“Why me?!” Chapter 7: Mistakes, misdiagnoses and medicinal mutiny

Around 5 years ago, I had what I can only describe as another health crisis. tablets 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.

1074471_opioid-addiction-concept-al-17 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.

“Why me?!” Chapter 6: Are we there yet?

Are we there yet? Well no, sadly not, and it appears that I still have another couple of are-we-there-yet chapters to write before we do get there. Reaching The Present and being able to write about what’s actually going on currently still feels just out of reach. It’s interesting how frustrating this can feel. In my head, I’m aware that my experiences of Osteoarthritis have gone on for a very long time, but somehow I have had this mistaken belief that I can just write it all down quickly before moving on to the present day, where my thoughts, feelings and experiences will be a lot easier to record since they are part of my present. Somehow it hasn’t worked like that. Dredging up memories and trying to assemble them into a combination of complex and accurate facts and a readable tale isn’t as simple as it would seem, and it’s something of an emotional roller-coaster as I find myself reliving times and experiences which, if I’m honest, I would prefer to forget. I continue to be amazed at how much and the level of detail that I do remember.

Flashback to a decade ago, I’d finally had surgery to rectify the problems within my left knee – a partial lateral replacement. The estimated recuperation time was 8 weeks, but the actual recuperation period was around 6 months. My employment status was now ‘unemployed’, my depression level was severe, and consequently, my level of self-esteem was extremely low. Healthwise, things had been difficult but were now improving slowly; I could now walk without a stick, I had plenty time due to being unemployed, and I spent a lot of time outdoors, gardening, dog walking, I’d started going to the gym to try to rebuild the muscle mass which had deteriorated and impacted on my ability to recover fully, and I continued with the post-operative physio exercises – after all, I’d been told I’d be able to run again, and I foolishly believed him. My mental health and self-esteem issues meant that no-one was queuing up to offer me work any time soon, so I had plenty time on my hands to focus on my physical recovery; I hoped that the mental health issues would sort themselves out as my physical health and mobility improved and a few months later, I managed to find some part-time work and returned to a relatively ‘normal’ kind of life, for a while at least.

But, I still experienced pain, nasty burning pain, creaking joints, stiffness, and rattling crunching noises within Bastard Knee. I went back to my GP – not to demand a refund or shout about being conned by this surgery, but simply to ask whether it had been successful because I really wasn’t sure. Some issues had been resolved, others hadn’t, and some new problems had appeared, so it seemed a fair question to ask. I was told, very gently, that my expectations far exceeded the realities of this type of surgery, and that I would most likely always experience some problems with it due to having to wait so long for the surgery to be undertaken. This was obviously not what I wanted to hear, but it sufficed as an explanation – at least it was honest. I was advised to continue taking opioid painkillers as and when they were needed, and I assumed that that was that.

A few years later, the pain became more difficult to manage and my limp returned, so I went back to my GP and was sent for a hip x-ray. The x-ray report came back as ‘normal for your age’ (I was now in my late 40’s) with some evidence of degenerative change within my left hip but seemingly nothing to worry about. I felt both puzzled and embarrassed, and began to wonder if I was just imagining the pain – after all, pain had been an integral part to my existence for so long, perhaps I was psychologically creating it in order to feel like my normal self? What do you do when something so familiar to you is apparently taken away? Do you psychologically create something else to take its place? Despite the embarrassment of wasting NHS time and money on this x-ray, in retrospect it has turned out to be an extremely useful image for comparison for the events that followed a few years later.

A tantrum, some cold turkey, and an epiphany

A week ago, I had a temper tantrum. It isn’t something that I am especially proud of, and thankfully it happens rarely, but when I do kick off, it is invariably about medication – the frustration of meds not working as they should, the horrible pain that never stops, the side effects, the general feeling of hopelessness about the whole situation, and the annoyance with myself that I’ve fallen for it yet again despite knowing that it simply doesn’t work for me. I’ve been here before, about a year ago, when I had a mega tantrum; I went off in a sulk, immediately stopped taking opioids and was astonished to find that I experienced far less pain. So why don’t I learn? What is it about my messy head that makes me keep reaching out for something which has proved, not once but twice now, that it actually creates more problems than it resolves?

I started taking a very low dose of opioids again in January. I’d stopped taking them about a year earlier (after the especially impressive tantrum) and apart for a couple of weeks of being blasted with morphine due to more surgery last summer, hadn’t taken any since. By January I was struggling to walk, was fed up of being on sticks, took an age to cover even the shortest distance, and had been told that opioid intolerance is short-lived and that after a couple of months’ break they would provide effective pain relief once more. So, stupidly, I started taking a very low dose of them once again. As anticipated, it all went swingingly for a couple of weeks, all that lovely warm fuzzy feeling tingling throughout my body, diminished pain, and a feeling of being totally wasted for several hours every day – what’s not to like?! But, a month later, it turned. There was more pain, widespread pain, no lovely fuzziness and feeling too bombed out to function even at a basic level. I gave it another month before realising that I needed to stop taking them because there was simply no obvious benefit in continuing. No tantrum , just a simple acceptance that this wasn’t working and I needed to stop.

