disability

georgina-sky

End-of-year musings


It’s my last post for the year. It has been an extraordinary year, lots of surprises, shocks and enough excitement for anyone! I’m not even going to start on the political changes, here in NZ we’ve had yet another major earthquake, excitement as ACC (our national accident insurer) sets up new pain service contracts (with a LOT of people who haven’t been involved in pain management before… there’s an experiment in the making!), and continuing road cone carnage on the streets of Christchurch.

On the pain news front, I can’t think of any incredibly ground-breaking news – although one medic advised that “Virtually all cases of low back pain can now be diagnosed definitively by criterion standard methods as to source and cause.” That same medic also argued that a paper by Maher, Underwood & Buchbinder (2016) on non-specific low back pain, published in The Lancet, represented “the views of non-evidence-based troglodytes who (a) have apparently not read any scientific papers since 1966, and (b) have vested interests in “managing” non-diagnosed patients so their practices remain busy and they reinforce each other’s views that the burden of low back pain cannot be eased.” I’ll leave the critiquing of that view to those with more time and energy than I have!

It’s also been a year in which various commentators have critiqued the “biopsychosocial model” as it’s applied in musculoskeletal pain.  Some have pointed out that this is an unscientific model, it’s not a theory that can be tested and therefore can’t point to “truth” or whatever approximation we can currently identify. Others have argued that by adopting this framework, practitioners must either be versed in “life, the universe and everything” – or perhaps become exactly what advocates of this approach decry: reductionists. I’m not sure I follow this argument, but those that raise it are intelligent, articulate and far more thoughtful than those who believe that Maher, Underwood & Buchbinder are “troglodytes” or have “vested interests”.

I continue to hold that a biopsychosocial perspective explains more, and is of practical use when we consider the various factors that might influence why this person is presenting in this way at this time, and what might be done to reduce their distress and disability. Here’s my take.

Biopsychosocial model

When we look into the original biopsychosocial model, we need to understand the context in which Engel first developed it. He was a psychiatrist, and at the time psychiatry was under threat from psychologists in particular, who were strongly advocating that many mental illnesses were actually “problems of living”. Things like alcohol abuse, forms of mood disorder, relationship issues and the like were seen as disorders influenced by learning and environment rather than biology. Psychiatrists were perhaps on the way to being sidelined from the very area in which they claim expertise. Engel, influenced by general systems theory and cybernetics, proposed a way for psychiatrists to remain relevant: look at the person as part of a wider system in which each element in the system could influence and be influenced by the next. Engel used this approach as a way to frame conversations with the patients he saw – attempting to understand how and why they were seeking help, and especially, attempting to understand the person and his or her priorities. I think that’s admirable.

How the model has evolved since then is an interesting tale. I first encountered the model during my occupational therapy training, where it was a foundation to viewing people-in-context. It was presented as a bit old hat (I started training in 1979), and was replaced in my profession by Gary Kielhofner’s Model of Human Occupation. This model similarly draws on general systems theory, and argues for the relevance of volition and habits as well as capacity from a biological/performance stance to undertake occupation and of course, contexts such as environment which includes the social environment. MOHO incorporates much of what we consider to be biopsychosocial – in fact, occupational therapy as a profession is based on the idea that people actively engage in purposeful and meaningful activities (occupations) that are formed out of the affordances available to them by virtue of biology, psychology and social elements within an environmental context.

So what?

For a model, or theory, to have value it needs to offer something that existing models or theories don’t. It needs to be more parsimonious (make fewer assumptions), explain more (be more consilient), hold together with existing knowledge (cohere), and predict more (Thagard, 1978).

For a clinician, a theory must also be useful in terms of explaining why this person is presenting in this way at this time, and directing what can be done to reduce distress and disability. Why these questions? Because people actively make decisions to seek treatment. They evaluate their experience in light of their past experiences, prevailing community beliefs about the trajectory of their problem, family influences, and yes, legislative influences. These are possibly more important than the biology of their problem – because we’re not going to treat someone who doesn’t believe they have a problem!

As clinicians I think we need to ponder exactly what we consider to be “treatment”.

When my fracture is reduced and immobilised, that is “treatment” – but it’s not actually ‘healing’ my bones, it’s actually up to my body to do the work. What immobilisation does is create an environment in which my body can heal itself. But the problem of a broken bone is not “treated” just by immobilisation. Treatment has to include the rest of my recovery – and involve prevention strategies too. My recovery will need to include restoring function. And some of that restoration will be by guiding me through various movements that increase tissue tolerance as well as my confidence that my limb will support me. My recovery also has to include me understanding and learning from my experience – will I jump off that cliff again? Will I leave the toys all over the floor again? Will I walk on a slippery path again?

I think clinicians simply create an environment in which people can recover. And we need to go beyond measuring range of movement or strength to establish that recovery has occurred. Recovery isn’t just about returning to “normal” whatever that is. It’s about moving beyond this interruption and into new possibilities and new challenges. It’s really about being able to be who we really are. While that’s primarily the person’s own responsibility, our job as clinicians is to create an environment where it’s possible. While a biopsychosocial model/theory/framework makes life complex, using this approach allows us to be aware of more of the factors relevant to recovery and growth than simply looking at people as if they’re bits of meat, bone, and juice.

In the new year

I’ve been blogging since 2007. In that time I’ve written over a thousand posts all on the topic of pain. Almost all of my posts are on the theme of how we can remember that we are working with people. Other human beings who have their own thoughts, beliefs and priorities. Humans who make sense of their situation as best they can. People who, like us, hold cognitive biases, and feel emotions, and get stuck, and hold values. My real focus is on how we can integrate these things into clinical reasoning – because until we do, we’re ignoring what matters most to the people we seek to serve.

 

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

Maher, C., Underwood, M., & Buchbinder, R. (2016). Non-specific low back pain.  The Lancet. doi:10.1016/S0140-6736(16)30970-9

Thagard, P. R. (1978). The best explanation: Criteria for theory choice. The Journal of Philosophy, 75(2), 76-92.

pretty-bright-yeah

When do we need to say we’ve done enough?


This post is food for thought for both clinicians and people living with pain. It has come about because of a conversation on Facebook where some clinicians felt that people with pain are only being offered the option to “learn to live with pain” when their pain intensity could either be reduced or go completely.  And this conversation is one repeated countless times around the world when those living with persistent pain seek help for their disability and distress.

