Deciding when to say when: pain cure? or pain managed?

I think the subject of this post is the singularly most important yet neglected topic in chronic pain research today. When is it time to say “All this looking at pain cure, or reducing your pain isn’t working, it’s time to accept that pain is going to part of your life.” It’s difficult for so many reasons whether you’re the person experiencing the pain, or the clinician trying to help. It’s also incredibly important for everyone including our community.

Cures for pain that persists are not easily found. One possibility is that the underlying disease or dysfunction has not yet been treated – pain in this case is the experience we have when there’s an unresolved threat to body tissues. Find the source of the problem, treat it, and voila! No pain.

Another possibility is that a new or groovy treatment has been developed – something extraordinary, or something that’s being applied to a different problem or something that’s emerging from the experimental phase to clinical practice.  This means clinicians need to have heard about it, maybe will have had to think hard about their clinical reasoning, have developed skills to apply it, and be ready to talk about it with the person they’re treating.

In the case of much chronic pain, pharmacological approaches simply do not work. Machado and colleagues (2009), in a large meta-analysis of placebo-controlled randomised trials, found 76 eligible trials reporting on 34 treatments. Fifty percent of the treatments had statistically significant effects, but for most the effects were small or moderate … the analgesic effects of many treatments for non-specific low back pain are small”, while Machado, Maher and colleagues found that paracetamol was “ineffective” for reducing pain intensity or improving quality of life for people with low back pain, and although there was a statistically significant result for paracetamol on osteoarthritis pain (hip or knee), this was not clinically important (Machado, Maher, Ferreira, Pinheiro, Lin, et al_2015).  Clifford Woolf said “most existing analgesics for persistent pain are relatively ineffective… the number of patients who are needed to be treated to achieve 50% reduction in neuropathic pain in one patient is more than four – a high cost for the three unsuccessfully treated patients and their physicians” (Woolf, 2010).

Woolf’s sentence ends with an important statement: A high cost for the three unsuccessfully treated patients and their physicians. I have emphasised the final three words, because this might be the most difficult to process. It’s hard for clinicians to say “I can’t reduce your pain”, and “there isn’t a cure”. It’s incredibly hard. And it’s perhaps because it’s so hard that I’ve found very little published research looking at the way clinicians go about telling people their pain is likely to be ongoing. It’s like a taboo – let’s not talk about it, let’s pretend it doesn’t happen, after all it doesn’t happen often.  Really?

Amongst allied health (I can’t bear to use the word “non-medical”), and in particular, physiotherapists, there continues to be a push to address pain intensity and (ultimately) to cure pain.  Innovative treatments such as mirror therapy, graded motor imagery, therapeutic pain neuroscience (we used to call it psycho-education in the 1980’s when I first started working in this area), reducing the threat value of the experience have all come into their own over the past 15 years or so. Even long-standing pain problems apparently respond to these approaches – people cured! Who wouldn’t be keen to try them?

Most of these latter treatments are based on the idea that our neurology is plastic; that is, it can change as we change input and thoughts/beliefs about what’s going on.  Unfortunately, the systematic reviews of trials, and at least one “real world” trial of graded motor imagery haven’t shown effects as great as promised from the early research (eg Johnson, Hall, Barnett, Draper, Derbyshire et al, 2012). There are sure to be people who can point to amazing outcomes in the people they treat. I’m certain that it’s not just the “treatment” but an awful lot to do with the person delivering the treatment – and the treatment context – that might make a difference to outcomes.

But where this all leads me to is who makes the decision to stop chasing pain reduction and pain cure? When does it happen? What’s the process? And what if we treatment providers are actually prolonging disability out of the goodness of our hearts to find a cure?

Let me unpack this a little.

In my research, several important factors led to people deciding to begin flexibly persisting (and getting on with life as it is, not as it was, or might be).

• The first was knowing the diagnosis and that it would not be completely cured but could be managed.
• The second, that hurting didn’t mean harm (pain is just pain, not a sign of ongoing damage).
• The third, that there was something important the person wanted or needed to do to be themselves.

There were other things as well, like having a clinician who would stand by the person even if the person didn’t “do as the Doctor ordered”, and developing their own personalised model or explanation for their pain as it fluctuated from day-to-day. BUT the single most important factor was knowing that the problem needed to be managed because there was no cure. Knowing this meant that energy used chasing a cure was redirected towards learning to live well and be the person they were, rather than a patient or being dominated by pain.

Unfortunately, I think that many clinicians confuse the idea of managing pain with that of resignation to a lesser life. Even the wonderful Lorimer Moseley and crew wrote recently that “CBT literature seemed to focus on this idea of ‘pain is now unavoidable so it is now time to learn how to cope with it.’ He goes on to argue that because a CBT approach focuses on thoughts and beliefs (much like Explain Pain does), it’s not incompatible with the idea that the plastic brain can learn to reduce the threat value even further to ultimately “helping them live well with less pain, or perhaps without any pain at all.”

Here’s my concern: Right now there are many people living with chronic pain who have lost their sense of hope. They’ve pursued pain cure after pain cure, and in doing so, they’ve lost normal routines and habits, lost their usual occupations (activities), stopped being around people, stopped working, and have suffered in the true sense of the word – they’ve lost their sense of self. While I applaud the efforts of researchers like Moseley and colleagues, and I think we must continue to seek treatments to reverse the neurobiological underpinnings of pain, at the same time I think we need to look at the psychological and social aspects of our attitudes and expectations towards experiencing pain. And we must think of the negative effects of our emotional response to seeing another person who is experiencing pain.

Is it so terrible to experience pain every day? Speaking as one who does – despite my knowledge of neuroplasticity – my pain doesn’t represent a threat. It’s just an experience. It’s there. I notice it, I can feel it. And the participants in my research similarly acknowledged pain as present – but it didn’t have the emotional primacy that pain can represent before it is explained. In fact, some of the participants said they’d learned important things because they’d had pain. A lot like having a mood disorder (that must be managed), or diabetes (that must be managed), or heart disease (that must be managed), or respiratory disease (that must be managed), perhaps it’s OK to have pain – that must be managed. Because until our research has advanced a LOT further than it has, there are an awful lot of people living with chronic pain, and who will continue to live with chronic pain. And even more sadly, there are an awful lot of people who don’t even get the opportunity to know that it’s possible to live well despite experiencing chronic pain because we (as part of society) still don’t accept that pain can be present without it being a threat.