Anyway, who needs opioids? Not me, I had a Plan B. Following a raid on my rather shamefully large stash of scary medication, I dug out some non-opioid strong pain killers and decided to give them a whirl again. I’d been prescribed them post-surgery last year, and apart from a few stomach issues, I couldn’t remember anything worrying about taking them. Feeling somewhat smug at ditching the opioids and optimistic about taking a non-opioid alternative instead, I took the first dose. After about half an hour they kicked in – the pain all but disappeared, as did my cold symptoms (an unexpected bonus), however I experienced very strong nausea, clamminess, cold sweats, shakes, drowsiness, feeling totally wasted (again), forgetfulness, disorientation and diarrhea for the next couple of days. I’d taken one of a possible three doses for the day. Needless to say I didn’t take any more, I’d rather deal with pain than all that stuff, and the side effects finally wore off after about 4 days. The tantrum began on Day 1 then tailed off a few days ago. I decided to not take any more medication, but I do feel incredibly upset and frustrated that, in the 21st century, we don’t seem to be able to find any medication which deals with this type of chronic pain, that enables a person to carry out simple daily activities without it being a major achievement, and to ease the co-morbidity of associated mental health issues and depression. My condition and type of pain is not in any way unusual, but I now totally despair of finding anything which can improve the quality (or lack of) of my life and feel completely let down by the medical profession.

Tantrum over, and I am now ‘pill free’. My pain is now managed by my ever-faithful hot water bottle, which is my constant companion (and, incidentally, appears to possess more pain relieving properties than any of the painkilling medications I’ve been prescribed). I’m currently experiencing what I hope is the tail-end of the ‘cold turkey’ phase – my body screaming out for opioids by producing various nasty aches and pains, but my brain’s not buying into that nonsense. I’ve been there before, and am in no hurry to go back.

scan-comparison Stopping all medication isn’t any easy option, and probably doesn’t work for everyone, but if you can manage to do it, there are massive benefits in doing so. These two images are very revealing (no pun intended) in that they are records of the pain I experienced at specific times. The image on the left shows the pain I experienced on a particular day around a fortnight ago – it is not unusual for that time, the other days are much the same. Clearly, there is widespread pain in most areas of my body; most significant is that at this time, I was taking a low dose of opioids and a continuing long-term dose of NSAIDs. The image on the right is from yesterday, almost a week since taking any medication, and what is screamingly obvious in this is that the pain is less widespread, very specific and logical – basically, the pain is there because there is a physical reason for it, in this case, it is because of arthritic deterioration in my right hip. What I find astonishing about these images is the amount of pain and distortion which painkillers and NSAIDs can cause. I’ve recently had several visits to medical specialists (leg, knee, spine, musculoskeletal etc) all of whom are trying to diagnose what the problem is and where the pain is coming from, and they’re struggling. I originally started creating these diagrams to help them with this, thinking it might be a useful tool for them to consider, however, looking at these images, it is clearly incredibly difficult to diagnose anything where medication is interfering with my body’s pain receptors alongside the side effects of supposed painkilling medications.

The epiphany of ‘pain killers create more pain’ is difficult to accept, because it undermines much of the conventional approaches and treatment of chronic pain. It is also worth noting that not everyone has such issues – many people manage chronic pain with opioids with no such responses to them, as I did for around a decade. However, now that my body is clearly intolerant to them and I may also have developed OIH (opioid induced hyperalgesia) as an added bonus, it is vitally important for me to find alternative ways of managing my pain – and if that means no medication, so be it. Coming off the meds is rough, physically and psychologically, and I think I must be pretty desperate to even attempt it. As you might expect, the physical pain is more intense than when using painkillers, but not by as much as you might expect, and psychologically I have found I am more able to manage the impact of the pain because it is far less widespread and there is a real physical reason why it is there. Finally, what I really appreciate about this, is that my head has regained a bit more clarity, I am now less muddled and I can think more clearly; it’s like a heavy fog lifting, and finally what you see is clear.

Joined At The Hip

osteoarthritis-final-1170x500

We’re inseparable, you and I.

Wherever I go, whatever I do,

From events of importance to the mundane daily trivia,

You are always with me,

An unrelenting presence

Consuming my body and penetrating my mind.

When you first introduced yourself,

I’d barely hit adolescence.

There was considerable head shaking, disbelief even.

“She’s way too young for this. How can this be?”

And they were right –

You were far too old for the likes of me.

Nominal interventions to get rid of you failed.

I learned to adapt and reluctantly accept that

You were here to stay.

Crunching, grinding, crumbling,

Bone eroding to dust,

Rattling osteophytes detach and stab into my nerves,

Gasping, whimpering, wincing and weeping.

Bone on bone, friction, abrasion,

Burning, aching, throbbing,

Limping, shuffling, hobbling.

You are much more than a degenerative disease.

You are a malignant parasite,

A sadist, a narcissist, a controlling monster,

A shameless attention seeker

Who heaps pain and humiliation upon me with every movement.

I reluctantly surrendered a part of me to you long ago

But your greed knows no bounds,

You always want more,

As you continue on your quest to consume me,

Utterly and completely.

But what will you do then, when the job is done?

When there’s nothing left for you to feed on, damage, destroy?

You have taken over my world,

And I have no choice but to adapt my life

To accommodate your gluttony.

My hopes, aspirations and opportunities

All modified, dashed or carelessly abandoned

As you, slowly but surely, dominate my past

And take control of my present and my future.

Disintegrating, decaying, fragmenting,

The fragile relentless rot of a dilapidated broken body.

You are my whole world,

You define me.

I limp therefore I am.

Red tape and jumping through hoops

This is an update relating to a previous post, But it’s my body, isn’t it?, and my ongoing quest for access to copies of the various medical images and x-rays relating to my osteoarthritic condition. During a recent appointment with a consultant, I asked the Awaiting-Images question again, and happily this time the response was more positive. However, so far I appear to have made little if any progress in attaining this apparently simple goal, and I’m puzzled about how or why this should be the case. Is it that the medical profession are afraid to give you access to such things because they are concerned that you will do something silly such as starting litigation processes, or is it simply a case of disorganisation and lack of communication? The fact that this is the first time I’ve had a positive response to this request is interesting, and perhaps has some connection to the new Data Protection law which was introduced into the UK last May. Certainly in the past, my requests have consistently been greeted with a resounding “No, you can’t!”. So I am now wondering whether it is a case of if I jump through enough hoops, I will get there in the end; or perhaps it’s just that they’re hoping I’ll just give up and walk away? The saga so far is that you simply couldn’t make this stuff up…

following consultant appointment

me: I was wondering, would it be possible to have copies of my MRI and X-ray images?