I’m going to declare my hand right now: I think a the problem in chronic pain management isn’t that people get offered “pain management” or “learning to live with pain” or “accepting pain” too often – I think it’s not happening often enough, nor soon enough. But let me unpack this a little more…

We know that in New Zealand at least one person in every six lives with chronic pain that has gone on for more than six months (Dominick, Blyth & Nicholas, 2011). We also know the seven day prevalence of low back pain in New Zealand is 35% (men) and 48% (women) (Petrie, Faasse, Crichton & Grey, 2014).

Treatments for painful conditions abound. From the simple over-the-counter approach (medication, anti-inflammatory creams, hot packs, cold packs) to hands-on therapies (massage, osteopathy, chiropractic, physiotherapy), to exercise therapies (Pilates, core strengthening, gym programmes, spin classes, walking, exercise in water), and finally to the multitude of invasive therapies (injections, neurotomies, decompression surgery, fusion). There is no shortage of treatments that aim to get rid of pain, fix the problem and get life back to normal. And for the most part these treatments provide modest improvement in both pain intensity and functional gains. For low back pain it seems there is no single wonderful treatment that works for everyone – hence the proliferation of treatments! (cos if there was a single treatment that worked, we’d all be offering it – like we do with a broken bone or appendicitis).

Here’s a question: if pain “management” (ie helping people learn to live with their pain) was the main offering to people living with pain, wouldn’t there be a heap of places to get this kind of treatment? At least in New Zealand there are relatively few pain management centres although there are many, many places to go for pain reduction.

I’ve tried to find studies looking at how people are told they have persistent pain that won’t be cured. Strangely, I have had incredible difficulty finding such studies. They may be there in the research literature – but they’re fairly uncommon and hard to find. And given how poorly low back pain guidelines are followed despite being promulgated since at least 1997, even if there were studies examining the best way to convey this news, I’d be surprised if anything was routinely incorporated into clinical practice.

So, in my opinion there are many more clinicians offering to help reduce pain than there are those offering to help people “learn how to live with pain”.

I was asked recently “when you do decide to stop pursuing pain reduction?” I think I said “it’s ultimately the decision of the person living with pain” – but it’s complicated by the way we as a culture perceive this option. I think most people would be horrified to think “I’m going to have a lifetime of living like this” when our beliefs about pain are influenced by and attitude that “pain = suffering”, “pain is unnatural”, “pain is a sign of something badly wrong”, “pain is something to get rid of”. I know when I was told “I’m sorry but there’s nothing more we can do for your pain” I was terribly upset thinking I had a lifetime of feeling awful to look forward to! I was 22 and had low back pain that would not go away after 18 months. I’m now 52 and I still have pain – but I can tell you that I have done almost everything I’ve wanted to including SCUBA diving, tramping, fishing, dancing, working full time (overtime), and parenting.

When do we begin to think about living with pain rather than curing it? I think we need to take a hard look at what this sentence means.

Firstly it means living. Life continues whether we’re feeling like we’re moving forward, or we’re putting things on hold to pursue a particular goal. Life doesn’t actually stop – but the things we want to experience, the things we want to do change over time. Our focus at the age of 22 is quite different from our focus at age 52 – and I hope it will change again at age 82! We don’t get to hit the replay button and live life all over again. We get one shot at it. This could feel quite awful if we’re contemplating a life where looking for pain relief is our primary goal – especially when that process involves an endless round of hope then despair as treatments are tried – and then don’t quite work out. Even the process of looking for treatments is slow, fraught with anxiety, and it eats up time in a week. For me, taking time out from living to pursue a treatment that may work means a process of weighing up the costs against the benefits. The costs include time, energy, emotional investment in the result, and the discomfort of the treatment itself. The benefits? Well, that depends.

The second part of that sentence is “with”. Living with pain. To me this means establishing my willingness to experience something I don’t enjoy – and believe me, I’m not a fan of pain! If all I have to look forward to is pain, pain, pain I’m not keen on doing it. BUT I am keen on living and bringing pain along with me (because frankly, my pain is coming along for the ride anyway). Living with pain to me means making room to experience pain fluctuations while doing things that bring value and meaning to my life. It means I ache – but I have a beautiful garden. I have sore legs – but I’ve been dancing. I have an aching back and neck and arms – but my house is clean. Here’s the thing: even if I didn’t work in my garden, dance or clean my house I’d STILL be sore! And I’d be bored, feel like I hadn’t achieved anything, and would have had to ask other people to help because many of those things still need doing.

The thing is, pain ≠ suffering.

When do we make a decision to stop pursuing pain reduction? Well, if I’m honest I’m still on the lookout for something that will help reduce my pain. And I think anyone who does live with persistent pain would agree that we don’t really want to have this experience, just like people who have cancer don’t want it, or diabetes or stroke or any of the myriad other chronic conditions humans are prone to getting, especially as we age. When asked, I’m sure most people with chronic pain would say “Yes” to pain reduction as a goal. BUT, and this is important, living life as fully and richly as we can is just as important.  I would bet that anyone with any of those chronic conditions would also just love to have them cured too.

But pain is a funny thing, there are myths and unhelpful beliefs coming from clinicians and our cultural norms about pain being a bad thing that must go. Compared with the beliefs and attitudes about other chronic conditions, this is unhelpful. We don’t find health professionals constantly pursuing treatments to “get rid of” diabetes, the focus is on management. And we accept that people who have cancer may choose to no longer accept treatment – and we support them by providing good hospice care. How often do people with chronic pain get (a) support to make a decision to live with their pain and (b) support to learn to do this well without feeling like second class citizens who have failed. We even have a group of clinicians calling people who haven’t responded to their treatments “failed back syndrome” as if the person’s back has failed rather than the treatment failing.

What makes me decide to pursue a new treatment that promises to reduce my pain? Well, it has to fit into my life. It can’t interfere with what’s important to me in terms of time, energy or discomfort. The odds need to be pretty good for me to even look at it – I want to see more than a single research paper showing its effectiveness. I would have to trust the clinician, and they’d have to respect me and my lifestyle and priorities. I’d want to make sure that clinician was going to stick with me and help me decide whether it’s worth doing. I’d want to see that the treatment would help me achieve my goals and priorities – otherwise I’m not really interested.

