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

following consultant appointment

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

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

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

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

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

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

at the local Medical Centre

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

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

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

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

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

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

back at the hospital again

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

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

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

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

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

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

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

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

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

 

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

 

 

 

 

 

The Yarn Whore

For the past six months, I’ve been knitting socks.  I had heard from various reliable woolly sources that knitting socks was “very difficult” and it was necessary to juggle more than two needles at a time, so despite being an extremely obsessive and socks1experienced knitter, I convinced myself that I wasn’t good enough, or lacked the necessary discipline, or wouldn’t have the patience to manage to make even the most humble of socks – or worse still, manage to end up with a single sock and not be able to persuade myself to make an actual pair.

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

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

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

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

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

For more information about the benefits of knitting, click here

 

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

partial-knee-2In 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 somethingawaiting-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 con146652my 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).

  1. 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.
  2. 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.
  3. 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.
  4. 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.