Consultant: Yes, of course. Go to Radiology and put in a request.

Radiology Assistant: No you can’t. We don’t do that here. You need to go to MRI, in the basement.

MRI Assistant: No, I’m afraid we don’t do that here. You need to go to Radiology.

me: But the consultant sent me to Radiology, and they sent me here. I’ve just come from there and they said to come here.

MRI Assistant: OK, well that’s the wrong information, we don’t deal with that here, so the only thing I can do is to give you this form. Complete one form per image request, scan it, then email it to the mailbox address on the form. There’s no room number or contact telephone number I’m afraid, just a mailbox.

at the local Medical Centre

me: Hi, I’m trying to request copies of my x-rays and MRI images from the hospital. I’ve been given this form, and I need the dates and the name of the doctor who referred me for each image requested.

Medical Centre Assistant: Ok, no problem, just take a seat, it could take a while…

me: Do you have access to these images? Presumably they’re kept on my electronic file? Can you issue copies of them?

Medical Centre Assistant: I’m afraid not. They can only be requested from the hospital where the images were taken.

at home, after scanning, printing out 4 forms, completing 4 forms, re-scanning the completed forms, and writing an explanatory email about requesting the information

me: FFS!!! the b**ody attachments are too big to send!!:-( I’ll have to take them in in person.

back at the hospital again

me: Hi, I’m trying to find where the PACS department is? I’ve got a form to deliver but there’s no room number or telephone number. Can you help?

Information Assistant: Oh, I’ve never heard of that. Try the General Office, down this corridor here.

General Office Assistant: Oh, I don’t know where they are, and oh, there’s no room number or telephone number. Just wait a moment and I’ll ask if anyone here knows anything about this… I’m afraid it’s just a mailbox, we don’t have a name or location for them. Can you email the information to them?

me: Well, yes I can, but when I tried I could only send one attachment per email, so I’d have to send four separate emails. I was hoping you could send it by internal post, but obviously not if there’s no room number or person’s name attached to it.

General Office Assistant: Well it would be Radiology that would deal with that. Can you take it down there?

me: I tried that last week but they said it wasn’t something that they dealt with, even though my consultant said to ask there. Could you send it internally? I’ve got all the documents in this envelope, and a copy of the email I wrote which has got all my contact details on it.

General Office Assistant: Yes, I can try. I’ll put a note in with it.

me: Thank-you, that’d be great. Also, could you ask them to contact me if there’s a problem and they aren’t able to deal with it, just so I know if it still hasn’t reached the right place?

General Office Assistant: Yes, I’ll do that, no problem. You should hear from someone within the next week or so.

So that’s that, and apparently is all I can do at the moment. A week later, I’m still waiting and haven’t been updated about whether the forms have reached the correct destination or not. I’ll give it another week, then start chasing them again. How can something so apparently simple become so complicated?! Meh, I have plenty time these days, plenty time for red tape and jumping through hoops…

The Yarn Whore

For the past six months, I’ve been knitting socks. I had heard from various reliable woolly sources that knitting socks was “very difficult” and it was necessary to juggle more than two needles at a time, so despite being an extremely obsessive and socks1 experienced knitter, I convinced myself that I wasn’t good enough, or lacked the necessary discipline, or wouldn’t have the patience to manage to make even the most humble of socks – or worse still, manage to end up with a single sock and not be able to persuade myself to make an actual pair.

I was first taught to knit by my mother when I was very young, I think I was about 4 years old, and I’ve always suspected that her intention was to give me something to do which would keep me quiet and distracted. I used to knit up balls of string, then when the ball came to an end, I’d unravel it and start again. My mother wasn’t a particularly talented knitter, she knew the basics of knit, purl, cast on and cast off, so as a child I was limited to making dishcloths as presents for grandparents. But there was something about the process which really appealed, something elusive and intangible. By the time I hit my teens, I dived fearlessly into designing and making jumpers – huge, baggy affairs which often went down to my knees, were too big across the shoulders and had sleeves which were too short; the jumpers available in the shops were truly hideous, clingy affairs so it seemed the perfect way to resolve that problem and improve my knitting skills as well. There was also some kind of knitting revival going on at the time, and for the first time ever, beautiful crazy yarns were available, including fluffy mohair in a range of sumptuous colours. I was hooked, and have knitted obsessively ever since.

Medically, there has been a lot of discussion about knitting and its mental health benefits, and most recently, there has been a lot of debate and consideration into the concept of Social Prescription, rather than the more traditional approach of sending you away with a few bottles of pills. Social Prescription is the idea of recommending an activity, preferably one with social interaction, to improve not only mental health issues but also physical health issues such as lowering blood pressure, etc. Social Prescription activities are many and varied, and could include knitting, fishing, walking, sewing, painting, pottery, or basically any creative activity which has the potential to distract from current or ongoing health issues and increase social interaction, and in the UK, GPs are being actively encouraged to prescribe, for example, knitting rather than more pills.