Is this because I’m weird (say yes!)? Or that I have less intense pain than other people? (nope, because you can’t compare my pain with anyone else’s, and because pain intensity ratings are strongly influenced by distress, mood, anxiety, how much pain interferes with life, attention, culture yada yada yada (Linton & Shaw, 2011). I think it’s because right now I’m too busy living, I get more joy and satisfaction from doing things that make me feel like myself. But remember I’ve been doing this since I was 22. And it’s a process. And I’m weird. I am a pain geek.

The thing is, unless clinicians promote living well with pain as an equally valid option to trying to get rid of it, people will continue to think that it’s impossible to have a really good life unless their pain is gone. And that, to me, is a tragedy, because we only have one life to live.

 

Dominick, C., Blyth, F., & Nicholas, M. (2011). Patterns of chronic pain in the New Zealand population. New Zealand Medical Journal, 124(1337), 63-76.

Linton, S. J., & Shaw, W. S. (2011). Impact of psychological factors in the experience of pain. Physical Therapy, 91(5), 700-711. doi:10.2522/ptj.20100330

Petrie KJ, Faasse K, Crichton F, Grey A. How Common Are Symptoms? Evidence from a New Zealand National Telephone Survey. BMJ Open. 2014;4(6). doi: 10.1136/bmjopen-2014-005374.

Shebadog

Self-managing chronic pain


I have long been a proponent of helping people who live with pain to take control of their situation and actively self-manage as much as possible. My rationale has been that people who feel they are in control of some parts of their life are more likely to feel confident when their pain flares up, or when they have a life set-back. Today I took a second look at some of the papers on self-management published over the past few years, and I think it’s time to be a little critical.

The first issue to deal with is defining self-management. To me, self-management means knowing as much as possible about the health condition (whatever it is), knowing as much as possible about various treatments, working hard to learn and integrate ways of coping so that I (because yes, self-management is something I use for my fibromyalgia) can do the things I most value. By doing this, I can be more like who I want to be, rather than being defined by my pain, or what other people expect from me. But, self-management isn’t nearly as clearly defined as this in many people’s minds.

Here’s one definition “We defined self-management as the strategies individuals undertake to promote health (e.g., healthy living, exercising), manage an illness (e.g., manage symptoms, medication, and lifestyle changes), and manage life with an illness (e.g., adapt leisure activities or deal with losses caused by illness)” (Audulv, Asplund & Norbergh, 2012). Morden, Jinks and Ong (2011) found from a study of individual’s perceptions that managing chronic conditions is not solely related to medical recommendations and that self-management is central to maintaining a sense of ‘normality’ in everyday life or to reasserting one’s position in the social world when living with a chronic illness and demonstrating competency from a moral perspective.

Interestingly, a definition from COPD management describes self -management as “… programmes that aim to teach the skills needed to carry out medical regimens specific to a long-term disease and to guide behaviour change to help patients control their own condition and improve their well-being”(Effing,  Bourbeau, Vercoulen, Apter, Coultas, Meek, et al.2012). The distinction between chronic pain self-management and other chronic illness self-management lies in the need to address broader “living” issues rather than just learning to “carry out medical regimens”. And that is both the problem and the distinction between chronic pain self-management and other chronic disease self-management approaches.

Let me unpack this: For people living with COPD, or diabetes, there are critical medical management practices that need to be learned and integrated into daily life so that the underlying medical condition doesn’t get worse and lead either to complications, or even early death. The focus on self-management in these situations seems to be on the medical tasks that must be undertaken. The end results are often measured in terms of reducing the number of extreme events – like having hyperglycaemia, or being admitted with a chest infection and needing oxygen.

Now if I turn to the qualitative literature on self-management in chronic pain, what is very obvious is that self-management isn’t about the medical procedures that must be followed. It’s far more about living life – and integrating ways of getting to do what’s important without too many flare-ups that get in the way of doing these things. In fact, Morden, Jinks & Ong (2011) found that in people living with knee osteoarthritis, self-management wasn’t something people identified with – what might have been classified by clinical people as “exercise” or losing weight or keeping active weren’t thought of as “self-management” by people living with knee OA. They thought this was “just getting on with it”. I particularly liked one comment : “because people perceived their activities to be an integral part of their daily routine they were not surfaced as deliberate action.” In other words, when people focus on living life, coping strategies become habits and routines that are secondary to the doing of life.

Mike Nicholas and colleagues have looked into coping and self-management extensively as part of ongoing research associated with the Royal North Shore Pain Management Programme. they were interested in whether it’s possible to find out if adhering to strategies introduced within a programme was predictive of outcome: in other words, did people who strongly adhered to what they learned during a programme ultimately gain better quality of life, lower pain, less disability and feel better? Surprisingly, they did – I say surprisingly because in a couple of meta-analyses (for example Kroon, an der Burg, Buchbinder, Osborne, Johnston & Pitt, 2014; Oliveira, Ferreira, Maher, Pinto et al, 2012) self-management approaches made very little, if any, difference to pain and disability both over the short and long-term.

What does this mean? Well, quite apart from the blurry definitions of self-management, and the lack of standardisation inside self-management programmes, I think we need to ponder on just what we’re asking people to do – and how they (we) regard the strategies we hope people will develop. Cutting to the chase, in chronic pain management we risk people knowing “about” strategies, but failing to adopt them in daily life because we haven’t really thought about daily life and what this is to each individual. When I think about the vast number of changes to self-concept that chronic pain wreaks on people, I think it’s hard to be ready to adopt these new techniques until “who I am” is included in the mix. Maybe one reason for the modest improvements after self-management is that we’re not thinking about self-identity and values and that these need attending to so that using coping strategies is worthwhile. It’s yet another reason I think occupational therapists offer a great deal in chronic pain self-management – who are you? what do you want your life to stand for? what things do you do (or want to do) that makes your life yours? Finally, to paraphrase as my colleague Ben Darlow, living with low back pain (read: any chronic pain) means balancing the need to minimise pain fluctuations with the things that make life worth living. That’s what I call “flexibly persisting”.

Audulv, A., Asplund, K., & Norbergh, K.-G. (2012). The integration of chronic illness self-management. Qualitative Health Research, 22(3), 332-345. doi:http://dx.doi.org/10.1177/1049732311430497

Effing, T. W., Bourbeau, J., Vercoulen, J., Apter, A. J., Coultas, D., Meek, P., . . . van der Palen, J. (2012). Self-management programmes for copd moving forward. Chronic respiratory disease, 9(1), 27-35.