Sometimes I wonder at our (clinicians and researchers) blind spot. We just don’t seem to be ready to accept persisting pain as something that can be lived with. Is it time to look at our own discomfort with allowing pain to be part of life?

 

Bowering, K. J., O’Connell, N. E., Tabor, A., Catley, M. J., Leake, H. B., Moseley, G. L., & Stanton, T. R. (2013). The effects of graded motor imagery and its components on chronic pain: a systematic review and meta-analysis. Journal of Pain, 14(1), 3-13.

Cossins, L., Okell, R. W., Cameron, H., Simpson, B., Poole, H. M., & Goebel, A. (2013). Treatment of complex regional pain syndrome in adults: a systematic review of randomized controlled trials published from June 2000 to February 2012. European Journal of Pain, 17(2), 158-173.

Johnson, S., Hall, J., Barnett, S., Draper, M., Derbyshire, G., Haynes, L., . . . Goebel, A. (2012). Using graded motor imagery for complex regional pain syndrome in clinical practice: failure to improve pain. European Journal of Pain, 16(4), 550-561.

Machado, LAC, Kamper, SJ, Herbert, RD, Maher, CG, & McAuley, JH. (2009). Analgesic effects of treatments for non-specific low back pain: a meta-analysis of placebo-controlled randomized trials. Rheumatology, 48(5), 520-527.

Machado, Gustavo C, Maher, Chris G, Ferreira, Paulo H, Pinheiro, Marina B, Lin, Chung-Wei Christine, Day, Richard O, . . . Ferreira, Manuela L. (2015). Efficacy and safety of paracetamol for spinal pain and osteoarthritis: systematic review and meta-analysis of randomised placebo controlled trials (Vol. 350).

Woolf, Clifford J. (2010). Overcoming obstacles to developing new analgesics. Nature Medical, 16(11), 1241-1247. doi: doi:10.1038/nm.2230

An allied health response to primary care for musculoskeletal aches and pains

For as long as I can remember, the joke about doctors saying “take two paracetamol and ring me in the morning” has been a pretty accurate reflection of reality – but no more perhaps?

A large review and meta-analysis of randomised placebo controlled trials of paracetamol in back pain and osteoarthritis has found that although paracetamol can provide a limited reduction in pain in osteoarthritis but not at a clinically important level, there is an elevated risk (four times) of having abnormal results on liver function tests (Machado, Maher, Ferreira, Pinheiro, Lin et al, 2015). The meaning of this elevated risk on liver function isn’t clear, but what is clear is the very minimal effect of what has been used as a mainstay drug for two of the most common complaints in the world.

Oh what are we to do? Because if the findings about paracetamol are stunning, add to it the clear evidence of harms associated with nonsteroidal anti-inflammatories, and we have a situation where the two most common front-line treatments for musculoskeletal pain are being strongly questioned. What’s a busy GP meant to do?

As a community, I think health professionals working with people who have musculoskeletal pain need to begin a concerted campaign to show the value of nonpharmacological approaches to managing life with aches and pains. We already have this beginning with some of the physiotherapy social media campaigns – see a physio first! But I think we could add “See your allied health team first”.

What would it mean to see an allied health professional first? And what would allied health professionals need to do to make this a valid option?

I think allied health professionals would need to make some changes to how we assess people presenting with pain – I wouldn’t want to ban the biomechanical, but here’s a question: how well do physiotherapists consider the psychosocial in their history taking? Luckily I don’t need to have the answer because Rob Oostendorp, Hans Elvers and colleagues have done the work for me.  In this study, therapists were observed conducting their first assessment with a new patient experiencing chronic neck or back pain. Their interviews were reviewed against the SCEBS (Somatic, Psychological (Cognition, Emotion and Behaviour) and Social dimensions of chronic pain), and given scores for how well the interviews explored these domains. Perhaps unsurprisingly, history taking for the Somatic dimension (how sore, where are you sore, what triggers etc) was excellent, with 98% including this area. BUT, and you’d expect this perhaps, Cognition was 43%, Behaviour was 38%, Emotion was 28%, and Social was 18%. What this means is that despite the clinicians themselves considering their coverage for all but the social domain as being “adequate”, in reality the only aspect that these clinicians covered well was the most basic area – “what does it feel like?”.

Challenging indeed.

Now, what would happen if we then examined what these clinicians do with that information? Because if we’re not so wonderful at collecting useful information across domains, my bet is that we’re even worse at combining this information to make sense of it – in other words, developing useful formulations.

Unfortunately I don’t have any information on how we as allied health clinicians use the information we collect, but if my experience as an educator and the very limited number of papers discussing formulations is anything to go by, I don’t think we’re doing too well. I suspect we tend to collect information then blithely continue doing what we’ve always done in terms of treatments. And I’m sorry I don’t have the evidence to support my hunch – would someone take this on for a project, please?

I think allied health professionals also need to make some changes to how we present what we do to the general public. While most people in the general public know that physiotherapists help people move, osteopaths are gentle and work with their hands, chiropractic looks after backs and necks – I’m not so sure anyone really knows what occupational therapists might offer, and I’m certain there would be some angst if psychologists were recommended as front line clinicians for musculoskeletal problems!

You see, while we’ve been concerned about a biomedical dominance in musculoskeletal pain, we haven’t been as good at helping the general public recognise that aches and pains are fairly common and often not a sign of pathology. We’ve been pretty poor at showing the value of relaxation, mindfulness and down-regulation as useful ways to deal with pain. We haven’t addressed the need to engage in occupations and activities that are fulfilling and enjoyable and enriching. In fact, I venture to say that we have almost wholly bought into the biomedical model when it comes to how to conceptualise musculoskeletal aches and pains. We are as guilty as anyone for considering an ache or pain as a sign that the person needs to be “fixed” or “mended” or “aligned” or “stabilised”.