So what exactly is it about knitting which works for me? As a self-confessed Yarn Whore with an obsessive compulsion to click away, what is clear is that knitting is a multi-sensory experience. With the exception of taste, knitting brings a feel-good factor to all the other senses: visually, the yarn is beautiful both prior to and after knitting, and the range of colours and textures available now is incredible; the gentle clicking sound of the needles and the subtle smooth sound of yarn sliding off the needles is very calming; the textures of different yarns as they slide through your fingers are curious and varied, as is the way that the different yarns respond to the knitting process; and the different scents of the yarns reflect their various compositions and fibres, from the relatively strong smell of natural wool yarns to silks and cottons (yes, they all have a different scent!). But the sensory response to the process is arguably not what makes knitting a really positive activity to get in to. Yes, any creative process will benefit your mental well-being, but the knitting experience brings with it a rather hypnotic, meditative state which I haven’t experienced with other creative processes. When I knit, my body starts to physically move very slightly, responding to the movements of my hands and arms; in passing the yarn around the needles or when slipping stitches off the needles, my body begins to sway slightly, rhythmically, gently, my breathing follows these rhythms, and it is this range of movements which makes knitting such a meditative, relaxing process. Furthermore, most knitting demands some level of concentration (I’m thinking aran or socks here!) which forces you to focus, not get distracted, and so you will inevitably focus less on your health issues.

So, back to the decision to suddenly man-up and try to make socks. Actually, I bought my first-ever sock yarn last summer, deliberately prior to going into hospital for surgery – for some bizarre reason, I thought this would be an excellent idea. I took it with me, looked at it a few times, then wimped out and put it away again; it seemed that it was a really stupid idea to try to improve my existing skills by learning something new at such a time and was just too much to deal with. However, after a couple of weeks at home, when my physical symptoms were a bit easier to manage, I decided that I needed some serious distraction so started on the much-avoided sock challenge – and I loved it! I learnt to knit on five needles, began to understand why socks need to be knitted in a certain way, and had (very sensibly) bought some self-striping yarn so I wouldn’t get bored, and I have obsessively knitted socks ever since. I have written three different patterns so I can knit socks in different yarn weights, and as soon as I finish one pair I start another, I just can’t stop! What was most apparent in all this was the soothing, meditative effect of knitting on my body and my mind at this difficult time, and I would have really struggled to cope without the distraction of the knitting process alongside the satisfaction of making something beautiful.

I now have far too many socks and need a bigger sock drawer. I probably should give some away as gifts but they all feel special to me and I don’t really want to part with them, not yet anyway.

For more information about the benefits of knitting, click here

“Why me?!” Chapter 5: Be careful what you wish for…

partial-knee-2 In 2010, my arthroscopy was swiftly followed by surgery for a lateral unicompartmental knee arthroplasty – put simply, a partial replacement on the outer side of my knee. Yet despite scouring the internet for an accurate picture to accompany this post, I am left disappointed; my prosthesis looks nothing like this rather neat and immaculate bit of kit. Mine is a different shape, has four screws at various exciting angles which attach it to my bone, and the crazy desperation of the whole thing appeals to my rather warped sense of humour; I kind of like the idea of being held together with a few screws.

Once again I was informed that I was ‘an unusual case’, not simply because of my age (I was now in my early forties, so comparatively young for this type of procedure) but also the relative rarity of lateral partial replacements – a professional contemporary article states that this type of replacement was not only a more complex and challenging procedure than other full or partials, but accounted for only around 1% of knee replacement surgeries at that time, since damage is more commonly and readily sustained to the medial surfaces. The arthroscopy confirmed that there was absolutely no cartilage in the lateral compartment, just bone-on-bone, whereas the medial compartment, where arthritic deterioration is most often sustained, was completely healthy; it seemed I was the only one who wasn’t surprised at this. Evidently, the surgery performed in my childhood had done a truly excellent job of removing the cartilage, and had inadvertently created perfect conditions for osteoarthritis to develop and thrive. The “Why me?!” question returned with a vengeance, swiftly followed by its recently acquired companion, “Why am I so cursed with this Bastard Knee?” In my mind, there was only one logical conclusion; the surgery which was intended to rid me of problems within my knee had backfired badly, had actually caused a far more serious condition and major surgery was needed in an attempt to rectify this.

Unicompartmental, or partial, replacements are generally employed in ‘younger’ patients for a number of reasons, most often because the anticipated recovery and final outcome for them is considered far better than with a full replacement, but also because these patients will inevitably need a ‘replacement-replacement’ in years to come – this is most often a full replacement because it is extremely difficult to get ‘a good fit’ with a second partial. Furthermore, younger patients such as myself, who have not developed osteoarthritis at the anticipated age for onset and as part of the natural aging process, pose some additional issues with joint replacement surgery in that they do not necessarily respond to the procedure and treatment in the same way as older patients.

At this point, it was over 30 years since I first developed problems with my knee, and over a decade since I was informed that I urgently needed a joint replacement – the thinking and clinical decisions behind this ridiculous delay are in this previous post. I desperately wanted to have this surgery and totally believed that it would solve the many problems I had been experiencing with Bastard Knee and Stupid Leg. The procedure went ahead as planned, was considered to be a medical success, but sadly it didn’t turn out to be the miracle that I needed or had hoped for.

Thinking about having a joint replacement? Read on…

If you’ve been advised to have joint replacement surgery, listed below are a few thoughts which might be useful to you. I feel it necessary to emphasise two things here: firstly, I was not a typical patient for this surgery, as outlined above; and secondly, the waiting time for me to access this surgery was protracted because I was denied it for many years due to my relatively young age. Consequently, the final outcome is most likely not typical. If asked “Was it worth it?” the answer would be an absolute YES! It enabled me to walk again unaided and rebuild something akin to a normal life. But, it’s wasn’t an easy ride, and for myself, it is far removed from a perfect solution.

The surgery is extremely painful

It was far worse than I expected, and the pain was neither of the type nor the intensity that I had anticipated; I was totally unprepared for this, and really struggled with managing these levels of pain.

The pain is not necessarily where you expect it to be

Judging by the newly acquired scar on the front of my knee, I had assumed that this would be the site of most of the pain, but curiously not. The awful intense aching pain immediately post-surgery is actually behind the joint on the back of the knee, where all your muscles, ligaments and tendons have been stretched during surgery when the joint was opened up.