Morden, A., Jinks, C., & Bie Nio, O. (2011). Lay models of self-management: How do people manage knee osteoarthritis in context? Chronic Illness, 7(3), 185-200.

Nicholas, M., Asghari, A., Corbett, M., Smeets, R., Wood, B., Overton, S., . . . Beeston, L. (2012). Is adherence to pain self-management strategies associated with improved pain, depression and disability in those with disabling chronic pain? European Journal of Pain, 16(1), 93-104. doi:10.1016/j.ejpain.2011.06.005

Oliveira, V. C., Ferreira, P. H., Maher, C. G., Pinto, R. Z., Refshauge, K. M., & Ferreira, M. L. (2012). Effectiveness of self-management of low back pain: Systematic review with meta-analysis. Arthritis care & research, 64(11), 1739-1748.

duck duck go

Pain exposure therapy – what is it?


Thanks to an enquiry on my About page, I’ve been prompted to read a little about pain exposure therapy. This is a little-known approach to helping people with CRPS type I (the type that is NOT associated with a peripheral nerve injury. Type II is the same phenomenon but IS associated with an injury to the nerve.)

Graded exposure is an approach commonly adopted to help those people who are afraid of, or phobic about, a “thing”. Most of us will know about spider phobia treatment where people are progressively encouraged to stay with feelings of anxiety and distress while being shown and eventually handling a spider. Graded exposure has also been used to help people who are fearful of experiencing painful flare-ups and therefore avoid doing things – it’s been a successful approach especially for people who report high levels of pain catastrophising (or, as I like to put it, “freaking out” at fluctuations in pain). I’ve reported on graded exposure several times in my blog over the years, and use the approach myself with great success. BUT this approach requires some foundation skills for both the clinician AND the person living with pain.

Before I delve into the skills I think clinicians and people living with pain need, let me outline the treatment and it’s rationale.

The basis for this treatment is the idea that if pain is going to be present, and it no longer represents an indication of the state of the tissues, then avoiding movements is no longer necessary for tissue healing. At the same time, people generally don’t want to do things that flare pain up, and so they tend to avoid those movements. The issue is then much more about how to gradually get used to the fluctuations in pain (ie freak out less) while at the same time beginning to do things with the painful limb. Supporting this approach is some basic science that suggests the less we use an area of our body, the more distorted our brain’s representation of that area becomes.

So, after discussing basic information about pain and tissues, in pain exposure therapy, clinicians work together with the person living with pain to:

  • begin doing movements that are usually avoided
  • avoid responding to any behaviour that is usually associated with experiencing pain – things like grimacing, groaning, saying ouch, and rubbing the area
  • provide progressively more demanding input to the painful area despite changes in reported pain
  • encourage increased normal use of the area within daily life – eg holding onto bottles, cups, utensils, putting shoes and sox on, walking normally

In addition, clinicians use this type of therapy also prescribe many exercises to be carried out frequently through the day despite painful flareups. Sometimes clinicians will restrain the other unaffected limb so that the painful limb HAS to be used just to get things done.

Some of you reading this blog will be reminded of the work by Doidge in which a very similar approach is used during rehabilitation from stroke or traumatic brain injury – by using the limbs in a normal way, new neuronal pathways are developed, allowing the limb to eventually return to pretty much normal function.

Others of you will probably be saying “how cruel!” and “but Moseley and Butler say don’t do things that increase pain because – neurotags!”

Here’s my take on it.

Currently there exist very few, if any, randomised controlled trials of this approach for CRPS I. Actually, there are few RCTs for ANY form of CRPS and ANY treatment for CRPS.

This means we don’t have a great deal of evidence to go on when trying to decide the best approach for managing the functional problems experienced by people living with CRPS. We know that for some people mirror therapy is helpful, while there is less support for graded motor imagery (Bowering, O’Connel, Tabor, Catley et al, 2013).  We know there are very few pharmaceuticals that provide any pain reduction for people living with CRPS. There is “low quality evidence that bisphosphonates, calcitonin or a daily course of intravenous ketamine may be effective for pain when compared with placebo” (O’Connell, Benedict, McAuley, Marston et al, 2013), but otherwise very little else has been shown to have any effect at all either on pain intensity or function.

We do know that physiotherapy and occupational therapy focusing on function rather than pain reduction may have some longterm positive effects (O’Connell, Benedict, McAuley, Marston et al, 2013), and we also know that graded exposure treatments for other types of pain problem, especially low back pain, have been effective (studied since 2001).

BUT here’s the thing. Unless the person living with chronic pain is comfortable with the idea that this approach directly confronts their fear of painful flare-ups, it’s just not going to float. Both the clinician and the person living with pain need to understand the underlying principles of this approach – and have some skills to deal with the very likely distress that will emerge when pain inevitably flares up.

What we should also know is that this approach does not try to reduce pain – although for many people, according to one study (Barnhoorn, Oostendorp, van Dongen et al, 2012) pain does reduce. Yet for others, pain increases – but people can do more.

Where do I stand on this?

I think it’s worth a try but only if the person conducting the therapy is VERY comfortable with the underlying principles of graded exposure as it’s used for phobia. AND has skills to manage their own discomfort at seeing someone else experiencing high levels of distress. To me this means having had some additional training in graded exposure for phobia, and lots of practice at using mindfulness and other forms of maintaining empathy despite seeing another person being distressed. It’s not easy to be empathic without either losing your own cool – or “giving in” to the distress of the person – and that just undoes the therapy.

It also means the person participating in the therapy, ie the patient, must be completely on board with it, and not just the person but also his/her healthcare team AND family. AND have some skills to deal with distress that comes with exacerbations of pain. This approach is not for the faint-hearted, or for anyone who feels coerced into participating in the treatment without feeling very confident that they can maintain their involvement.

