“Why me?!” Chapter 8: Shaken, not stirred…

Early in 2018, I learned that the osteoarthritis which had previously taken up residence within my left oafigure knee joint, had spread into both hips and my lower spine. It was sufficiently severe to require an immediate total hip replacement in my left hip. I was extremely shaken by this unwelcome news, and was still struggling to understand how this had happened, and perhaps just as importantly, how this had happened without my being aware of it even by the time when the surgery went ahead. A year on, and I am still rattled by this and have continued to worry and wonder about what could possibly have created such a situation? After all, I’ve spent many years struggling with pain, waited a long time for a knee replacement which offered the prospect of normal levels of mobility and an end to the pain, and yet here I am, after several decades, feeling like I’ve not only made very little progress, but am actually further away than ever in achieving a relatively mobile and pain-free existence. I suppose I’m a ‘logical’ kind of person, one who requires cogent reasons and hard facts to make sense of things, and I have never been able to accept “ah well, that’s just how it is” as any sort of explanation for anything. I decided to write this blog for a couple of reasons. Firstly, to get all this stuff out of me and written down, so I could take a closer look at what had happened and try to figure out why – if I can find the source of the problem, maybe I can find a solution or at least manage the situation better. I really don’t want any more nasty surprises like last year, and by gathering all the information together does it actually make it easier for me to make sense of it all? Secondly, I’m very aware that I have a huge amount of anger about having developed OA, most of which is suppressed, but some escapes into the real world every now and then; I hoped that by blogging I would manage to remove some of this anger, but so far I have found that in writing everything down alongside doing online research, I have actually created a complex jigsaw of events and situations which, at times, actually makes my anger worse.

I had hoped that by now, several months since I started writing this blog, that I would actually have reached a kind of health plateau, or at least a situation where things stabilised a bit, but it seems that that isn’t going to happen any time soon. I would also have expected that now, at the age of 52 and two joint replacements later, that I would see a significant improvement in the quality of my life, that I would have been able to achieve some kind of semblance to a normal life, ‘normal’ meaning that I would have a reasonable level of mobility and independence, however this hasn’t happened and I have begun to wonder if it ever will. I do realise and accept that without the surgery, my situation would be a whole lot worse, but I can’t help wonder why the surgical outcomes aren’t better? It would be blatantly untrue to say that it isn’t worth bothering with the surgery, it IS worth doing, but again perhaps my expectations of it are too high? Perhaps what I’m expecting is something which is not yet achievable, medically speaking?

Something else I’d hoped for by now, was to have reached ‘the present’ in my endless tales of arthritic woe and misery. I had planned on writing about the aftermath of my first hip replacement, which is now almost a year old, and I gather it takes around 2 years for them to heal fully. Sadly, due to various other health issues, I haven’t experienced the slow-but-gradual recovery I’d hoped for, and have been plagued by still more mobility problems and pain issues for the past few months, so haven’t found the time to do that. Also, following several visits to various consultants and specialists over the past few months, we have concluded that it is necessary to now replace my other hip.

So, welcome to ‘my Present’. The pain I have experienced over the past few months has been the worst, most widespread, severe and most enduring. I always find it ironic that whatever the ‘present pain’ is, it always feels as if it is also ‘the worst ever’, however, in this case I would have to confess that it is. For the past few months, I have experienced constant pain – seriously, it is CONSTANT, it NEVER stops, it is hugely debilitating and it is exhausting. There is nothing I can do to escape from it however I sit, stand, lie, elevate various limbs etc, it’s always there; it moves around a bit, but is constantly somewhere in my hips, spine, legs, ankles, anywhere & everywhere below the waist, in fact. What I also find interesting is that although the pain and problems with this hip do have some similarities to the other one, there are more differences and it’s quite a different beast although I don’t know why this should be the case – curious stuff indeed. I can only assume that the pain is constant because the joint is vitally weight-bearing, so however I move or whatever I do, I can never fully remove all the weight from it – after all, that’s its function, its raison d’etre.