Lots of medication

Medication is your only escape from the pain, and you will probably be prescribed a lot of pills during the initial recuperation period. You will most likely be taking a combination of SAIDs and strong opioid painkillers, including morphine. Don’t argue, take them, take them all (as instructed, obviously)!! You will probably need to write down what you take in order to keep track of them and the correct dosage.

Movement and mobilisation

You will be expected to start moving the replacement joint as soon as possible; if it’s a knee replacement, the hospital staff will have you on your feet the morning after surgery, if not sooner, and you will work extremely hard to enable the joint to be weight-bearing. You will be provided with walking aids – a walking frame, sticks etc The sooner you mobilise the joint, the better the final outcome. It’s brutal, but necessary.

Physiotherapy

Physiotherapists at the hospital will come to see you and provide exercises to be completed at regular intervals; you will also get a list of exercises to do several times daily after discharge from hospital. The more you do these exercises, the better the final outcome, but… You will also be in a lot of pain, so stretching and exercising your new joint will be the absolutely last thing you want to do. Physio can be a bit of a psychological battleground.

Infections

Infections can occur in the joint in the weeks following surgery; sometimes this can happen during surgery or once you have been discharged from hospital. If you develop an infection, you’ll know about it because you will feel very unwell. Your GP will probably prescribe antibiotics or refer you back to the hospital.

Recuperation period

The official recuperation time is said to be 6-8 weeks following knee surgery, and 4-6 weeks following hip surgery. These are estimates, and everyone heals differently. Interestingly, the assumptions about healing times are often based on age – basically, the younger you are, the quicker your body will heal – and presumably your lifestyle will impact significantly on the time you take to heal. If you are a typical joint replacement patient, you will probably be retired, so can take as much time as you need. If you are of working age, however, the pressure is on to recuperate and return to work asap; in my opinion, these anticipated recuperation periods are massively unrealistic.

Support at home

You will be discharged from hospital when you are barely mobile, usually a couple of days after surgery. YOU WILL NEED HELP AT HOME to help you with basic care, washing, bathing, dressing, and to ensure that you are safe and don’t fall.

Patient age

Yes, back to this yet again! Most patients who have joint replacement surgery are over the age of 60, so if you are a younger patient you will be alongside patients who are a decade or two older than you. The ‘age’ thing is far more relevant in relation to ideas about healing and pain. The assumption at this time (2010), was that because I was significantly younger than the other patients, I would heal very quickly; this is most certainly NOT the kind of pressure you need after having this procedure. In the real world, the opposite happened, and my body took a very long time to heal, far longer than anyone expected; it was around 5 months after surgery that I felt my joint had strengthened and I could actually walk without a stick. Interestingly, more recently, theories and thinking relating to age and healing have now reversed, and it seems to be generally accepted with this kind of surgery, that older people actually feel less pain and heal faster than younger patients, and there are physiological reasons for this.

Your life ‘on hold’

You will have absolutely no idea how much time you will need to recuperate and mobilise fully; how you will respond to the procedure? how well you will manage the pain and medication? whether infections will set you back? how you will deal with the psychological difficulties of this experience? and how much, if at all, your life will change because of the procedure. I would suggest you don’t book any expensive holidays or make arrangements for big family events etc. and please forget “Well, the surgeon said it’d be 4 weeks…” As stated above, my recuperation period was embarrassingly long, I felt really quite ashamed of myself and really frustrated with my situation, perhaps more so because at the time it was expected that I would recover quickly. Also, during this period, I lost my job – a fortnight after surgery, my employer was phoning me & showing up at my house on a daily basis, harassing me about when I would return to work. I hadn’t worked there long enough to acquire any working rights so it was easy enough to get rid of me. Always hated that job anyway…

Stay grounded and realistic in your expectations

Guilty as charged, and gullible as hell, he must’ve seen me coming! I believed everything the surgeon told me – I’d have a leg which would function normally again, no more pain, no more problems, I’d be able to run marathons, etc etc. It’s cruel really, a dose of honesty would have served us both better and I would have been more prepared for a realistic outcome. Stay grounded, people, and anything extra is a welcome bonus 🙂

Other people with joint replacements

I’ve added this in at the end simply because they annoy me so much! In my opinion, joint replacements are not perfect – they are marketed and pushed as a perfect solution, but my experiences of them tells me that they’re not. Maybe because I had to have an unusual one in my knee that the outcome wasn’t as great as someone who has a different, more commonly used prosthesis? Or maybe it’s because I’m honest and not afraid to say that “Yeah, this part is good, this is OK, but this is pretty crap because I still can’t do a, b or c” It’s interesting how many people with joint replacements are very reluctant to admit to having any problems with them, or maybe they genuinely don’t have problems with theirs? I don’t know, but what I really hate is that they challenge you and disagree with you when you dare to suggest that it’s not a perfect solution. Sometimes, I could cheerfully punch such people; they make me feel bad about myself, that my replacement was a failure, maybe my surgeon was a bit rubbish, maybe I should’ve paid to go private, maybe if I’d made more effort with physio… so it’s actually all my fault that my replacement isn’t that great. But I know deep down that that’s all nonsense; it is what it is, not perfect, but it’s a damned sight better than it was before, and that’s good enough for me.

But it’s my body, isn’t it?

X-rays, MRIs, arthroscopies… Phwooooaaaaarrr!! Who doesn’t like a good clinical image of the bits and pieces of the internal workings / failings of your own body? It’s something awaiting-image89 that you rarely get the opportunity to see under normal circumstances. Then, there’s the bits and pieces of bone and tissue that they remove during surgery – who wouldn’t want to have a bit of that and store it in a jar? Well, ok, maybe the bone and tissue thing isn’t for everyone, but I suspect that most people feel some level of curiosity about clinical scans in their various shapes and forms. I certainly do. I love images in all their incredible guises, from fine art paintings to the humble x-ray; they’re often insanely beautiful, fascinating, inspiring things, and clinical images are simply incredible in the level of detail and information that they convey. I could stare at them for hours, and herein lies the problem.