I think a more radical approach, and one that allied health professionals can really endorse because there is evidence for it, is that living well involves being fully human beings. That means allowing ourselves to engage in what we love to do, to not only be active but also to relax, to be exuberant and to be peaceful. To think of our lives as a whole, rather than an isolated ouchy hip or knee or neck. And to look to our whole lifestyle as key to living well rather than “treating” the bit that happens to be bothering us right now.

Imagine that – an allied health workforce that puts out the message that life and wellbeing are the products of balancing all the wonderful facets of being human.

 

 

Machado, G.C., Maher, C.G., Ferreira, P.H., Pinheiro, M.B., Lin, C.-W.C., Day, R.O., . . . Ferreira, M.L. (2015). Efficacy and safety of paracetamol for spinal pain and osteoarthritis: Systematic review and meta-analysis of randomised placebo controlled trials (Vol. 350).

Oostendorp, Elvers, Mikolajewska, Laekeman, van Trijffel, Samwel, Duquet (2015). Manual physical therapists’ use of biopsychosocial history taking in the management of patients with back or neck pain in clinical practice. The Scientific World Journal, 2015, art. 170463, doi: http://dx.doi.org/10.1155/2015/170463

Who are you? The effect of pain on self

My client, let’s call him Al, is a plumber. Or was a plumber. He sees himself as a hard-working, reliable guy who takes pride in doing a job once, doing it well, and not stopping until the job is finished. He’s worked for most of his adult life in his own plumbing business, something he’s very proud of. He’s supported his partner while she’s been at home caring for their two now adolescent boys. In his spare time he goes fishing, loves the outdoors and likes to wander the hills whenever he can.

Al isn’t very happy. He’s been told that his back pain, which he’s had for six months now, is not likely to go away. He’s been having treatments from physiotherapy, had a return to work programme developed by an occupational therapist, tried medications and injections but nothing has taken his pain away. He’s slowly stopped seeing his mates, isn’t sleeping well, hasn’t been out fishing in months, and he’s even had trouble keeping from shouting at his boys.

Al doesn’t sound all that different from many of the men I’ve seen in pain management. Some people call him “unmotivated” because he’s stopped thinking about goals for the future, and does his exercises in a half-hearted sort of way. He doesn’t always attend his appointments. It’s hard to know whether he’s actually doing his home exercise programme. A far cry from the “hard-working, reliable” man who runs his own business.

What’s going on? We could say he’s depressed, and maybe he is. But more importantly, why is he depressed? He doesn’t describe his pain as anything more than a 5/10 where 10 is the most extreme pain he can imagine. He’s still getting an income from his worker’s compensation, he’s still in a loving relationship and in their own home. But he’s not a happy man.

We’ve all met an Al, I’m sure. Superficially he looks fine, but a throwaway comment nails it: “I’m just not myself any more, I want things to be normal”.

Self-concept

All of us have an idea of who we are. A self-concept is a set of representations about who we are, what we do, how we do it, and why we do it. We all have several self-concepts – the “actual” self, the “ideal” self (who we would like to be), the “ought” self (the person others think we should be), the “feared” self (the person we really don’t want to be) and so on (Higgins, 1999; Markus & Nurius, 1986). Our sense of self is based on a collection of memories, a pattern of behaviours that we’ve developed and continue to develop as we aim to be the person we want to be.  Our sense of self guides our choices and the way we do things.

What happens when we can’t do things the way we think we “should”, or the way our sense of self would guide us to? Let’s think about this for a minute.

Al is used to getting up early in the morning, usually about 6.00, so he can get out to the site he’s working on that day and begin work by about 7.30. He prides himself on being at work, ready to go, before his apprentice gets there. He’s always organised, got his gear ready and in the truck with a cup of tea all sorted so he can plan his day.

Since he developed his back pain, Al’s had trouble getting out of bed before 8.00. He’s always tired. He’s not sleeping. He’s the last one in the house to get up, and he can’t even get to the work site until 9.00 because his body is sore and he can’t seem to wake up. He’s getting picked up by his apprentice who keeps giving him grief over not having his gear ready in time. He’s not the man he used to be, in fact, he’s become the man he swore he’d never be, a compensation bludger. He doesn’t like who he’s become. He feels lazy and useless.

Achieving self-coherence by re-occupying self

One of the neglected aspects of pain management is how to help someone deal with the changes to his or her sense of self. Life becomes chaotic when assumptions we make about the world no longer apply. The main concern of someone who is learning to deal with chronic pain is how to make life and self make sense again, to regain some coherence.  When they successfully solve this problem, it’s like all the various aspects of “self” have been reassembled. This is usually a new “self”, one that incorporates pain and the things that need to be done to accommodate pain while still expressing important aspects of “who” he or she is.

The process of learning to live comfortably with a new self is, I believe, a process of re-occupying self. Making a new self that feels recognisably “me”, doing the things that make “me” feel like myself, including some of “my” usual standards and attitudes and interests.

Yet what do we so often do when we doing pain management? We tell people like Al to “relax” and “pace” (Al learned as a child that you don’t stop until the job is done). We tell him he needs to move in certain ways (as a plumber? under buildings, in roof cavities, hauling gear out of the truck, carrying it over building sites). We suggest he needs to not do some things (work for the whole day without a break), but ask him to do other things (carry out a set of exercises three times a day). We say he needs to be back at work, but he doesn’t feel he’s pulling his weight.

What can we do?

I think we need to take some time to understand Al and what’s important to him. Not just the occupations (activities) but also the way he does them, and why he does them. How do they contribute to his sense of self? And then we need to work with him to give himself “permission” to do things differently – for a while. It’s like putting on a temporary “self”, a “rehabilitation” self. We can revisit this “rehabilitation” self as time goes on, and help him identify important values and occupations so he can begin to feel more like himself. Perhaps help him develop a new self that lets go of the old “normal” but includes some of the most important values expressed differently. I call this flexibly persisting – as Antony Robbins says, “staying committed to your decisions, but staying flexible in your approach”.

BTW – if you’d like to help me share this concept, you can! The idea of re-occupying self emerged from my PhD studies, and I want to present this at the Pain Science in Motion Colloquium in Brussels at the end of March. If you’d like to help me raise the airfare to get there (and back!), go to Give a Little and my page “Live well with pain”. Every little bit counts! I’ve had some wonderful people help me get almost half the money I need – will you help me get the rest? Thank you!!