So, I’ve reverted to my “going backwards in an attempt to go forwards” mode yet again. The surgery is scheduled for next week; it’ll hurt, I’ll be miserable, I’ll be swearing, I’ll cry a lot, I’ll be cursing the physios, I’ll probably get hysterical a few times, I’ll lose the plot with the meds, I’m bound to have at least one meltdown, and I’ll have yet another big bugger of a scar for my collection. Yeah, feeling pathetically sorry for myself already, so bring it on. Meh…

Hippie Stuff

This post is for those who may be considering having a Total Hip Replacement (THR) and to share my own experiences of that in the hope that it could be helpful to you. I will also write about the similarities and differences between having hip or knee replacement surgery because I think it’s inevitable that I would compare the two.

healthy hip This image shows a healthy, normal hip joint, and if you have been diagnosed with arthritis in your hip(s), the clinician will have noted that rather than there being a nice healthy space in the ball-and-socket joint such as in this image, there will be a narrowing, or if you’re really unlucky, no space left at all and bone-on-bone contact. The arthritis in my left hip was discovered late, too late really, and was immediately classified as ‘severe’ so I’m afraid I haven’t seen any images of the gradual deterioration and intermediate phases which occur; however, what I have seen is an image of my hip from a few years earlier which has been incredibly useful for comparisons of ‘then’ and ‘now’. In my case, my hip changed from something similar to the image above, to something akin to the image below in approximately 5 years. Without wishing to alarm anyone or to incite some kind of arthritic hysteria, I can assure you that this is not the normal rate at which the disease progresses, and the majority of OA sufferers experience a much slower deterioration over a period of a decade or much longer before surgery becomes necessary. It appears that my OA is aggressive, and judging by the flustered responses of specialist clinicians to my test results, I suspect that it is unusual in its enthusiasm and pace. hiprplcmt

If you are an NHS patient in the UK and your x-ray result is of concern, you will most likely be referred to a MusculoSkeletal specialist, who is the stepping stone to getting a referral to a consultant-surgeon. I was annoyed at recently having to go through this process (having managed to be referred directly to a surgeon only the year before) but actually the MSK specialist I saw was amazing – incredibly thorough and helpful in her diagnosis and subsequent medical report. One of the tests which she undertook was called FABER (an acronym for Flexion, Abduction and External Rotation), which the above source describes as “a passive screening tool for musculoskeletal pathologies, such as hip, lumbar spine, or sacroiliac joint dysfunction, or an iliopsoas spasm.” Put simply, a ‘positive’ FABER result means that you have musculo-skeletal problems within one or more of those regions – it’s all about measurements of movement, in my case the test clarified that I had only 90 degree flexion and no medial or lateral rotation. If you are experiencing pain and suspect that your hip could be the problem, the Oxford Hip Score test may be a useful tool to try at home; I only discovered this very recently and have never been asked to complete it at any orthopaedic appointments, so I am not sure how valid the professionals consider it to be. Obviously, the problem with such tests is that all responses are entirely subjective, so it’s best to be brutally honest with yourself about your difficulties and levels of pain. But it is something which you can complete in a few minutes, and I think it could be helpful in either alleviating your fears or confirming that perhaps you should make an appointment to get your hip(s) checked out.

So what exactly is a hip replacement?

Click this link for an NHS video about hip replacement surgery.

And what about the patient perspective?

One of the purposes of this blog is to look at my own experiences of osteoarthritis and the surgery which this has so far entailed, yet something I find extremely irritating is that the focus seems to be placed solely on my physical condition – identifying where the physical problems are, the condition of my joints, is there any cartilage? etc. I always feel cheated somehow that the ‘human perspective’ is at best overlooked, and at worst completely ignored. So, listed below is information relating to my own experiences of these procedures, as a UK NHS patient.

Do I have a choice of surgeon and where the surgery will take place?

Yes. You should receive a letter which gives you online access to book a consultant appointment with the care provider of your choosing.

NHS or private care providers?

Although I am an NHS patient, both my procedures have been undertaken at private hospitals. If you are an NHS patient, no additional cost is incurred. I can only assume that the demand for joint replacements is so high that the NHS can neither meet the demand nor have the number of necessary beds available.

How long will I be in hospital for?

You will be discharged asap after your procedure. You will be encouraged to mobilise asap, prove that your new joint is weight-bearing, that you can walk with sticks, manage stairs, have some level of mobility no matter how minimal, and that you can manage toileting needs before you can be discharged. The discharge rate for hip replacements is fast – for my procedure last year, I was in hospital for around 36 hours. Knee replacements are more complex so your hospital stay could be longer – I was in hospital for 4 days for mine, but this was almost a decade ago so this could now have changed.

What about physio?

