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.

“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

Osteoarthritis and Mental Health

This post is a continuation of the static post which can be found on the Mental Health page where I was undertaking an experiment to examine the potential relationship between arthritis and psychological well-being, using a word cloud programme to create an image using text. A week has now gone by, I have recorded 12 words or phrases each day relating to the question ‘How do I feel today?’, and this is the resulting image:

wordle-wk1-generic

This image is what I would describe as a ‘generic’ image to reveal the symptoms and emotions I have experienced over the past week. Word cloud programmes, by default, recognise text as individual words rather than as a complete phrase, and the larger the text, the more frequently a specific word appeared in my lists – for example, the largest words, such as ‘pain’, ‘back’, ‘stiff’, ‘sore’, etc appeared in my list several times, and in various combinations or phrases. Conversely, the smallest words appeared once only. This is all well and good, and provides an overall generic view of what I was trying to capture by doing this experiment. Evidently, the physical symptoms of my arthritic condition dominate in this image, but it is also interesting that several words relating to mood appear in moderately-sized text.

In this second image, I have tweaked the word cloud programme so that phrases are ‘read’ by the programme as complete words – in other words, ‘lower back pain’ will be read as one complete word. This provides a much more specific image:

wordle-wk1-specific

Interestingly, the words ‘low mood’, ‘sore back’ and ‘cold’ are now the most frequently occurring words and therefore appear in the largest text. Although the word ‘pain’ no longer dominates the image, it occurs several times in medium and smaller text, but this time specifically relating to the type of pain I experienced: ‘back pain’, burning pain’, ‘hip pain’, ‘sharp pain’, etc. What this image also reveals is the extent to which symptoms of low mood and depression appear and how they seem to be as prevalent an issue as the physical symptoms themselves. Additionally, I believe that these images provide a valuable insight into how exhausting it is, both physically and mentally, to experience an arthritic condition.

A couple of additional thoughts relating to this experiment and the resulting images.

Firstly, at the time of writing, it is a typically cold and damp January, and as arthritis sufferers are well aware, this is the absolutely worst time of year for us regarding our experiences of pain and is also the most problematic with regard to managing our pain and symptoms adequately.

Secondly, although I am firmly of the belief that osteoarthritis and reduced levels of mental well-being are intrinsically connected, I would also argue that low mood and symptoms of depression cannot be solely attributed to arthritic conditions, and that there are many other factors at play in our lives which influence our moods and well-being. Having said that, however, I have been extremely pleased to discover that during my medical appointments over the past couple of years, arthritis sufferers are now routinely asked to complete mental health questionnaires. I am assuming that this is an extremely positive step forward in better managing arthritic diseases – after all, how can individuals experience chronic pain on a regular basis, without also experiencing low mood and symptoms of depression?