficient in Vitamin D which, she explained, can cause pain and tiredness.  So, I was blasted with Vitamin D for the next few months and finally my levels became within the range of ‘normal’.  But, the exhaustion and pains continued, as did my depression.  She decided to refer me to The Pain Clinic, to check for problems such as M.E., despite me arguing that how could this be considering that I hardly ever got ill?  The Pain Clinic concluded that I was ‘chronically fatigued’ (which didn’t necessarily mean I had CFS) and that I could also have Fibromyalgia, but they weren’t sure and couldn’t do any further diagnoses until my depression was under control.  I was sent back to my GP who, once again, suggested anti-depressant medication which I, once again, declined.  She also asked about my opioid analgesic intake, and when I told her that I only took them once a day (from a possible four daily doses) I was told to increase the dose to the fullest if necessary, in an attempt to get the pain under control.  So off I limped, feeling far more depressed than when I’d first sought help some months earlier, worrying I’d become a hypochondriac, doubting my own ability to understand what was going on with my wretched body this time, and concerned that I’d been labelled with some strange illness that was both invisible and impossible to diagnose with any certainty.  I wasn’t looking for another  label, the last thing I wanted to hear was that possibly something else was wrong with me (decades of OA is more than enough to deal with), and if I must have a new label I want hard empirical evidence to back it up.

So I kept taking the tablets, and despite gradually increasing the dose to the maximum, the pain continued and its intensity increased from soreness and aches into stabbing pains.  I also had more mobility problems and joint stiffness, especially in my legs, and my left foot had begun to turn outwards.  I did drag myself back to the GP a couple more times over the coming months, but the response was the same: Keep taking the tablets, and some anti-depressants would help too.  After about a year, I gave up on the medical profession yet again.  If this was Fibromyalgia, it was awful and felt I should get treatment – but they wouldn’t continue their investigations until my depression was under control; I couldn’t access any kind of talking therapy and I didn’t want anti-depressant medication, but that was all that was on offer.  I began taking more time off work due to stress, depression, mobility issues and generally not being able to cope with the demands of my rather lowly job; I was exhausted and already tired of fighting against something which I could neither see nor make any sense of.

By now, my health and mobility had been slowly but surely deteriorating for around 2 years and with no sign of any solution from anyone anywhere.  However, one cold dark January morning this all changed – not because of some medical genius intervention, but because I somehow managed to accidentally overdose on my opioids that morning whilst getting ready for work.  I’ve never been a ‘morning person’ and am damned useless until around lunchtime anyway, but I got extra confused that morning about how many and which pills I’d taken; the pain was horrific so I must’ve concluded that I hadn’t taken the opioids yet so took more, and ended up taking double my normal dose.  I realised as soon as I got to work, and ended up going home again to sleep it off, no harm done.  But, this incident acted as a real wake-up call for me – it was partly the realisation that I was so bombed out all the time on opioids that I had little idea of what I was doing or memory of what I had recently (even within the past hour) actually done, and partly that I was experiencing horrific  pain which was actually getting worse despite a massive increase in dosage compared to previously, and the pain clearly wasn’t going anywhere.  So, I did what I always do at such times, I had a massive tantrum and decided I wasn’t going to keep taking the damned tablets, I was going to stop, there and then.  And I did, just like that – which was a huge surprise to me because, having been taking opioids for around two decades, I did suspect that I was probably addicted to them by now and would find it difficult, if not impossible, to give them up.  The other interesting thing which happened, which took me completely by surprise, were my expectations of myself, my mobility and my pain having made this somewhat desperate decision.  Here, I will make a brief diversion – please bear with me…

Over the years of trying to manage my OA, I have become increasingly interested in the psychology of recuperation, healing and pain management, and it’s fascinating stuff.  Now I have reached an age when (at last!) my friends are starting to complain about having various aches and pains, and recommendations for complementary or herbal ‘remedies’ are flooding in.  I do listen and have even tried a few, but unfortunately for me nothing seems to work, which they have suggested is because I don’t believe it will, and therefore it doesn’t.  I have put it down to the fact that I have a long-term, serious degenerative condition in comparison of the relatively minor aches and niggles which they are now experiencing.  In fact, my very arrogant attitude is “Well, their pain is minor compared to mine, I have proper pain, that’s why this stuff works for them and not for me.  They don’t know what real pain is!”  But is this really what’s going on here?

Recently, I watched a BBC TV programme called ‘The Placebo Experiment”, where a British GP was investigating the potential of placebo medication.  The volunteers for the experiment were all adults who were experiencing chronic back pain, some unexplained, others had a variety of  diagnoses, including herniated discs and even cancer.  They were told that they were participating in a trial for a new analgesic drug, and that half of the group would be given this drug whilst the rest of the group would be given the placebo.  They were not told which group they would be in.  The actual ‘drug’ was nothing more than ground rice, which ALL the participants were given, and the results were astounding – 46% reported a significant reduction in their levels of pain, some reported that the pain had gone completely, and some had even given up their previous medications in favour of the ground rice placebo (including a wheelchair-bound man who had been taking large doses of morphine for many years).  This new ‘drug’ was carefully designed and packaged to look like a real prescription drug, to convince the participants that it was authentic, and this seemed convincing.  Alongside the ‘drug’ trial, was a parallel trial relating to the amount of time allocated to GP appointments, where some participants got the standard 9 minutes, whereas others had the luxury of a 30 minute consultation – predictably, the participants with the longer consultation times invariably reported improved physical and mental health.