 

Beekman, Claire E., Axtell, Lois, Noland, Kathy S., & West, Jaime Y. (1985). Self-concept: An outcome of a program for spinal pain. Pain, 22(1), 59-66. doi: http://dx.doi.org/10.1016/0304-3959%2885%2990148-4

Charmaz, K. (2002). The self as habit: The reconstruction of self in chronic illness. Occupational Therapy Journal of Research, 22(Suppl1), 31S-41S. doi: dx.doi.org/10.1177/15394492020220S105

Hellstrom, Christina. (2001). Temporal dimensions of the self-concept: Entrapped and possible selves in chronic pain. Psychology & Health, 16(1), 111-124. doi: http://dx.doi.org/10.1080/08870440108405493

Higgins, E. Tory. (1999). Self-discrepency: A theory relating self and affect The self in social psychology (pp. 150-181). New York, NY: Psychology Press; US.

Markus, Hazel, & Nurius, Paula. (1986). Possible Selves. American Psychologist, 41(9), 954-969. doi: dx.doi.org/10.1037//0003-066X.41.9.954

What’s in a name? Why getting a diagnosis of chronic pain is important

Sticks and stones my break my bones, but words will never harm me – yeah right! Words have power when we’re looking for treatment, or we’re giving treatments for pain. I’ve written about the staying power of language used to describe back pain here.

But let’s look at a more distinct problem: diagnoses.

Diagnoses are, in the words of Annemarie Jutel, “the classification tools of medicine…” Sociologically, they segment and order bodily states, indicating what is and isn’t normal. “A diagnosis is integral to medicine because it organises illness, identifies treatment options, predicts outcomes and provides an explanatory framework (Jutel, 2009). ”

Diagnoses also give people permission to be ill. Being diagnosed replaces mystery with — well, something else depending on the label.

Getting a diagnosis indicating that chronic pain was not likely to be alleviated was a striking finding from my PhD research, and supported by numerous qualitative studies. What I found, and others too, was that once a person had been told that their pain wasn’t likely to go, that the disease was chronic and couldn’t be cured, it wasn’t long before people began to think about life with pain rather than searching for a cure.

It’s interesting that although I could find a lot of research looking at how doctors let people know they have cancer, or a life-limiting illness, I couldn’t find anything to show how doctors give someone the news that they have chronic pain. Anecdotally I have heard that doctors don’t like to tell people their pain is likely to be there “forever”, but I couldn’t find anything in the journals to explain what it was like to be the doctor in this situation. And yet it must happen – or does it?

Doctors use diagnoses to predict, to organise, to tell them what to do next. Chronic pain, because of its complex and disputed nature (is it illness? is it disease? is it physical? is it mental?) is one of those labels that violates these principles. A diagnosis of chronic pain, in many cases, means the doctor has no more treatment ideas, or at least, a very limited repertoire.

Let’s look at this from the point of view of the person living with chronic pain. For probably four or five years this person will have been looking for answers. Initially he or she will have been given some sort of diagnosis “low back sprain” or “whiplash”. This may have been extended and refined to become “z-joint dysfunction” or “disc bulge”. Maybe this will have been added to with names like “trigger points” or “myofascial pain”. Even “anterior pelvic tilt” or “muscle imbalance”. Perhaps “kinesiophobic”. Findings on imaging will have been negligible – or pointed to with a flourish: “There! There is your problem”.

With each label, a new set of predictions is made. “If you do X exercises, it will come right”. “Here, let me do Y procedure and you take this medication, and you’ll be fine”.

And each time, the person hasn’t responded. The feelings of hope go up with a new diagnosis, then plunge to the depths as the new treatment doesn’t work.

At the back of the person’s mind is the suspicion that this pain isn’t really going to go away. But it’s not until someone “official” makes a diagnosis, confirming the prognosis, that her or she can put away the ideal of “going back to normal” and begin to figure out how to be a person-in-pain rather than a person waiting for a cure. Because until someone official sanctions this suspicion, there still is this sneaking hope that maybe, just maybe, a cure for this pain will be found, if only they get the right diagnosis.

What makes it so hard for doctors to give this diagnosis?

I haven’t identified anything definitive, so this is speculation, but here goes.

Chronic pain is a disputed disorder. It lives between physical disease and mental illness. Often no physical cause can be found, and because of the legacy of Descartes, an assumption is made that therefore it must be “mental” or at the very least “biopsychosocial”. But not biopsychosocial in the way that I understand it, more of “psychosocial-because-I-can’t-find-the-real-problem”.

I also think doctors (and other health professionals) have a hard time admitting they can’t fix something. It’s difficult to say “here’s the boundary of medical science”. This is why so many people spend their lives looking for cures for cancer, spinal cord injury, rheumatoid arthritis, multiple sclerosis etc.

I think it’s emotionally demanding work. To tell someone “you have this chronic pain, you’ll need to learn to live with it” can provoke anger, grief, despair, distress. That’s not easy – especially if you’re a doctor who is a little fearful that he or she might have missed something. “What if there really is something treatable?”

It’s also an invitation to a long-term healthcare relationship. People with chronic pain don’t go away, they’re not palliative care. To some GP’s, people with chronic pain are SO difficult to deal with. They turn up at all hours, they’re distressed, they’re depressed, they’re needy, nothing works. Not the kind of patient a GP really wants to deal with.

Finally, I think it’s very difficult to be a GP who sees people with chronic pain because, seriously, what can you do for them? There are very few places for people with chronic pain to be referred. Few treatments. Nothing is very effective.

It’s like opening Pandora’s box. Once a diagnosis of chronic pain is made, this person will need to take time to look at their life and make changes. That’s terribly challenging work. Not really what a GP’s practice is for. Making life changes is personal, individual, takes time and people often fail and need to repeat the process. This is the nature of chronic disease management – it’s not about medication, it’s about examining and exploring what will help this person feel well.

And what did my research show? That those practitioners who did the “little things” like personalising an exercise plan, like agreeing to stick with the person as he or she finds ways around or with the problem, who phoned or sent a text to see how the person was getting on – these made all the difference.

