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…

“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.

“Why me?!” Chapter 4: A brick wall and a shiny new knee

cropped-bone-on-bone Fast forward through the first decade of the new millennium and it was a brave new world of possibility and optimism in the world of orthopaedics. Since stomping off (or rather, slowly limping) from my previous consultant appointment a decade earlier, I had made a conscious decision to avoid such things in the future, go into complete denial if necessary, and had taken his parting words quite literally: “Come back when you can no longer walk…”

I was now in my early 40’s, and I hit a brick wall. I’m not especially comfortable with using the word ‘crisis’, but I haven’t yet come up with an alternative which suitably describes the situation of when your life grinds to a halt, and you have no choice but to take action unless, of course, you want to stay there forever. This was my first ‘arthritic crisis’, and rather alarmingly, has not been my last. I was working full-time, did an arduous commute each day, and my limp and lumbering gait were now very pronounced; as the pain increased my mobility decreased, and my mental health deteriorated rapidly. I found it difficult to walk, drive, work, stand, sit, sleep… Myself and Bastard Knee were referred to yet another orthopaedic consultant.

It was immediately apparent that progress and improved technologies had brought about massive change in what was previously a rather dark and dusty world. The consulting room was gleaming, bright and equipped with all sorts of flashy screens and technologies, and the consultant was a rather cool and groovy guy with excellent people skills, who apparently had a particular penchant for playing Pink Floyd very loud whilst performing surgery. This was all a very welcome change from the rather dusty world and balding consultants of the past who muttered to themselves as they scribbled away with their scratchy fountain pens and endlessly rummaged through piles of folders containing yellowing paperwork from decades earlier. I now had an electronic file, and the consultant viewed my x-rays with a strange combination of curiosity and excitement, almost gushing about me being “an unusual case”. He immediately offered to perform an arthroscopy, the purpose being to take pictures inside my knee and check the condition and location of any cartilage within the joint, just to confirm that the best outcome would be a unicompartmental knee replacement on the lateral side of my knee where the cartilage had been removed. I did ask about how long I would have to wait until this could be performed, but he reassured me that the new joint replacements were quite different from those available in the past and that surgery could be performed when it was needed, regardless of patient age. He added that I would be one of the youngest people to have this procedure, which perhaps went some way to explain his evident enthusiasm, but I didn’t feel that this situation was something to be especially proud of; in my head, I was still angry that I had developed an old people’s disease, and only old people got joint replacements. Nonetheless, I was really pleased that I could now go ahead with the much-needed surgery, and fully believed that it would resolve my various pain and mobility issues. The surgery went ahead as planned, but sadly it didn’t turn out to be the miracle that I needed or had hoped for, and the reasons for this will be covered in another later post.

Because the previous age restrictions for joint replacements were no longer an issue, the new surgical procedures and replacements had a huge impact on the number of surgeries performed. Even though I was an NHS patient, both my arthroscopy and replacement surgery were performed in a private hospital, and this practice has continued to the present day. It is possible that the demand for joint replacements is now so high, that the NHS simply doesn’t have the capacity to deal with it so patients are ‘diverted’ to other health providers for their surgery. This continues to be the case now, and the idea of joint replacement surgery, certainly within the UK, has morphed into an efficient and lucrative business.

“Tell me, where does it hurt?”

“Where does it hurt?” and “Can you describe the pain?” seem simple enough questions, but to provide a succinct and objective response consistently evades me. The quiet, pensive, patient expressions on the faces of orthopaedic consultants makes me feel that maybe I haven’t said it right, perhaps have been misunderstood, probably that I haven’t described it sufficiently clearly, and I start to feel nervous, slightly desperate, and persevere by rambling on in an unhelpful or confusing manner.

Describing osteoarthritic symptoms and pain accurately is possibly as challenging as managing the condition itself, and trying to describe both the location and type of pain is quite tricky. The easiest type of pain to describe are the ‘full-blown arthritic burns’, as I will call them in this post (I do have another name for them, which is unsuitable for the public domain). These are nasty beasts which often come suddenly without warning, a tear-jerkingly awful but brief sharp burning sensation in a small and specific area, in my case, usually inside my knee cap or hip; the burning is often a response to specific weight-bearing actions, for example, a sudden high impact movement or using steps or stairs. On days when I’m especially unlucky, they come in clusters. Other types of pain include aches in varying degrees of intensity, but their location is always vague; the aches I experience are usually in the lower part of my legs and ankles, but they feel very deep inside my body far away from the skin, perhaps on the surface or even inside the bone. I find these aches the most psychologically disturbing of my symptoms, they usually last for hours and there is something very dark and creepy about them; they bring with them a real coldness which feels as if the life is very slowly draining out of that particular part of my body. Other common symptoms include an intense soreness or tenderness in specific areas of the body and problems with stiffness; the most difficult time for managing these is usually immediately on waking up, the physical difficulties of actually getting out of bed is often the most challenging and painful part of the day for many people with arthritic conditions.

So, here I am, back in Human Guinea Pig mode and ready to launch into my next ‘investigation’ on myself. Previously, I used a word-cloud programme to take a look at issues relating to osteoarthritis and mental health. Today, I am in the early stages of Investigation 2, testing out a possible way to explain my pain and where it occurs, so that I am fully armed with the necessary information for when I next attend my consultant appointment.

I’m a simple soul who likes pictures to convey potentially complex information. The intention here is to use a visual to record where pain occurs, with additional notes where necessary; I intend to record this for at least a week. My decision to do this is for my own clarity as much as that of my consultant because, rather embarrassingly, since our last meeting, the pain I am experiencing has actually moved, and continues to move to other parts of my body on a regular basis. The ‘plan of action’ discussed some months ago was to investigate further degenerative change and the possibility of nerve damage or trapped nerves, so the fact that the pain is moving about will either support this investigative route, or alternatively could blow it to smithereens and we’ll have to look at other possibilities.