I was given a sheet of exercises, to be completed 4 or 5 times a day. The more you practise these exercises, the better the final outcome of your procedure. However, I really struggled with this, the pain was too great due to problems elsewhere within my leg, and after about a month of trying then being nagged or told off because I’d failed again, I felt very depressed about it all and just gave up. Even if you can’t manage the physio exercises, it’s important to keep moving and NOT give in to the massive temptation to bomb out on opioids, lounge around watching TV and eating mountains of chocolate during the long slow weeks that follow surgery. Although I failed gloriously at managing my hip physio exercises, I did try to keep as mobile as possible doing other really basic ‘activities’, such as extremely short-in-distance-but-took-an-absolute-age dog walks, short trips to local shops, practising walking up and down the stairs. The more mobile you are, the quicker you will heal and the better the final outcome. Curiously, I managed the physio much better following my knee replacement – I worked really hard at it, like a really crazy obsessed person and finally achieved an excellent outcome. If you can manage it, the effort really does pay off.

What about driving?

You will not be allowed to drive for about 6 weeks after surgery. Both knee and hip replacement surgeries render your limb too weak to be able to drive safely at this time, and (I think) that your driving insurance is invalid during this period. You will need to find yourself a willing driver to help you with this stuff, and also the joys of getting in and out of a car…

Managing transport / travelling

After both my procedures, understandably, my world shrank. For the initial few weeks, my mobility was extremely limited, I was unstable on my legs, extremely tired, and felt very vulnerable so I only ventured out of the house as an absolute necessity. After my knee surgery, when I was legally allowed to drive again, I bought an automatic car in the hopes that it would make things easier, which it did to some extent; what I didn’t foresee, were the problems I would have actually getting in and out of any car – the car door had to be wide open, and because of the swelling and limited flexion in my knee, I had to kind of slide myself into the seat after putting my surgery leg in first. If you have a Blue Badge and therefore are able to use allocated Disabled parking spaces, this makes life much easier simply because you have the space to open the door fully. Following my hip procedure, travelling was far more difficult, but for a very different reason. Getting in and out of the car was easier than it had been after knee surgery, but I found it extremely painful when the car was moving; I assume that g-force is to blame, and this meant that not only was I very aware of how fragile my body was during these first few weeks, but also it felt as if my whole body was being rattled around in a liquidiser when the car was moving – every turn or bump in the road feels extremely painful and it’s stressful stuff. Although this improves slowly alongside your body healing, it still takes time before it is more manageable, and with me, I think it was around 3 months later that I could cope with it without wanting to cry. As for public transport, there was no amount of money you could pay me to use buses or trains at this time.

How independent will I be?

Not especially, for the first few weeks. When you are discharged from hospital, you will probably have minimal mobility; shuffling around nice wide hospital corridors and user-friendly staircases to prove you are sufficiently mobile is not the same as being at home, and you will need on-going support from family or friends to ensure that you are safe, don’t fall and can manage personal care needs. My main problem both times were stairs and steps – I was surprised to find that my low doorstep was just a bit too high to step over, and the stairs were much steeper than I remembered. Again, knee and hip surgery bring with them different issues – I fell several times at home after my knee procedure, but didn’t fall at all after hip surgery. Personal care issues such as getting dressed can be difficult, and following hip surgery you should not bend more than 90 degrees for the first few months – it’s an interesting exercise to try this out before surgery, so you will realise how much you will need to adapt your movements to manage everyday tasks independently. You will probably also need help in managing your medication; there will be a lot of it at first and it’s strong stuff, it’s a good idea to take it as advised, and also get help from someone to make sure you write down what you have taken and when. The hospital provided me with a few day’s worth of meds, so it’s also a good idea to get organised and have sufficient medication to come home to after you have been discharged; I, rather foolishly, didn’t think about this, so had to spend several hours one day shortly after being discharged, trying to get hold of some more morphine because the hospital only gave me enough for the first 3 days.

The worst day?

The worst time for pain and stiffness depends on which procedure you have. For hip surgery it is definitely the day after you have been discharged. I’m not sure why this is – perhaps the realisation that you are no longer in the safe and protective atmosphere of the hospital, perhaps because all those strong meds they gave you during surgery have worn off, or perhaps that’s just because that’s how it is? After waking from hip surgery, I felt sore but ok and this feeling of “Phew! that wasn’t as bad as I expected!” lasted the next day too, the day that I was discharged. However, the first morning I woke up at home was definitely the worst day, and I felt absolutely battered. Hospital staff are aware of this and it is acknowledged that most people really struggle during their first full day at home. For knee surgery, it was different – the worst day was immediately upon waking from surgery, I’d never experienced such pain before, I didn’t know what to do or how to cope with it, and even though I was still in hospital and on very strong painkillers I just found it so hard to deal with. This was almost a decade ago, and I would expect that things would be different now and much improved.