 

Barnhoorn, K. J., van de Meent, H., van Dongen, R. T. M., Klomp, F. P., Groenewoud, H., Samwel, H., . . . Staal, J. B. (2015). Pain exposure physical therapy (pept) compared to conventional treatment in complex regional pain syndrome type 1: A randomised controlled trial. BMJ Open, 5(12), e008283. doi:10.1136/bmjopen-2015-008283

Barnhoorn, K. J., Oostendorp, R. A., van Dongen, R. T., Klomp, F. P., Samwel, H., van der Wilt, G. J., . . . Frolke, J. P. (2012). The effectiveness and cost evaluation of pain exposure physical therapy and conventional therapy in patients with complex regional pain syndrome type 1. Rationale and design of a randomized controlled trial. BMC Musculoskeletal Disorders, 13, 58.

Barnhoorn, K. J., Staal, J. B., van Dongen, R. T., Frolke, J. P., Klomp, F. P., van de Meent, H., . . . Nijhuis-van der Sanden, M. W. (2014). Are pain-related fears mediators for reducing disability and pain in patients with complex regional pain syndrome type 1? An explorative analysis on pain exposure physical therapy. PLoS ONE [Electronic Resource], 10(4), e0123008

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

Ek, J. W., van Gijn, J. C., Samwel, H., van Egmond, J., Klomp, F. P., & van Dongen, R. T. (2009). Pain exposure physical therapy may be a safe and effective treatment for longstanding complex regional pain syndrome type 1: A case series. Clinical Rehabilitation, 23(12), 1059-1066.

O’Connell Neil, E., Wand Benedict, M., McAuley, J., Marston, L., & Moseley, G. L. (2013). Interventions for treating pain and disability in adults with complex regional pain syndrome- an overview of systematic reviews. Cochrane Database of Systematic Reviews, (4).

van de Meent, H., Oerlemans, M., Bruggeman, A., Klomp, F., van Dongen, R., Oostendorp, R., & Frolke, J. P. (2011). Safety of “pain exposure” physical therapy in patients with complex regional pain syndrome type 1. Pain, 152(6), 1431-1438.

bars across my window

Deconditioning? Or just not doing things any more?


For years there has been a general wisdom that people with chronic pain who gradually stop doing things “must” be deconditioned. That is, they must lose fitness, cardiovascular and musculoskeletal, and this is often used to explain low activity levels, high disability and the prescription of graded exercise.

While this explanation makes sense (remember what happens to limbs when they’re in plaster for six weeks? all skinny and wasted?) – it doesn’t inevitably hold, in my experience. I vividly recall a person who routinely swam 20 lengths of an Olympic pool in very fast time every day, yet could not, in his estimation, return to any kind of work, and who did not sit – for an entire three week programme. It’s always seemed a bit odd to me that even though people report they can’t do many everyday activities, they can complete a rigorous gym programme.

So, skeptical me was very pleased to see another paper by the wonderful Nicole Andrews, occupational therapist and PhD, and her colleagues Jenny Strong and Pamela Meredith. This one is about approach to activity engagement, certain aspects of physical function and pain duration and was published in Clinical Journal of Pain in January this year (reference at the bottom of the page). It’s an important paper because it challenges some of the assumptions often made about activity levels and “fitness”, as well as the use of an operant conditioning model for pacing – pacing involving working to a set quota, rather than letting pain be the guide. The concept of pacing has been woven into most pain management programmes since the early days of Fordyce, but more recently has been criticised for lacking a clear definition, and for very little in the way of empirical support as a stand-alone treatment.

In this study, Andrews and colleagues examined the relationship between certain activities and a “habitual” approach to activity engagement, and pain duration. This is a different approach to studying activity and over- or under- activity in that it examines specific activities rather than using a global measure of disability – and this is important because the people we work with do specific activities (or occupations as I’d call them) and it will be more important to be able to predict the types of activities people do, or not do, rather than simply using a general guide.

Andrews and colleagues used a tool I particularly like called the Pain and Activity Relations Questionnaire (McCracken & Samuel, 2007) – this is a 21-item measure that looks at how people approach their activities. It has three subscales – avoidance, confronting, and pacing. Confronting measures “over”activity, while the other two are self explanatory.  They also used the Oswestry Disability Index, an old standard in measuring physical functioning.

The analysis was really interesting, and well-described for those who want to dig deeper into how this team found their results. I’ll cut to the chase and simply point out that they used the items rather than the overall score of the ODI, which allows for a more fine-grained analysis of the kinds of activities individuals engaged in, and how they approached those activities. This is the stuff occupational therapists and physiotherapists really want to get their teeth into!

So, what did they find?

Firstly, individuals who reported high levels of avoidance and low over-activity also reported significant restriction in personal care tasks, compared with those people who reported low levels of both avoidance and activity. There was no relationship between this item and pain duration, but there was a relationship between pain intensity and interference.

Lifting tolerance, however, was affected by pain duration and pain intensity rather than avoidance patterns. Walking tolerance wasn’t affected by approach to activity, or pain duration, but age and pain intensity were important factors. Sitting tolerance was not related to approach to activity, and only pain intensity was a contributor rather than pain duration. Finally, standing was also not associated with approach to activity and was only related to pain intensity.

Sleep was influenced by approach to activity engagement – and with pain duration. This means people with pain for one year and who were inclined to be “over” active and not avoidant, and those who were highly avoidant and highly “over”active were more likely to report problems with sleep than those with low avoidance and low “over” activity. (BTW I put the “over” in quotes because it could also be called “confronting” or “pushing” or “doing” – I think it’s weird term not yet well-defined). The group most likely to report poor sleep were those reporting high “over”activity and low avoidance who reported sleep problems 9.23 times more than those reporting low “over”activity and low avoidance. Once again, pain severity was the only other variable influencing reporting.

Sex life was not associated with approach to activity engagement, nor to pain duration. Social life, however, was associated with approach to activity engagement with those reporting high avoidance and “over”activity reporting more restrictions than those with low levels of both, along with similar results for those reporting high avoidance and low “over”activity – again, pain duration wasn’t associated, but pain intensity was.

Finally, travel was more likely to be reported a problem by all those compared with the low avoidance, low “over”activity group, with the high avoidance, low “over” activity group most likely to report problems.

What does all this mean?

Bearing in mind that the population from whom these participants were taken were attending a tertiary pain management centre programme, and that this is self-report, the findings from this study are really very exciting. As the authors point out, when the ODI is mapped on to the ICF (International Classification of Functioning, Disability and Health) the instrument covers sleep (body function), personal care, lifting, walking, sitting and standing (activity limitations), and social life and travel (participation restrictions). Activity limitations can also be divided into two domains – mobility and daily activities (basic and instrumental activities of daily life) – walking, standing and sitting are therefore “mobility”, while personal care and lifting are “daily activities”.