I really like beautiful images, so although drawing a stick-man would suffice for this task, I opted for something far better. The Vitruvian Man. If there is one image in the history of art which really celebrates the perfection of the human form, this is it: the incredible mathematical and relative proportions brilliantly observed and recorded, the geometry, the symmetry, the perfection of design, the beautiful drawing quality itself, the inherent strength and power of the figure, it is gobsmacking stuff! Unfortunately, I will be defacing this image to record the location of my pain – something which I am a bit uncomfortable with (no pun intended) – but am hoping that perhaps the markings will reveal patterns of pain: perhaps some consistencies in the pain, repeated locations of certain types of pain, or maybe patterns relating to a nerve path?

Regardless of the outcome, Da Vinci’s contribution to this is very much appreciated and actually provided me with enough motivation to get this moving, as did Botticelli’s Venus. My consultant appointment is a couple of weeks away, and I am looking forward to presenting him with these and several other pages of legendary art figures – but I suspect that the irony may be lost on him…

Update:

I’ve been recording pain experienced in this way for 6 days now, and the visual below is the result. Hardly what could be described as empirical evidence, but I think it’s an interesting and worthwhile task. What strikes me most is the actual amount of pain I am experiencing at the moment, and by recording it using a static image has surprised me at how much of my body is affected by it. Having said that, what these images don’t record is the intensity or duration of the pain; the lower back pain recorded in every picture is extremely uncomfortable and is my constant companion – it never stops. However, the pain in my legs are cold aches which fade after several hours, and the burning pains are unpleasant but of short duration. I also experienced the excruciating pain of a trapped nerve twice during this period, and some of these images would suggest that at least some of the pain could be following a ‘nerve pathway’. The images are misleading in their implication that I experience all this pain at all times, and that is certainly not the case – the images record what I experienced within a 24 hour period, with some pain being less acute or more fleeting than others. My consultant appointment is fast-approaching and, based on these visuals, I am fully expecting the result of my recent MRI scan to reveal continuing arthritic degeneration alongside nerve damage.

pain-pics

“The feral pile”

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Dogs. I’ve owned them all my life and can’t even begin to imagine how desolate I would feel without one. Owning dogs, or spending time with them, has been scientifically proven time and again to have huge benefits for your physical well-being and an even greater impact on your mental health. So how and why does spending time with dogs (or other furry companions) improve your overall health?

Companionship

Dogs are especially loyal and loving creatures, so offer their owners comfort, reassurance, companionship, emotional and physical security, and unconditional love.

Responsibility and Motivation

Owning a dog brings with it responsibility and motivation – the responsibility for feeding and caring for your pet, and the motivation to exercise it regularly and sufficiently. In fulfilling these responsibilities, you should notice some improvements in your physical and mental health, even if the changes are small at first.

Depression

Walking a dog can increase your physical level of fitness, but also give your mood a boost. Here’s why:

walking releases endorphins, which reduce physical pain and improve your mood.
walking has a calming effect – it can reduce adrenaline levels which, in turn, lessen levels of anxiety and stress.
walking increases levels of seratonin, the ‘happy chemical’ or mood elevator.
walking enables more efficient use of dopamine, a neurotransmitter which signals responses of pleasure and motivational reward.
walking increases your levels of Vitamin D3, which is absorbed directly from the sun; this enables increased seratonin and dopamine release to the brain, and subsequently can elevate a low mood.
walking increases oxygen levels in the body and brain, enabling dopamine receptors to function more efficiently and lift a low mood.

Click here for an article about the benefits of walking and mental health.

Socialising

Walking dogs inevitably leads to meeting other dog owners, and sometimes chatting – usually about dogs! – and occasionally these chance encounters can lead to lasting friendships. Social isolation can be a key ingredient of depression, and it is believed that people who are socially connected are more likely to be mentally healthy. Socialising with other dogs is also good for your canine companion – dogs need doggie friends too!

Click here for a wonderful article, How getting a dog saved my life

“The Feral Pile”

The Feral Pile is not a phrase that you will find in any study about human and canine relationships or behaviour, but it is the way which I describe the most important behavioural aspect to my relationships with my dogs, and why they are so important to me. I think the simplest way to describe it is ‘mutual bonding’ and the behaviours which bring that about. The picture at the top of this post is of my current dog, a golden labrador, who was 5 months old at the time. She had had an unpromising start to her life, and this picture was taken the day I brought her home; she was clearly needy, anxious, in desperate need of reassurance, and we spent our first week together snuggled up in a feral pile on the sofa. She is now a strapping 3-year-old who weighs in at 30 kilos, but we have continued our tradition of spending several hours each day in the feral pile together; she loves the reassurance and attention, and I love everything about it: her scent, her soft velvet fur, her warmth, her rhythmic breathing, even her snoring in my ear, her reassurance, her devotion, and her beautifully gentle personality. Being in the feral pile immediately reduces my levels of stress and I feel much more relaxed, the warmth and softness of snuggling up to her relaxes my muscles and my physical pain seems less, and her gentle breathing has a soporific effect usually resulting in the best quality sleep I’m likely to have that day. Every day, I smile at her behaviour or her expressions and she lifts my mood considerably, which is hugely important since my mental health has been poor for a while now. Yet, despite the obvious mismatch of having a large energetic dog alongside my current mobility problems, she brings with her enormous reassurance, affection and a whole host of other intangible, wonderful things which far outweigh the challenges. If we can’t manage to do something or if it all gets too messy, we stay calm and simply revert to the feral pile until all is well again, and then we try again another day.