So, one more piece of the puzzle of helping people live well despite their pain is letting them know they have chronic pain, that it won’t go away completely, and conveying your belief that they have the resources to live well and you’ll be there beside them. If that’s not all about a therapeutic relationship, then I don’t know what is.

 

Engel, George L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196(4286), 129-136. doi: http://dx.doi.org/10.1126/science.847460

Jutel, Annemarie. (2009). Sociology of diagnosis: a preliminary review. Sociology of Health & Illness, 31(2), 278-299.

Sticky back beliefs

I get excited when I can write about New Zealand research! Especially when it’s done by a nice guy like Ben Darlow.
Ben’s just completed his PhD looking at the effect of what we say on people’s beliefs and behaviours when they have low back pain. And believe me, it’s not pretty! I think it’s David Butler from NOI who described the concept of “sticky” words, or words that have great power to influence beliefs about pain, and Ben’s research absolutely supports this.

What Ben and his colleagues did was survey 1000 New Zealanders using a postal survey. He used the Back Pain Attitudes Questionnaire (Back-PAQ), and, with a response rate of 602 (pretty good Ben!), worked to establish the relationship between attitudes and beliefs and (1) back pain experience and (2) health professional exposure. Respondents were from the New Zealand electoral roll, so were 18 years of age and older.

Unsurprisingly, Ben found that 87% (95% CI 84% to 90%) of people had experienced low back pain – yes, it’s very common – and that 27% (95% CI 24% to 31%) were experiencing back pain at the time of the survey.

Now, here’s the tough stuff: While 76% of people responding to this survey thought that their back was “one of the strongest parts of their body” and 78% thought that their back was “well designed”, and enormous 89% thought that their back was easy to injure and 95% believed that they could injure their back if they were not careful.

No wonder people rush off to see a health care provider when their backs hurt! And no wonder many people are too scared to move when they’re sore.

Worse than this, however, were the findings that 99% thought that good posture was important to protect the back, and 97% believed that they needed strong muscles. 94% of respondents believed that it was not safe to lift without bending the knees.  Thank YOU Mr Precious McKenzie and the ACC “Don’t use your back like a crane” messages from the 1980’s and 90’s!

Of course, just because people believe this does not mean they actually try to keep “good posture” or “strengthen muscles” or even lift with bent knees – but it goes to show how pervasive these erroneous beliefs can be in the general population.

One interesting finding that I think gives us a bit of hope: people who had been to see a health professional were more likely to believe it’s OK to remain active despite pain. Praise be!

What worries me is that public health interventions to promote remaining active despite back pain are few and far between. People still believe their backs need protecting, yet they can look at pictures of people doing amazingly strenuous activities with flexible and strong backs without reflecting that their own backs could be just as strong and flexible. Please oh please can we begin to recognise that backs were meant to be flexible, move and bend and twist and give us an enormous range of positions from which we can do things! And please, can we stop telling people they need to “lift properly”??!

Darlow, B., Perry, M., Stanley, J., Mathieson, F., Melloh, M., Baxter, G., & Dowell, A. (2014). Cross-sectional survey of attitudes and beliefs about back pain in New Zealand BMJ Open, 4 (5) DOI: 10.1136/bmjopen-2013-004725

Don’t worry, be happy: Could optimism counteract negative effects of pain?

Warning: there is an earworm contained in this post!

How on earth could anyone be happy when they have pain, huh? Well, more about that in a minute, first let’s look at this interesting study from Maastricht University by Jantine Boselie, Linda Vancleef, Tom Smeets and Madelon Peters.

We know that having chronic pain reduces a person’s ability to undertake complex cognitive tasks, particularly those that involve making decisions or problem solving. People become overwhelmed, fatigued and then perform poorly when they need to maintain concentration when they’re experiencing pain, and researchers have found that this is, at least in part, because pain demands attention. More than this, self regulation, or the ability to modify thoughts and behaviours in order to achieve what is important, can become depleted over time, compounding the original loss of capacity. It’s enough to make you feel just a bit unhappy!

These researchers investigated whether optimism might (a) be able to be induced in people who are currently experiencing pain, and (b) might be able to reduce some of the fatiguing effects of self-regulation depletion. This is based on the notion that people who remain optimistic keep persisting with tasks even when the going is tough. They also investigated whether experimental pain has a direct effect on self-regulation (well, actually, executive task performance which is in turn affected by self-regulation status).

Once again, healthy undergraduates were the participants in this study, so for what it’s worth, these are people who are warped enough to participate in a pain study, and who are generally well. It’s also an experimental pain, so probably doesn’t have the same effect on people as chronic pain, but then again, it’s probably one of the few ways to carry out this kind of research.

There were four conditions: (1) pain plus optimism induction; (2) no pain plus optimism induction; (3) pain without optimism induction; and (4) no pain and no optimism induction. The pain induction was a cold pressor test

Yes, that’s ice. 2 degrees C. For a maximum of 3 minutes. Ouch.  This is what participants were told: ‘‘The aim of the task is to submerge your right hand in this cold water tank for as long as possible until you cannot
take it anymore. When you cannot take it any longer, you are allowed to remove your hand from the water. Try, however, to hold on as long as possible.” They weren’t told of the maximum time limit.The optimism induction was taken from the “Best Possible Self” technique developed by King, while the neutral or control condition was simply writing about a typical day.

All the participants were asked to complete a working memory test (the operation-span task).

As with most studies of this type, every participant also completed a set of questionnaires, to help determine some of the characteristics that might be associated with their ability to do the task, or influence the outcome.

What did they find?

Firstly, they found that the optimism induction did have an effect. That’s good – people can indeed feel more positive and optimistic if they imagine themselves succeeding.

Secondly, they found that people who went through the cold pressor test did, in fact, report more pain. Whew! That’s good.

They also found that irrespective of whether the participants went through the optimism induction, or the neutral writing task, they reported the same pain intensity. So – it’s not possible to “think yourself pain free”, at least, not in this study.

Now for the good stuff: using ANOVA (Yay! ANOVA is awesome! Read the link if you want to know more about the maths), the researchers found that there is an interaction between optimism and performance on the executive task, in the presence of pain. In other words, when a person experiences pain and has not participated in an optimism induction, their performance on the executive task is poor. If they’ve participated in an optimism induction, their task performance did not suffer.