These findings show that mobility activities were not associated with an individual’s approach to activity engagement – they differ from the other items in that they’re performance skills, that is, they make up other activities can’t be reduced to a smaller component. The authors suggest that the responses to these items in this study may reflect the individual’s perceived capability to engage in daily activities, as opposed to their actual physical performance to engage in these tasks.

I think this means it’s important to ask about what people do in daily life, rather than rely simply on reported levels of walking or sitting. Tie self report into activities – for example, sitting tolerance might be best described in terms of whether a person can sit to watch a whole TV programme, or whether they need to get up during the ad breaks.  It’s important to note the relationship between approach to activity and poor sleep – sleep being one of those aspects of living with pain that people most want addressed. Perhaps by moderating the approach to activity we might be able to help people develop more effective sleep patterns. It also seems to me that we need to tie outcomes from pain management to real life activities in which an individual wants to participate – rather than a more “objective” measure such as the six minute walk test – which might satisfy our urge to measure things in a nice orderly way, but might not be relevant to an individual’s life.

Finally, this study shows that overactivity and avoidance patterns are not inevitably associated with reduced capacity over time. I think this is a “received wisdom” that needs to be unpackaged

 

 

Andrews, N. E., Strong, J., & Meredith, P. J. (2016). The relationship between approach to activity engagement, specific aspects of physical function, and pain duration in chronic pain. Clinical Journal of Pain, 32(1), 20-31

McCracken LM, Samuel VM. The role of avoidance, pacing, and other activity patterns in chronic pain. Pain. 2007;130:119–125.

The Clearing

Pain, by any other name, still hurts


Whether we call it “widespread pain”, fibromyalgia, or any of the myriad other names it’s been given over centuries, pain that occurs in all four quadrants of the body and is accompanied by poor sleep, low mood, and “foggy thinking” is common. I can say this because a soon-to-be published meta-analysis of widespread pain (aka fibromyalgia) has found that approximately 10 – 15% of the population (or more accurately 11.8% with 95% confidence intervals of 10.3 to 13.3) report widespread pain of this type (Mansfield, Sim, Jordan, Jordan & Jordan, in press). More women than men report it, and those over 40 years old were also more likely to report it. Curiously (or not) these researchers found differences in prevalence depending on geographic variation and some cultural differences.

Diagnostic labels, and how we determine who is ill and who isn’t, is a field of study I’m fascinated by. Not so long ago, women with “the vapours”, or fainting spells, were considered to have “hysteria” or “wandering womb”. Low back pain has been variously painted as “railway spine”, rheumatism, lumbago, evil humours, “inflammation of the white fibrous tissue of the body” – and yes, the discs, degeneration of the joints, spinal irritation, nerve roots, facet joints …. ad infinitum (Allan & Waddell, 1989). Designating a set of human experiences as a particular form of health problem, and therefore worth treating has enormous implications for the individual, the treater and society. (For a longer paper on historical approaches to back pain, go here.

An interesting study by Adlrich and Eccleston (2000) looked at a social construction of what “everyday pain” means to a wide range of people. Using Q sort, which involves generating a big number of statements about the topic, then asking people to sort those statements into various piles with similar meanings, these researchers found that people believe that pain is a sign of malfunction; pain-as-self-growth (it makes us who we are, pain is essential for survival); pain-as-spiritual-growth (pain is an essential part of being human and makes the sufferer stronger through spiritual growth); pain-as-alien-invasion (pain is something external that invades and takes over who we are); pain-as-coping-and-control (pain gives us necessary information to alert us); pain-as-abuse (a negative experience inflicted upon individuals from powerful others); pain-as-homeostatic-mechanisms (regulates and shouldn’t be fought against); and finally pain-and-power (pain should not be used to obtain power over another).

Back to fibromyalgia. FM has a complex history. I think I mentioned a couple of weeks back that the orthopaedic surgeons I work with said to me “Is that even a thing?” when I mentioned my interest in this widespread pain problem. What? 11% of the population experiences it, and they wonder if it’s a “thing”?! The problem with FM is that there’s no imaging technique, no blood test, no objective method for diagnosing it – but there are a constellation of studies that have given us some ideas about how people with FM differ from those who don’t. Things like the pressure point threshold – the pressure at which pain is reported when a small pointed thing is poked into the skin (without breaking the skin); problems with descending inhibition in quantitative sensory testing; changes in brain structure such as increased functional connectivity. But of course, these things can’t be carried out in routine examinations – or could they?

In the study by Mansfield and colleagues, the justification for conducting a meta-analysis was that to plan interventions and develop a rationale for prioritising the condition requires data. Clinicians need to know the underlying prevalence so they can factor this problem in when they’re trying to diagnose a disorder. If a problem is fairly widespread in the population, and particularly amongst certain groups of people (women, middle-aged, and from certain geographical areas) then it’s worth knowing about, particularly if there are implications for problems, say after surgery.

The question occurring to me is, if this problem is as widespread as indicated by Mansfield, Sim, Jordan & Jordan (in press), why are there so many health professionals who don’t know about it?

Is it because it occurs more in women than men? There’s some research suggesting that when women attend for care, their treatment is different from men (Bernardes, & Lima, 2011, Richardson & Holdcroft, 2009; Stenberg, Fjellman-Wiklund & Ahlgren, 2012; Werner & Malterud, 2003)), and women’s pain from heart attack differs from mens (more diffuse, not always that left-sided, crushing pain), while women may be prescribed more medications for mood management when men are given analgesia. While women are over-represented in chronic pain statistics, they are not studied in experimental studies nearly as often as men. But men find it far more difficult to deal with the “masculinity” scripts within society and their experience of being disabled with chronic pain – it’s very hard to be “manly” and strong when you hurt all over (Ahlsen, Mengshoel, Sobrakke, 2012).

Is it because there are no “objective” diagnostic tests? Fibromyalgia can be a “diagnosis of exclusion”, the diagnosis a person gets given once all the diagnostic tests come back with no abnormality detected. But to me this doesn’t make a lot of sense – there’s no argument about the common headache, yet there’s no diagnostic test for that. I wonder if the old lumbago problem would be in a similar category had the anatomy of the spine not had quite such a lot of impact.