This placebo tale is fascinating for many reasons, most obviously for highlighting the power of the mind to heal should the belief be strong enough, and the ability to acknowledge and accept pain, or even the potential to deny its existence.  For many years, I have questioned myself about whether I imagine at least some of my pain – like I said in my previous post, what do you do when something which has been part of you for so long is finally taken away? Can you even begin to imagine what your life could be like without it?  and I have been genuinely worried on several occasions that, in the absence of solid empirical evidence pinpointing a reason for my pain, that perhaps I am just imagining it?

Osteoarthritis and referred pain are tricky blighters, and actually pinpointing the source of the problem can be time-consuming and extremely frustrating.  There have been several times in my life when I have had real debilitating pain, only to be told that there is nothing wrong with me; this was most pertinent when I was a child and it took some time to actually discover what the problem was, and I think those experiences left me with an anxiety relating to the importance of being believed and taken seriously by the medical profession, and this is especially difficult when you are a child.  However, what I have realised only quite recently is that I have actually NEVER been wrong or complained out of turn where there has been nothing to find.  I have also learned that I am, rather surprisingly, extremely tuned into my body and am very aware of what’s actually happening with it, even though it might take some time to find the source of the problem.  Not only do placebos not work for me, sometimes my own expectations disappear before my eyes, and I now have complete confidence in my body to inform me of what is going on with it, and when to take action.

Now, back to my decision to no longer take opioids.  I fully expected for my pain to continue to increase (after all, the opioids were my only meds specifically to manage the pain) and for my mobility to decrease even more.  I expected to no longer be able to walk, even with sticks.  What actually happened came as a complete revelation, the full extent of which I realised over the next week.  Firstly, I experienced less pain, a lot less pain.  I woke up with a feeling of extreme dread at the prospect of hauling myself out of bed and trying to stand up, but I managed this fine and managed to do all the usual problematic morning stuff without any major problems; several hours later, I realised that the pain was reduced and my mobility was ok, and this easing of pain continued steadily for about a week before stabilising.  The most obvious and welcome discovery was that much of the pain had disappeared completely – my arms felt normal and the shooting pains which previously ran down them all the time had ceased.  What I was left with was pain in my lower body which felt like classic OA symptoms, but I did appreciate that there was a physical reason for it, and felt reassured that the neurological pain had now gone.  I was massively relieved, but very angry too at the realisation that the opioids had been creating all this additional pain.  Better still, my head felt better, and stopping the opioids made me realise just how wasted I’d been for so long; I was aware that my head was constantly really fuzzy and I was scatty and forgetful, but until then I had no idea just how messy I really was.

I made a GP appointment, a different GP this time because I felt extremely disappointed in the previous one and have refused to see her since.  My anger was more critical than anything else: Are you aware that these meds cause pain, significant additional pain?  Why was I told to keep taking the damned tablets, and more, and more when my health is obviously deteriorating?  I feel like I’ve been slowly poisoning myself for the past 2 years!  And why (FFS!), am I being labelled with some neurological complaint when you haven’t even checked for arthritic problems, since my medical record is overflowing with OA issues?!?  The new GP was good, and helpful and sympathetic.  He reluctantly mentioned the possibility of Hyperalgesia  and more specifically OIH, the result of over-exposure to opioid medications, but said it was rare and difficult to diagnose with any level of certainty.  Again, I didn’t want another label so didn’t especially care whether I had OIH or not, I just knew I would be avoiding opioids from now on.  This issue with opioids raises several questions, which are rather disconcerting:  If GPs are aware that OIH can result from long-term prescription opioid use, why wasn’t my medication monitored more carefully?  What are the alternatives to opioid analgesics for OA?  (very few apparently, the pharmaceutical companies have become very rich on the back of massive prescription opioid use)  What am I supposed to do now to manage the pain?!?

Although he had redeemed himself slightly with his honesty about OIH, this didn’t solve my more immediate problem of trying to manage my condition without any analgesics.  I explained that I still had considerable pain and restricted mobility in my lower body, so I was sent for an x-ray of my pelvis.  A couple of weeks later, another GP phoned back with the results: in comparison to the previous x-ray a few years earlier, considerable OA had developed in both of my hips, my left hip was classified as ‘severe’ with bone-on-bone contact, and my right hip ‘moderate-severe’, OA was also present in my lower spine, and it had developed rapidly, at a previously unanticipated pace.  I was appalled, for several reasons.  Firstly, the fact that the arthritis had spread – I never expected it to spread anywhere else, I had always assumed that I had a rubbish knee and it would stay in there.  I saw no reason for it to go anywhere else, but clearly it had different ideas.  Secondly, thanks to the opioids, I had no idea that I had an on-going serious problems within my hips.  The opioids had done such an excellent job of dulling the physical pain and distracting me with other neurological pain elsewhere in my body, that I actually had no real understanding what was going on myself, let alone being able to explain the location and intensity of existing pain to medics, or discern between what was physical or opioid-induced neurological pain.  And thirdly, surely but surely, when someone with a decades-long history of arthritis visits their GP complaining of being in pain, surely the place to start is to take a look at their joints, or wangle their legs about a bit just to check that everything is moving ok?!?

I was immediately referred to a consultant, and the surgery was performed 6 weeks later.  This was the fastest procedure I had ever experienced with a joint replacement.  With my knee, replacement surgery was confirmed as the only option and I had more than a decade to get used to the idea before the deed was finally done; but the hip x-ray was damning, and I underwent a full replacement on my left hip 10 weeks after the x-ray report was received.  My head was reeling – I’d barely had time to even get used to the idea that my hips were knackered, before a shiny new joint was installed in there and begging for me to make far more effort with the physio.