What this means

Well, bearing in mind that this is an experimental study, so we can’t translate directly to clinical practice for people who have chronic pain, what it shows is that pain degrades performance, particularly complex executive functioning. IT also shows that people who can become optimistic don’t show this kind of performance degradation.

Optimism is a complicated construct. Some people appear to be more cheerful, happier, more likely to think they’re doing well, and this seems to be their normal state. I’m not one of these people! However – it’s been shown that people CAN increase their sense of optimism by doing certain things, such as imagining themselves succeeding and doing well, feeling grateful for what they have in life, “counting blessings” and so on  (Meevissen, Peters, & Alberts, 2011).

The authors of this research suggest that these findings might be important for people who have chronic pain. We know that chronic pain depletes self-regulatory functioning. We also know that people with chronic pain can become more optimistic if they use something like the Best Possible Selves induction on a daily basis. The argument is that perhaps, by using an optimism induction, people with chronic pain might be able to mitigate their self-regulatory depletion.

I’m a little less optimistic (heh! heh!), but I do think there’s some merit in looking at this further.

I wonder what would happen if we focused on helping people identify some of the positive aspects of having chronic pain. And yes, there ARE some positives.

When people with chronic pain successfully manage their pain, demonstrate courage, personal strengths, planning and problem solving ability. In bucketloads. They become capable of navigating through healthcare systems. They learn more about themselves. They become skilled at stress management, relaxation, exercising and delegating. They develop greater awareness of what is a priority in life. They recognise that energy is a precious resource – and they get good at allocating that energy where it matters the most to them.

More than this, we as health professionals can help people be more optimistic by focusing on what they want to achieve despite pain. We can help people recognise that they are making progress, developing skills, becoming their own pain experts. We can guide them to appreciate what they have, rather than what they do not have. This reminds me of coach John Wooden’s quote: “Do not let what you cannot do get in the way of what you can.”

Could we do more to show how a life with chronic pain CAN be good?

Meevissen YMC, Peters ML, Alberts HJEM. (2011). Become more optimistic by imagining a best possible self: effects of a two week intervention. Journal of Behavioral Therapy and Experimental Psychiatry, 42: 371-8

 

 
Jantine J.L.M. Boselie, Linda M.G. Vancleef, Tom Smeets, Madelon L. Peters (2014). Increasing optimism abolishes pain-induced impairments in executive task performance Pain, 155 (2) DOI: 10.1016/j.pain.2013.10.014

Using the Chronic Pain Acceptance Questionnaire

Over the past few months I’ve been using the Chronic Pain Acceptance Questionnaire (CPAQ-8) as part of a battery of questionnaires used at intake and outcome measures.  Along with the CPAQ-8, we use the Tampa Scale for Kinesiophobia, the Depression Anxiety Stress Scale, the Pain Anxiety Symptoms Scale, the Pain  Catastrophising Scale, Pain Self Efficacy Questionnaire, and Pain Disability Index.

The CPAQ-8 consists of two subscales: Pain Willingness and Activity Engagement.  Together they measure “acceptance” or psychological flexibility associated with chronic pain.

Let me pull this apart a bit.  Pain Willingness refers to how prepared a person might be to experience an increase in pain so they can get something important done.  For example, I love to dance and I’m prepared to have an increase in pain when I dance (and afterwards) because of the buzz I get from the shimmy.  We probably all willingly experience pain to get a flu jab, or to stand in a queue to get tickets to a really great concert, or to carry a child who is too tired to walk.

Activity Engagement refers to how actively involved a person is in activities that are important – things like getting on with life, taking care of responsibilities, making plans for life that don’t include getting rid of pain.  I’m sure anyone who has worked with people who have chronic pain will have seen people who have put life on hold for sometimes years in their search for something to get rid of pain, who have turned the search for pain reduction into their reason for living.

I wanted to include this measure because of the mounting evidence that acceptance of pain has a strong relationship with things like mood, disability, confidence and so on, so it’s been really interesting to begin to use this tool clinically.

Before I proceed with the following example, please remember that case vignettes I share are based on real people with details changed to protect privacy!

Let’s call him Wayne.  Wayne has had a major mountain bike crash resulting in multiple fractures of his pelvis, lower leg as well as his right arm and shoulder.  He’s had his pain for four years, and has had several surgeries to firstly fixate his lower leg fractures, then to remove the pins and plate, then to remove the pins that were inadvertently left in place.  His main pain is his lower limb and he has been told it is complex regional pain syndrome – although technically it doesn’t have all the hallmarks of full-blown CRPS.  Whatever the diagnosis, he now has allodynia (pain on what is normally nonpainful stimuli – for him, it’s pain on the touch of fabric, when the breeze blows over his leg, water when showering etc), he has hyperalgesia (increased pain to what is normally painful input – when he bumps his leg, if he scrapes it), his leg aches at rest, and gets more painful when he walks for any further than a few meters, and he finds walking over rough ground is next to impossible.

Wayne has seen a lot of clinicians for his pain, including his surgeon, anaesthetists who have tried various infusions, physicians who have tried medications of all sorts, physiotherapists who have used TENS, mirrorbox, and functional restoration.  Wayne is not happy.  Nothing has helped.  He’d really like to have an amputation because he’s talked to other guys with similar injuries who have had an amputation who say they can now “get on with life”.

Wayne feels like his life has stopped since his accident.  He’s gone from being more than busy running his own business, involved in adventure sports, being in a good relationship, planning for children – to waiting, being dependent on compensation payments, and unemployed with no sporting outlets, and his relationship is foundering.

When I reviewed Wayne’s questionnaire responses, several things stood out: his DASS wasn’t elevated suggesting he doesn’t view himself as low in mood or stressed or anxious; his overall PCS was in the average range – but his Helplessness subscale in that questionnaire was very high, so while he may not feel that he catastrophises, he does acknowledge feeling there is little he can do about his pain.  His Pain Self Efficacy Questionnaire was slightly lower than average, so maybe he didn’t feel particularly confident about doing things despite pain; and on three of the subscales of the PASS his scores were below average, with only his Cognitive Anxiety subscale being elevated – but it was very high, so maybe he finds it difficult to “think straight” when his pain levels are intense.