Is it because it’s been a diagnostic hot potato for a long time? What I mean by this is it’s had so many names and proposed mechanisms that no-one believes it’s “real” any more. Well, maybe, but are back pain, CRPS or whiplash any different?

I’m not sure why fibromyalgia has such deniability amongst a group of health professionals, and I’m sure cynics reading this will suggest something about not being able to use a scalpel on it, but I’m not convinced it’s simply that, either. The thing is, fibromyalgia by any name is common and has profound consequences for people who live with it. It’s hard to make sense of. It defies a simply Cartesian “body/mind” split. It exhausts and fogs and constrains life for many people. It complicates recovery from surgery, influenza, even concussion. It’s hard to explain – drawing on the term “central sensitisation” can bring on arguments about tautology (how can pain be explained by the presence of pain?). There are few treatments, and these have a very limited effect.

At the same time as wanting fibromyalgia to be recognised by my colleagues, I don’t want to suggest a hard-out diagnosis awareness campaign. The risks of people being mislabelled, or diagnosed correctly but then unhelpfully managed or even given a label that invites derision, is at this point in history far too great. Mostly I’d just like people living with fibromyalgia to realise that although it’s “real” it doesn’t need to define who we are.

 

 

Ahlsen, Birgitte, Mengshoel, Anne M., & Solbrække, Kari N. (2012). Troubled bodies – troubled men: a narrative analysis of men’s stories of chronic muscle pain. Disability & Rehabilitation, 34(21), 1765-1773. doi: 10.3109/09638288.2012.660601

Aldrich, Sarah, & Eccleston, Chris. (2000). Making sense of everyday pain. Social Science & Medicine, 50(11), 1631-1641. doi: http://dx.doi.org/10.1016/S0277-9536(99)00391-3

Allan, David B, & Waddell, Gordon. (1989). An historical perspective on low back pain and disability. Acta Orthopaedica, 60(s234), 1-23. doi: doi:10.3109/17453678909153916

Bernardes, Sonia F., & Lima, Maria Luisa. (2011). On the contextual nature of sex-related biases in pain judgments: The effects of pain duration, patient’s distress and judge’s sex. European Journal of Pain, 15(9), 950-957.

Bernardes, Sonia F., & Lima, Maria Luisa. (2011). A contextual approach on sex-related biases in pain judgements: The moderator effects of evidence of pathology and patients’ distress cues on nurses’ judgements of chronic low-back pain. Psychology & Health, 26(12), 1642-1658.

Mansfield, Kathryn E., Sim, Julius, Jordan, Joanne L., & Jordan, Kelvin P. A systematic review and meta-analysis of the prevalence of chronic widespread pain in the general population. Pain.

Richardson, Jen, & Holdcroft, Anita. (2009). Gender differences and pain medication. Women’s health, 5(1), 79-90.

Stenberg, G., Fjellman-Wiklund, A., & Ahlgren, C. (2012). “Getting confirmation”: gender in expectations and experiences of healthcare for neck or back patients. J Rehabil Med, 44(2), 163-171. doi: 10.2340/16501977-0912

Werner, Anne, & Malterud, Kirsti. (2003). It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Social Science & Medicine, 57(8), 1409-1419.

Te kouka time traveller

When medication side effects get in the way of living life


There are very few people living with chronic pain who gleefully swallow a handful of pills and skip happily off for the day feeling chipper and bright as a button. For the most part, people living with chronic pain don’t seem to enjoy the need to take medications – I’ve heard some say they’re worried about “not being able to tell whether I’m doing damage” when they can’t feel their pain, others say they don’t think medications are very helpful, while still others complain about rattling when they walk. But by far the biggest complaint is the medications for chronic pain have unpleasant side effects – side effects so bad that for some people, it’s just not worth taking the pills at all.

Surprisingly, although there are many studies looking at the side effects of medications, and why they occur, the effect of side effects on doing everyday activities has seldom been examined. Thankfully a group of researchers from Harvard and Johns Hopkins have taken on this task, and we now have some information about just how much side effects can get in the way of life.

What side effects do people experience?

Nausea, dizziness, headaches, constipation, weakness, cognitive fogginess, excessive sleepiness, skin itchiness and rashes, muscle twitching – you get the drift!

Why do they happen?

Many medications for pain, and particularly medications for chronic pain, exert their influence on the central nervous system – where the receptors for neurochemicals important in modulating our experience of pain are found. It would be fabulous if there were some separate receptors that only dealt with “unhelpful” pain that could be targeted, but because pain is an adaptive response designed to protect us – and because in evolutionary terms experiencing pain is crucial to our survival and has been present from early on in our evolutionary development – receptors targeted by many pain medications are found throughout the body. And particularly in the brain – hence the fogginess, sleepiness, and headaches.

What does this mean?

When prescribing medications for chronic pain, clinicians and their patients ultimately go through a process of empirical study. What this means is that because we don’t know which type of medication is most likely to help an individual, each one needs to be tried out. And the trial and error process involves establishing the balance between helpful effects – yes, pain reduction, perhaps some help with sleep – and unhelpful effects – those side effects. The process of deciding which particular combination of medications to take is absolutely personal – only the person with pain can possibly determine whether they find the balance of helpful vs unhelpful effects tolerable.

What about this study?

In this study, Martel, Finan, Dolman and colleagues (2015) sampled a group of 111 people living with chronic musculoskeletal pain. The participants were asked to report once a month, for six months, on their medication use, side effects, and pain and activity levels.  Interestingly, the group selected had to have been prescribed opioids because the larger study of which this one was a small part, was designed to establish ways to improve adherence to medication taking. In addition, this group of people were considered to be at risk of prescription opioid misuse based on an assessment for this problem, but those with a current or past substance abuse problem within the past 12 months. What this means is that while the study has some interesting findings, they will not be representative of all people living with chronic pain, and results need to be interpreted in this light.

OK, OK, I’ll get on with it!

The findings

There were no differences between men and women in terms of pain intensity, mood or pain-related activity interference but women were more likely to describe side effects due to medication. Reports of side effects were no different between those taking opioid medications as well as other pain medications such as antidepressants, anticonvulsants or NSAIDs.