Hip replacement vs knee replacement

The general consensus of opinion is that hip replacements are a much easier ride than knee replacements, and this is something I would wholeheartedly agree with. The hip surgery seems a simpler procedure, the immediate pain I experienced was much less than with my knee replacement, I mobilised quicker, and was able to do more things independently sooner than after my knee surgery. Knee replacement surgery was (at the time I had mine) a notoriously difficult and painful procedure. I had never experienced any pain like it or since, but I would assume that practices are now much improved since it was around a decade ago. Also, the knee replacement I had was an unusual one (lateral partial) which is apparently a more complex and challenging surgical procedure than the other partials and full replacements, so it could be that the relative rarity of my surgery could account for the difficulties I experienced. Post-surgery knee pain is very specific and localised, it starts immediately after surgery and is more intense than hip surgery pain, but it slowly eases off over a period of weeks or months. I think some of the problems I experienced with the knee surgery was that I wasn’t sufficiently informed about the procedure, recuperation time and levels of pain so I was a bit shocked by how difficult it was to manage.

What about mental health and orthopaedic surgery?

Orthopaedic surgery is statistically notorious for issues relating to trauma, not simply the physical trauma which your body experiences, but also for psychological ‘trauma’ which can occur with surgery. This should come as no surprise to anyone since many people with on-going chronic pain also experience poor mental health and depression, so how would anyone expect us to respond when invasive surgery is performed? For some reason, and I have no idea why this should be, but I do experience some kind of psychological issue with this type of surgery. I feel quite ashamed of myself and I don’t understand what is going on here within my head about this – after all, my knee replacement was long-awaited and much needed, my hip replacement was also essential, both procedures were intended to improve the quality of my life, both physically and psychologically, so what’s not to like? What is there to get psychologically messed up about? This is clearly a big topic for me, I think it best to save it for a separate post.

Scars

The scars are pretty minimal if you consider what the surgery entails. My knee scar is around 5″ long, and my hip scar is around 10″. They are quite neat, and they do fade with time.

Is it all worth it?

In my case, the answer to this is absolutely YES! Without these surgeries, my quality of life would have been very low, and I would most likely be unable to walk by now if I hadn’t had joint replacements. However, they are not like a normal healthy joint and can feel a bit clunky at times, but hey, this is your life and mobility we’re talking about here and if you want any semblance to a normal healthy life, this is the route to take. I would also cautiously add that if you are asking yourself whether to bother having a joint replaced, it is probably too soon to make that decision – put bluntly, if you are struggling to mobilise and the pain is bad enough, you would not even be asking the question, you’d be begging to have the surgery. I would also advise that if you are at all unsure, that you get on the conveyor belt for an MSK appointment asap; NHS waiting times are long in the UK and it can take a while before you get a consultant appointment, unless you are an urgent case. A consultant appointment is simply that – you get the chance to discuss your x-rays, you will be examined for mobility and pain issues and advised accordingly, and the decision to take things further or not is entirely up to you.

“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.

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.

“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.

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.

The miraculous properties of cod liver oil

omega-3-fish-oil-healthy-life

The health benefits of adding cod liver oil to your diet for the purposes of improved physical well-being have been well-documented, but did you know that cod liver oil could also be beneficial to your mental health and well-being?

Cod liver oil is massively nutritious, containing omega-3 fatty acids, Vitamin A and Vitamin D. It is generally recognised as having the potential to provide a variety of health benefits, the best-known being stronger bones, reduced inflammation and less joint pain, but there are also arguments claiming that cod liver oil also improves brain function, can reduce symptoms of depression and anxiety, improves cognitive function and impacts on mood. The arguments for the miraculous properties of cod liver oil are as follows:

Inflammation

Cod liver oil contains omega-3 fatty acids which could suppress the production of bodily proteins which create chronic inflammation. Vitamins A and D possess high antioxidant properties, which can reduce inflammation by impacting on harmful free radicals.

Bone Health

Bone mass begins to decrease at around the age of 30; this can become problematic in later life and the possibility of bone fractures can increase, especially in post-menopausal women. It has been argued that Vitamin D can decrease the likelihood of age-related bone loss because it facilitates the absorption of calcium into the body.