Unsurprisingly, I’ve had lots of x-rays, scans and images taken of my crappy joints over a period of many years. These days, if I request it, I do get to keep a copy the clinical assessment report which lists the most recent findings; this is little more than a few lines, mostly in very large, unpronounceable words and medical jargon intended for professionals, not for the likes of me who are just into x-ray porn. What I really want is to see the image, but this only ever happens when I have a consultant appointment, and even then, I only get to view this for about a minute. I am genuinely fascinated by these images and want to look at them closely, so I deliberately quiz consultants about the images, which buys me a bit more time while I drool quietly to myself.

Tomorrow, I have an appointment with my consultant to discuss the results of an MRI taken a couple of weeks ago. This is my first MRI and I have mixed feelings about this appointment because I suspect that I will be advised that I need further surgery. However, the only part of this that I am looking forward to is seeing my MRI, and I’m rather ashamed to say that I’m actually quite excited at the prospect. Most of the scans and images taken so far have focused on my bones to identify levels of degenerative change; however, an MRI reveals soft tissue, nerve pathways and ligaments, so the resulting image should be really quite amazing. There is also absolutely no doubt in my mind that I will only get to see this image very briefly, and then that’ll be it, it will be quickly filed away and this fleeting moment of opportunity will have disappeared.

In the past, any requests I made about keeping what I perceive as ‘bits of me’, have been greeted with a resounding ‘no!’ and I fail to understand why this should be the case. I kind of get that when I request bits of my body, to some people that may seem a bit strange or macabre even. I readily gave consent for bone removed during my knee replacement surgery to be sent to the local university for research purposes – so why can’t I get to keep a bit of it too, for myself? After all, it is mine, isn’t it? I’m not sure what is going on in my head with this, but these things are somehow important to me – after all, the x-rays, scans, and ‘bits of me’ are precisely that, bits of me, that I feel some level of entitlement to keep or record in some way.

What I really want is to be allowed to keep copies of these images for myself, to look at them closely by myself, not just for their sheer beauty and aesthetic value, but also to gain a greater understanding of what is going on inside my body. I’m not a patient-from-Hades with a fiendish plan to challenge consultants’ opinions, nor am I someone who will get hysterical and start imagining all sorts of potential medical horrors because I’m too ignorant to understand the image correctly. I’m just an ordinary person who likes pictures, and who wants the chance to look at these amazing images of my body at my leisure. I can’t see why this is such an issue, and in these days of electronic communications the cost would be minimal. So, tomorrow I need to be brave and ask again about my rights to have copies of these images. After all, it’s my body, isn’t it? Surely I have more right than anyone to have a damned good gawp at it?

Having trouble getting hold of your prescription opioids?

Nah, thought not… Rather shamefully, it seems far easier getting con146652 my hands on large quantities of opioid analgesics than it is to buy over-the-counter paracetamol.

The opioid analgesics prescribed in the UK are intended to manage pain which is classified as ‘moderate’, so are commonly used to alleviate the symptoms of osteoarthritis. Co-codamol is a compound of paracetamol and codeine, the effect of the codeine having greater impact when absorbed into the body alongside paracetamol, and it is increasingly found in low doses in non-prescription medications such as cough and cold remedies. However, codeine is derived from opium, is a narcotic, is classified as a Class B drug (Class A when administered by injection), and can be habit forming. Over-use or abuse of codeine can cause nausea or vomiting, euphoria, memory loss, lack of co-ordination and fatigue; similarly, if you have used codeine for a long time then stop, you might experience withdrawal symptoms such as irritability, anxiety, insomnia, muscular aches, heavy sweats, diarrhea, nausea, sickness, stomach pains and goose bumps. So what’s the big deal with codeine and codeine-based medications? Judging by the list above (which is by no means exhaustive) it begs the question of why this drug is being used so often, by so many, and despite the Opioids Crisis, why it continues to be prescribed in such quantities?

The body has the capacity to produce natural opioids, however, when levels of pain increase and the body cannot meet the requirements to manage this effectively, prescription opioids fill the gap. They work by attaching to the body’s pain receptors in the brain, digestive tract and spinal cord, imitating the body’s natural neurotransmitters and effectively saturate the brain with dopamine. Dopamine floods the body with feelings of pleasure and well-being, and the analgesic capacity tells your body that there is no pain. So what’s not to like about this? The quantities of prescription opioids within the body is excessive, causing over-stimulation within the brain; a reduction in the levels of pain experienced combined with feeling more than a bit stoned are the rewards for continued opioid use, and herein lies the root problem of opioid dependency.

My own experience of using opioid analgesics goes back at least a decade, which means I’ve had plenty time to weigh up the pros and cons of this specific route of pain management in my particular circumstances. The use of these drugs to manage long-term health conditions is, in my opinion, ridiculous and an inappropriate medical route to pursue. My understanding of why this decision was considered to be ‘the way forward’ was to better enable me to manage my pain symptoms, and as a result to keep me on my feet, enable me to continue working, and to have some level of comparable ‘normality’ in my life for someone of my age. On the surface, this seems all well and good, but in retrospect I feel annoyed with myself for being so naive and not demanding a more pro-active approach.