On the CPAQ-8, his Pain Willingness was very low, in the 25th percentile.  At the same time, his Activity Engagement was in the average range at around 44th percentile.  These two measures combined tell me that Wayne’s not yet ready to accept living a different life from the one he’d pursued before his mountain bike smash.  His main focus is on not having pain while his activities are aimed at finding ways to avoid having pain.

Where do we go with this?  I’d like to start working on whether his current strategies are working to give him the life he really wants.  What he seemed to value before his crash was being outdoors, having a sporting lifestyle, getting into adrenaline-pumping high adventure living.  Is trying to avoid pain helping him live his values?  Is he willing to bring his pain with him while he does some of the things he loved? Can he make room for his pain to be present as he takes steps towards the life he used to have?  Can I, as a clinician, help him recognise how his old skills and bravery might help him live well despite his pain?
Fish, R., McGuire, B., Hogan, M., Morrison, T., & Stewart, I. (2010). Validation of the Chronic Pain Acceptance Questionnaire (CPAQ) in an Internet sample and development and preliminary validation of the CPAQ-8 Pain, 149 (3), 435-443 DOI: 10.1016/j.pain.2009.12.016

“It’s there and I’m stuck with it” – chronic knee pain after knee joint replacement

I share an office with an Emeritus Professor of Orthopaedic Surgery.  He snorted at me one day, and showed me the stats from our national joint register database where I saw that while the main reason given for revision of a total hip joint was dislocation, and pain was the sixth most common reason given; in the case of revision of knee joint replacements, persistent pain was the most common reason given.

Some studies have shown between 6 – 30% of people receiving total knee joint replacements have ongoing pain months after their immediate post-surgical recovery.  With knee joint replacement such a common surgery for osteoarthritic knees, and some reports of up to 33% of the adult population having OA of the knee, that’s a lot of people who continue to have pain!

It’s not clear why some people go on to develop chronic pain after surgery, but some vulnerabilities include having had persistent pain in the past, having psychosocial factors present such as unhelpful beliefs (hurt = harm) or depression, anxiety or other psychopathology, and having other unhelpful health habits such as smoking. It’s certainly an aspect of post-surgical pain that I’m interested in because of the large number of surgeries that are performed – and the relatively high rate of dissatisfaction with the outcome (one study estimated 1 in five people were not happy with the outcome, and satisfaction with pain relief varied from 72-86% and with function from 70-84% for specific activities of daily living, Bourne, Chesworth, Davis, Mahomed & Charron, 2010).

How well people accept, adapt to, or cope with persistent pain after a total knee replacement varies.  In a study by Jeffery, Wylde, Blom, and Horwood (2011) qualitative methodology was used to begin to understand how people live with pain when the ‘fix’ they were hoping for doesn’t work out as well as they wanted.

These participants were recruited 12 months after TKJR, a procedure they’d had in the UK’s National Health Service.  They all reported moderate to severe pain (as part of another research study), and had not had revision surgery.  Because of the methodology employed, quite a small group of participants were interviewed (a total of 28 were interviewed until ‘data saturation’).  Data saturation, in this case, occurred when interview transcripts had been coded using thematic analysis, and no new codes emerged.  (Thematic analysis has some similarities with grounded theory, btw, but differs in that isn’t a complete methodology)

Cutting to the chase, several themes emerged from this analysis:

1. The degree of acceptance or adjustment to ongoing pain wasn’t related to the degree of pain experienced
2. Adjustment or acceptance depended on various factors including whether they were better, or worse off since surgery, as well as the input pre- and post-surgery by the surgeon
3. Participants reported they felt abandoned by surgeons – and discussed the kinds of support they would have liked

It’s important not to over-interpret the findings from this study, but I did think it interesting that about half of the respondents didn’t appear overly concerned about their pain – the authors of the study thought this indicated acceptance.   These participants said things like

“. . .it’s just a case of you’ve gotta face up to it and you’ve gotta get on with life and you’ve gotta accept it” (John, age 74 years).
“. . .Once again, it’s part of my life, you know, I just don’t, I don’t think about it much. . .” (Phyllis, age 81 years).

The other half of the participants were not as accepting, and said things like

“Depressed, totally depressed, sad, miserable, charred off, all the things that go with that that you can think of” (Dennis, age 59 years).

“. . . I just don’t know what to do with it.. . . I was in so much pain I said to my husband, and it’s only him I’d tell, I wouldn’t tell the family, I said if I don’t do something I shall, well I shall jump off the bridge” (Sally, age 75 years).

The important point was made by the authors: the degree to which people accepted their pain was almost always related to “…individuals’ perceptions of improvement or deterioration in circumstances since their TKR. Those perceiving an improvement in pain or functioning expressed little distress and a more accepting attitude.”

One of the other studies I looked at while researching this post was a paper by Riddle, Wade, Jiranek and Kong (2010) which identified that pre-surgical pain catastrophising predicted post-surgical pain outcomes.

I wasn’t surprised at this – it makes sense that someone who catastrophises is likely to (a) be predisposed to having an over-active amygdala which will influence the way in which the whole sensitive nervous system responds to a planned insult to the body and (b) also interpret post-operative pain in an equally alarmed way.  This doesn’t bode well for post-surgical recovery involving mobilising on a painful and possibly swollen knee, and especially in any hospital system that wants people discharged as soon as possible so the bed can be available for someone else.

We need to be cautious, though, about the way the Riddle, et al., study is interpreted – conclusions we can draw from many studies such as the Bourne, et al., (2010), Jeffery, et al., (2010), and many non-joint-replacement studies on back pain and disability show that it’s  the distress, or how well the person adjusts to having ongoing pain, and the impact that this has on function, treatment seeking and well-being in general, not the pain intensity that seems to matter.

Returning to the Jeffrey, et al. (2011) study, presurgical preparation by the surgeon seemed to play an important role in how well people accepted ongoing pain.  Those that had been advised that pain is likely seemed to view pain as normal, and were therefore more able view the pain as able to be tolerated.