Joint Pain

A variety of studies into Rheumatoid Arthritis and joint pain have revealed that patients who regularly take cod liver oil supplements reported a reduced level of joint pain and were subsequently able to reduce their intake of prescription anti-inflammatory medication.

Symptoms of Anxiety and Depression

Research into the impact of cod liver oil on mental state is on-going and inconclusive; however, what the research does suggest is that there is ‘something’ in cod liver oil which can alleviate symptoms to some extent. It seems more plausible that this is due to the Vitamin D content which, it has been argued, can stimulate the production of hormones such as seratonin, and it is generally accepted that higher levels of Vitamin D in the blood can reduce minor symptoms of depression. Click here for an article on the impact of fish oil and Vitamin D on brain function and mood. It has also been argued that there is a link between chronic inflammation and anxiety or depression, and although some studies claim that cod liver oil could reduce symptoms of low mood, more research is needed before a reasonable conclusion can be reached; although inflammation can decrease and some improvement in mood has been acknowledged, the level of improvement is very small.

Other health benefits

Eye Health: The omega-3 fatty acids and Vitamin A present in cod liver oil have been shown to offer some level of protection against, for example, glaucoma and age-related macular degeneration, by reducing inflammation in the body.

Heart Disease: incorporating omega-3 fatty acids into the diet can reduce the risk factors of heart disease, although it is important to note that it cannot prevent heart disease developing. The presence of omega-3 fatty acids can lower blood pressure, increase HDL cholesterol (the ‘goodie’), prevent plaques forming in the arteries, and reduce the production of triglycerides.

Stomach and Gut Ulcers: results of animal studies are suggesting that cod liver oil could enable the healing of stomach ulcers by reducing inflammation in the gut, and it has also been argued that cod liver oil can suppress genes which create inflammation of the gut. Users of prescription anti-inflammatory medication can be at risk of developing stomach ulcers, as can smokers and individuals who experience acid reflux.

Ok, so how much should I take?

One teaspoon of cod liver oil contains 90% of the RDI for vitamin A, and 113% of the RDA for Vitamin D. Taking 1000mg capsule has long been the advisable daily dose for individuals with arthritic conditions, however, research from 2005 has concluded that higher doses appear to be extremely beneficial to individuals awaiting joint replacement surgery. In this study, the higher dose resulted in two specific changes in the body: firstly, a huge reduction in the production of an enzyme which can cause damage to the cartilage, and secondly, a reduction in certain enzymes which cause joint pain. Click here for this research article.

NSAIDs

Personally, I’m a big fan of anti-inflammatories, and have used them long-term with no problems so far. What I really like about them is that they actually DO something! NSAIDs reduce inflammation in the body, thus reducing the level of arthritic pain, and for me this is extremely important – OK, so the level of pain isn’t massively reduced, but it’s something, it’s physical, it’s real, and it’s progress of sorts. The main reason for this little outburst is that there are so many drugs which DON’T actually do anything for your body – for example, painkillers. Painkillers lie. They lie to your brain, telling you that you have no pain which, to a point, is good because it takes the pain away if only temporarily, but only (and this is important) because you believe it to be so. In the meantime, there is absolutely no progress or healing going on, and in some cases further physical damage is taking place but is unrecognised.

Anti-inflammatories are not a perfect drug, and there are certain issues with their use, especially if it is long-term, as in the case of arthritis. NSAIDs can impact detrimentally on your stomach, causing damage to the stomach lining and are thought to be responsible for the development of stomach ulcers. Therefore, monitoring their use is important and I now am required by my GP to have regular blood tests to check that all is well. However, there are now NSAIDs being manufactured which have a type of ‘coating’ which is said to protect the stomach lining from damage.

Something else worth noting is the impact of NSAIDs on your blood’s consistency and ability to clot. Last year I was taking anti-coagulents after surgery and was not allowed to take NSAIDs alongside these because, as I understood it, my blood would become too thin. Here is an article which reiterates this, arguing that anti-inflammatories should not be taken alongside blood-thinners, and how NSAIDs appear to impact on blood platelets.

I see NSAIDs as the unsung heroes of arthritic pain. They tick over quietly in the background and most of the time you could be forgiven for thinking that they’re not doing anything, but believe me, they are. They certainly don’t wallop the pain in the heroic manner that painkillers do, but I think it is only when you stop taking anti-inflammatories that you realise how much they actually do for you. Following an enforced break from them for 8 weeks last year, I really noticed an immediate difference when I was finally allowed to use them again, and if I ever had to make a choice over using NSAIDs or painkillers, NSAIDs would win every time.