Opioid analgesics, narcotic painkillers, or whatever name you want to call them by, are simply painkillers with the potential to become addictive. Painkillers do not resolve health issues, they simply confuse your pain receptors into believing that all is well and your brain accepts this. Pain conveys a vitally important message to the brain – it says that something hurts, something is wrong, and because it hurts you should be careful how you use that particular part of your body until it repairs. Opioid Analgesics delude the brain, they tell you that all is fine and groovy, nothing is wrong, your body is in great shape, go and do a spot of parkour if you fancy, all will be good and no harm done.

Due to the habit-forming nature of prescription opioids and the Opioid Crisis, medical bodies are pushing for increased levels of professional awareness, self-awareness of patients, and monitoring of opioid use, as this 2011 NHS article warns. I would certainly agree that the monitoring of these prescription drugs should be increased, and feel that in my case, my usage and changes in my condition were not monitored at all, once again, most likely due to my age; this inevitably led to some of my current health issues.

A cautionary tale for prescription opioid users

A couple of years ago, I found that I wasn’t managing my pain issues, and rather than just experiencing pain in the areas of my body where osteoarthritis is present, I was experiencing it all over my body – sharp, burning, shooting pains down my arms, back and neck, my whole body felt very heavy and achy, and I felt exhausted all the time, so it felt not dissimilar to a nasty bout of never-ending flu. My GP told me to increase my daily dose of opioids – at the time I was taking 25% of my daily ‘allowance’, so was advised to increase as necessary to a maximum of 240mg of codeine daily. The pain was not reduced, it actually increased. My GP then checked for Vitamin D deficiency; I tested as ridiculously low, so she concluded that the pain was caused by that and blasted me with Vitamin D for a couple of months. The pain didn’t go away, and my mobility began to slowly decrease, so I was then referred to the Pain Clinic to seek other possible explanations. They concluded that I did not have M.E, but it was possible that I could be experiencing Fibromyalgia alongside Chronic Fatigue; they also said that they couldn’t treat me further until my depression was under control, so recommended that I went back to my GP. I didn’t, and struggled on for about another 6 months.

One dark winter morning, I was getting ready for work, the pain was awful and I was struggling to get dressed and sorted; my head was confused and messy because I had been taking the maximum codeine dose for several months, and couldn’t remember what medication I’d taken that morning. By the time I got to work, I felt quite ill, very nauseous, dizzy and confused, and somehow figured out that I (like so many other opioid users) had accidentally overdosed, so ended up having to go home again to sleep it off. That night I snapped – what was the point of taking all these potentially dodgy meds if I was still in pain all the time? How were they actually helping me? The answer I came up with was f*ck it! There is absolutely no point in doing this anymore, I’m so totally bombed out all the time and don’t even know what I’m doing. I’m NOT going to take any more opioids! Although in some ways, this was an easy decision to make – ie. what have I got to lose? how much worse can it possibly get?! – I had no idea how I would cope or what would happen. When I first started taking co-codamol, it was such a relief as the warm, tingling soothing sensation slowly spread down my body and took the pain away. That was a long time ago, and sadly, the longer you take opioids the less of that lovely sensation you experience, and the more dependent on it you become; to experience previous levels of pain relief, you need to continually up your dose. It had been a long time, several years, since I felt any obvious benefits or optimism about taking opioids for pain relief, and I had become increasingly concerned that I could become addicted to it, which might explain why it didn’t work for me anymore.

Giving up Opioid Analgesics

The immediate aftermath of this decision to be opioid-free, however, took me by complete surprise. My initial expectation was that the pain would be absolutely unbearable and that I would experience at least some withdrawal symptoms. In reality, neither of those things happened.

The psychological impact was the most obvious and positive change. I felt much better psychologically than I had done for a long time, experiencing a massive surge in the levels of clarity in my thinking processes, more positive energy, and I felt more alert than I had done for several years. I was no longer living within an opioid fog which slowed by brain and dulled my senses.
My physical responses were more complex. For a few days, I actually experienced a lot less pain – the ‘mystery’ pain in my upper body disappeared completely, and I was left with only the anticipated arthritic pain in my lower body. Although unpleasant and difficult to manage, I saw this as a very positive step; what I was now able to feel and identify, for the first time in ages, was where the real pain and problems were, and my situation seemed a whole lot less disturbing than before, when I genuinely believed that my whole body was deteriorating rapidly and had something terribly wrong with it, which nobody seemed to be able to recognise or classify.
Pain levels were more intense and impacted significantly, and my levels of mobility deteriorated quickly since I was no longer taking any analgesics to manage the pain.

The good, the bad, and the downright ugly

I reached several inescapable conclusions about this experience by myself, and the rest after consulting with a GP (a different one, obviously).

ditching opioid analgesics resulted in a real improvement in my psychological well-being; I could think more clearly, experienced an increased level of confidence, and felt empowered to be more in control of my treatment and challenge any issues I had doubts about.
the immediate disappearance of the physical pain in my upper body was evidently caused by the codeine; apparently, I had developed an intolerance to opioids and the pain was my body’s response to that. Consequently, the suspected diagnosis of Fibromyalgia was also incorrect.
my development of an intolerance to opioids was the direct result of my usage and condition not being sufficiently monitored, and left me with a suspected diagnosis of Hyperalgesia, a condition where an individual has become oversensitive to opioids and is no longer able to use them for the purposes of pain relief. This raises a very real problem – what to use for pain relief instead? The options are very few, as pharmaceutical companies continue to flood the analgesic market with opioids. There is no cure for osteoarthritis, and as the degenerative condition increases, so does the pain.
further osteoarthritic degeneration had taken place – this was the real clanger, I had been experiencing so much pain all over my body that I had long since had any idea about what was going on. Once off the opioids, I realised that I had considerable stiffness and decreased mobility in my hips, and sure enough, the x-rays revealed that the arthritis had now spread into both hips and my lower spine, and I urgently needed a total hip replacement in my left hip. I was absolutely stunned at this latest revelation; Opioids make your body blind to pain, the pain of existing conditions, deterioration of existing conditions and new conditions, so it is entirely possible that existing osteoarthritic conditions can advance and spread without you knowing it, particularly if you’re totally bombed out on opioids.