Where am I going with this? The main points I want to make are these:

• post-TKJR pain is common, with up to 30% of people continuing to have pain for 12 months after surgery
• persistent pain is the most common reason for revision of TKJR
• the degree of pain is not directly related to distress or function
• there are several vulnerability factors that can be identified before surgery that are correlated with post-surgical pain
• at least some of these factors can be addressed before surgery, while how we respond immediately after surgery can also have an impact

Maybe one of the best ways we can help people cope is to inform people prior to surgery that persistent pain afterwards is common, therefore not an indicator of something awful – then after surgery, give people with risk factors such as catastrophising, health anxiety, distress, low mood and limited social resources adequate and appropriate chronic pain self management sooner rather than later.

And perhaps surgeons could remember that surgery is not a quick fix for up to one third of their knee joint replacement patients.

Bourne, R. B., Chesworth, B. M., Davis, A. M., Mahomed, N. N., & Charron, K. D. (2010). Patient satisfaction after total knee arthroplasty: who is satisfied and who is not? Clinical Orthopaedics & Related Research, 468(1), 57-63.

Jeffery, A., Wylde, V., Blom, A., & Horwood, J. (2011). “It’s there and I’m stuck with it”: Patients’ experiences of chronic pain following total knee replacement surgery Arthritis Care & Research, 63 (2), 286-292 DOI: 10.1002/acr.20360

Riddle, D. L., Wade, J. B., Jiranek, W. A., & Kong, X. (2010). Preoperative pain catastrophizing predicts pain outcome after knee arthroplasty. Clinical Orthopaedics & Related Research, 468(3), 798-806.

Opportunity for a conversation

I had a wonderful discussion with another occupational therapist about the profession’s response to the earthquake.  “How”, she asked, “Can occupational therapists from the other end of the country help those in Christchurch?”

To further this discussion, I’ve added a new page to my blog for people to contribute their thoughts about how occupational therapists can aid in the recovery process for people in Christchurch.

Feel free to contribute, comment, say your piece – and even if you’re not an occupational therapist, but you have some thoughts about how occupational therapy as a profession might be able to help, please add your comments too.

Go here for the page…

After quake aftermath

Once again I’m lead to pondering the different ways my situation has affected me, and what might be helpful to mitigate some of the less frequently mentioned aspects of coping in a disaster.

Like many people, I’m still managing with quite limited power, water that is a trickle (not enough pressure to fill a toilet cistern let alone the hot water cylinder!), and the hassles of finding a supermarket and shops that are open, a petrol station before I run out of gas, and ways to dispose of human waste matter safely.

I posted before about the loss of cues that usually help me to maintain my normal routine.  With the loss of these cues, and changes to my usual routine, as well as the inevitable anxiety that comes with repeated aftershocks (Is that a truck going by or an aftershock? When will this aftershock stop? Is that crack in my driveway getting bigger? What about the one in my wall?), it’s no wonder that now, 13 days after the quake, I’m feeling fatigued.

Now while some people would argue that I’m somewhat inclined to be over-active (One medical report written about me after my concussion described me as having a ‘frenetic’ level of activity!), I generally like to have a routine.  I like to shop in the same place, with a list, on the same day every fortnight.  I like to go to the same service station, use the same route to and from the places I go.  My daily activity pattern is similar from day to day.  I find this helps me maintain a sense of security (no, I’m not obsessive about it!), and it helps reduce the amount of brain power needed to make decisions.  This is not what is happening right now! I’m starting to get tired.

And my thoughts turn to the people I work with, people with chronic pain.  While some have routines that serve them well, many don’t.  Some are too active in parts of the day, slumping into a ‘bust’ period at other parts of the day.  Some are quite chaotic and don’t have a regular routine at all.  Others are inclined to stop altogether.  Many, in response to stressors, find their pain flaring up and have trouble thinking clearly to organise their response to daily demands.

I was handed a leaflet prepared by the NZ College of Clinical Psychologists in response to the Christchurch Earthquake.  (Go here for their page for the people of Canterbury) The leaflet reminds people to maintain, amongst other things, routine and says ‘familiarity is comforting’.  It’s true.

It also says stay connected (we need each other),  save your energy (keep if for important things), lifestyle (balance is healthy), safety (protect yourself in every way).

I totally agree.

What I wonder is whether the people who seek our help, particularly people compromised by chronic pain with its associated fatigue, reduced cognitive capacity, influence on mood and anxiety and sleep, can put this advice in place.

What can we do after an event like this to support people with chronic pain?  I see an enormous amount of effort being put in place to support the immediate needs of people around me.  While not all the efforts are as coordinated as I’d like (not a portaloo in sight in my street, despite five households of folk in their 80’s, while a colleague who lives in an area with water and power has THREE of the darned things within 100 m of home!) those basic concerns are being addressed.  There is a concerted effort by the clinical psychologists to establish an acute stress response service.  There is counselling for people.  There are resources for people with disabilities who need help with environmental modifications. 

BUT – and you knew there would be one –  nothing about HOW to maintain routines, how to stay connected, to save your energy, to maintain a healthy balanced lifestyle or to be safe (emotionally and physically).  And not a lot for the weeks and months ahead of us all when we’re feeling fatigued, grumpy from poor sleep, dealing with cold and wet weather and poor roading and limited consultation from Powers That Be.

This is a call for occupational therapists, in particular, to begin thinking about ways to proactively engage with vulnerable people in the community to help return some control and routine to lives disrupted by not only disaster, but pain as well.  And no, I don’t mean focusing on patients, or people who have already been identified as having disabilities or special needs, or even those who go out and look for help.  This is a time to be positive about preventing loss of those things that maintain self efficacy and internal locus of control in people who are vulnerable.

I don’t think GP’s centres are always the best place for this kind of help – after all, people who are vulnerable may not be the same people who seek help.  I think of the households of elderly folk down my street – none of them have sought help.  We need to move beyond thinking in ‘health = medical’ and into ‘health = living’.  People with pain often don’t look for help, hence my PhD. 

How could we do this kind of wellbeing work? I think the Welfare Centres that we have established all around Christchurch as part of the response to this quake could do with an occupational therapist who could be available to talk with people about how to retain their routines and habits.  Then I wonder if supermarkets and pharmacies and shopping malls might be the next best places to set up shop.  Posters perhaps.  In libraries, pubs, cafes, and most particularly, takeaway shops.  Maybe leaflet drops in neighbourhoods. 

What do you think?