In retrospect, there are clearly lessons to be learned on both sides of this nightmarish scenario. For myself, I need to stop stomping off in a huff, avoiding medical professionals and start pushing them to sort shit out as and when it happens. I have become increasingly angry over the many years of dealing with this, that it is always a case of alleviating symptoms (most often with open-ended prescriptions of opioids) rather than dealing with a root cause and working to halt that as much as possible, with further surgery if necessary. My age has always worked against me in the past, but I am now in my early fifties and therefore rapidly approaching the age bracket where arthritic conditions are a common cause of pain. Also, of course, as someone who has had four decades of problems with the condition, it seems that this is an obvious place to start when looking for clues about the source of pain. Last year’s x-rays revealing that the arthritis had spread shocked me completely; firstly, because (perhaps rather naively) I never expected it to spread beyond my knee, but also because it was accelerating at an unanticipated rate and surgery was unexpectedly and urgently needed.

As for opioids, I see little purpose in prescribing them long-term for someone such as myself. They blinded me and medical professionals to serious, additional joint deterioration which could and should have been identified sooner; they caused unnecessary extra pain because I had developed an intolerance to them, and I now have considerable difficulties managing my pain on a daily basis since so few effective non-opioid alternatives are available. Medical professionals also struggle with this situation – what analgesic medications can they now give me during and post-surgery for pain relief when their preferred drugs of choice are morphine and codeine, and there seems little else available from the pharmaceutical companies?

There continues to be much research into finding effective, non-opioid, analgesic alternatives, and this article is about the kappa opioid receptor. The aim is to develop a safe, non-addictive drug for pain relief, and although research is still in its early stages, there seems to be considerable optimism surrounding this research.

Mind over matter – the power of the depressive voice

painyinyan I no longer believe that I will ever get better. The possibility of this becoming my reality entered my mind a couple of years ago, but this the first time I’ve written it down and I guess that in doing so, it entails an ‘official acceptance’ of it in some way. I’m very aware of how potentially damaging this mindset can be, and am also conscious that this is the product of my ‘depressive voice’.

So what does this apparently simple statement actually mean, to me? It means that I fully expect to be in pain for the rest of my life; it means that no matter what procedures the surgeons perform, the arthritis will always be one step ahead of them and continue to spread to other parts of my body; it means that my mobility will continue to deteriorate and I will become increasingly dependent on other people; it means that I will continue to be potentially unemployable; it means that I will be increasingly marginalised and disenfranchised; it means that I will continue to withdraw from life and isolate myself. It means that despite all of the above being wholly unacceptable to me, the depressive voice has won.

There is general medical consensus that there is a link between chronic pain and depression. It’s hardly rocket science – my body hurts so I feel depressed. But this is depression we’re talking about here, a nasty bastard of a disease, an entire entity in itself, and managing it is a whole different ball game to feeling a bit fed up because part of your body is a little sore. Some medical opinions go further: individuals who experience chronic pain commonly experience anxiety and depression; anxiety and depression disorders in themselves can cause chronic pain; anti-inflammatory medications and opioid analgesics can cause additional pain; as the pain worsens, so does the depressive condition; and orthopaedic trauma, either through injury or surgery, triggers PTSD in 20%-51% of patients. A Canadian study from 2017 recognises this and is calling for a more holistic approach for orthopaedic patients by supporting their mental health both during and post-treatment, not only for the purposes of monitoring their well-being during a period of psychological distress, but also to facilitate a better recovery and improved outcome. In the UK however, the focus remains on degenerative bones and crumbling joints. Despite being asked to complete orthopaedic questionnaires which include a couple of ticky box questions about mental health and depression, no additional support or guidance on managing depression was forthcoming, so I can only assume this information was collected purely for statistical purposes. It remains abundantly clear that a more holistic approach is needed here, a human perspective if you like; I am more than my crumbly crappy skeleton, and my psychological issues over the past couple of years have impacted massively on my ability to manage both my physical condition and life in general. Below is an image depicting areas where I experienced pain yesterday, and rather interestingly, my arthritic problems are only present in my lower body; this is a fairly typical day, so I think it is only to be expected that my mood is currently very low.

It remains disturbing to me that the psychological impact of orthopaedic conditions is briefly acknowledged then so readily dismissed. I firmly believe that the power of the mind far exceeds that of the body, so it is both logical and absolutely vital that psychological issues be dealt with alongside the management of chronic pain. Recently I experienced several ‘meltdown days’, days when I could barely function due to the level of my depression. I found it curious that on one particular day, as the depression deepened, my levels of pain were reduced. I have no idea what other people experience when they have a depressive episode, but in my case it is a complete absence of thought – my head seems empty, it is a numb, dark, empty void, and I stare at blank walls for hours without any awareness of time or whether a single thought might have been created or processed. I see it as my brain going into emergency shutdown, a filtering mode in an attempt to protect me from myself, sifting out anything which might rattle me or upset me, leaving only what is necessary for my physiological survival. Perhaps on this particular day, my brain decided that the endless pain needed to be filtered out, even just for a short time?

As for the depressive voice, I need to find a way of getting it to work for me in a positive way, to help rather than hinder me, and to convince me that some level of recovery is possible, I want my mind to actually support me and be on my side for once. What I need from it are constructive thoughts and patterns of behaviour, some positive input to change my way of thinking and rid myself of the defeatism which consistently takes over my mind. As time goes on, more physical problems continue to emerge; the depressive voice needs to go, or I fear that I will never achieve anything more than a temporary superficial recovery and an increasingly self-imposed isolated existence.