Now for some expected findings: people reporting greater pain-related interference were less likely to be employed, while changes in pain intensity were related to pain-related interference, and similarly, changes in mood were also associated with greater pain related interference.

After some statistical magic (multilevel modeling is horrendously complex!), these researchers examined the unique contribution of medication side effects on pain-related activity interference. What they found was that side effects contributed a unique amount to interference even after controlling for gender, pain intensity and negative mood, and even taking into account individual differences between people.

Now this is important. Medications are prescribed for pain for two reasons: to reduce pain (obviously) and it’s assumed that because pain is then lower, pain-related interference will also be lower. In other words, people will feel less pain and do more things they want to do. What this study suggests is that the burden of side effects from medications can actually ADD to the burden of disability experienced by people living with pain. Now, one way to deal with this is to reduce the number of medications a person takes. That would take care of the side effect burden – but it would also increase the pain. Both distress and disability may then increase. An alternative is to treat the side effects with something else – a bit like taking something to stop constipation when being prescribed opioids. But that in itself can create problems – because, as many people I’ve talked to mention, they really don’t want to rattle like a pill bottle from all the medications they have to swallow.

I think there are two more alternatives. One is to look at the timing of medication taking. I’ve seen many people prescribed gabapentin three times a day – but gabapentin is sedating, and people complain of the effects on driving and on concentrating at work. An alternative, and one that I’ve seen carried out very successfully for years at Burwood Pain Management Centre in Christchurch, NZ, is prescribing the same dose of gabapentin, but taking it once a day at night. A good night’s sleep is had, and the hangover effect during the day is minimised. But this requires a change in how the doctor prescribes – and some confidence to fiddle about with the timing of the dose. It also suggests that the person living with pain, his or her doctor and probably the pharmacist need to work together to develop a plan that maximises the effectiveness of medication administration.

The second is to look at reducing reliance on medication as the primary form of coping strategy for chronic pain. This solution is a vexed one. Many people living with chronic pain are afraid to reduce their use of medication. Many doctors are unaware of alternative ways of coping even though it’s evident that as many as three people in four will not obtain any benefit from medication.  Worse still, many communities have few treatment providers available to help people develop nonpharmacological ways of living well with pain. I think that’s a tragedy and I think it’s time that changed.
Martel MO, Finan PH, Dolman AJ, Subramanian S, Edwards RR, Wasan AD, & Jamison RN (2015). Self-reports of medication side effects and pain-related activity interference in patients with chronic pain: a longitudinal cohort study. Pain, 156 (6), 1092-100 PMID: 25782367

Sunday alone time

Developing a shared plan


Last week I introduced you to one way I use to develop a shared understanding of the many factors influencing how and why a person seeks help for their pain.  The person and I work together to understand his or her perspective. I use a range of open-ended questions and reflective listening to guide our discovery of how his/her pain affects life and emotions.

Some points to note:

  • I don’t try to give explanations at this point – explanations will influence what the person says to me, and may inadvertently shape or change what he or she says without necessarily changing his or her beliefs.
  • I’m not trying to make any diagnoses either. A diagnosis is just a short-hand way of lumping a bunch of symptoms together. Great for research, and great for when we have a clear treatment, but a diagnosis tells us nothing about how the problem is affecting this person at this time. And in pain we’re always looking at the person and his or her experience, because even if we successfully get rid of the pain, the person will have learned something through the experience and this will influence the person in the future.
  • I’m informed by what we know about pain from research, so I’m constantly probing and looking for the relationships between factors we know will affect the person. Note that I’m not looking for tissue-level influences, but rather I’m investigating at a “person” level. This means I’m looking at psychological and sociological processes. I’m not ignoring those tissue-level factors, but I’m placing those off to one side for the moment. There are a couple of reasons for this: the first is that I’m probably not going to directly influence tissue-level factors. I don’t lay hands on people. I don’t give drugs. The second is that the person isn’t likely to be aware of those factors. They know much of their own experience (not all – but we’ll come to that), and experience and perception are the most potent drivers of what a person believes and therefore does.
  • I try wherever possible to flesh out my interview with additional information. This might be from questionnaires, or observing, or clinical notes from other people. And yes, I incorporate this information with the full knowledge of the person – in fact, they’re part of the process of integrating this information.

What do I end up with?

A spaghetti junction! A diagram that looks a lot like this:

formulationThis diagram is a pretty simple one, when you think of all the factors that could be involved – and in this case, I’ve made it much clearer than my usual scribble!

At this point I have a series of hypotheses to explain why Gerald is in this state. Together with Gerald, we’ve established that there could be some fear of pain, and in particular, fear that Gerald won’t be able to cope if his pain goes up and doesn’t settle. Gerald has also identified that he can feel helpless at these times, because he doesn’t know what else to do to manage his pain. He believes he’s getting unfit, and that’s adding to his feelings of frustration. He doesn’t want to go out with his mates because he’s irritable. He tries not to let his wife know how he’s feeling to protect her, but this adds to him feeling isolated. He doesn’t want to go back to work, not because he’s not motivated, but because he’s afraid he’ll let them down and this will add to his guilt. He doesn’t think his case manager understands this.

I could ask Gerald to list his main concerns and use these as a guide for my treatment outcomes, but I’ve recently started using a different approach. I’ll ask Gerald what he would be doing differently if his pain wasn’t such a problem to him.

Bronnie: Let’s imagine for a minute, what would you be doing differently if your pain wasn’t such a problem?

Gerald: Well, I’d be back at work, for one thing.

Bronnie: OK, and would you think you’d be back at work full time, or ease your way back in?

Gerald: Well, I think it would be sensible to ease myself back in because it’s been a while and I’m out of shape. Better to know I can do it than have a go and fail.

Bronnie: Great idea. What else would you be doing differently if your pain wasn’t such a problem?

Gerald: I’d take my wife out for dinner, it’s been hard on her while I’m so laid up and grumpy.

Bronnie: What’s your main concern about going out to dinner with your wife right now?

Gerald: I can’t sit long enough to enjoy a meal out. It all seems so hard, to get into a car, and drive to a restaurant, and sit there for three courses. I’m just too sore to do it.

Bronnie: So going to a restaurant and sitting to get there and while you’re there is going to increase your pain?

Gerald: Yeah. Is it worth it? What if it doesn’t settle? I can’t sleep and then the next day I’m shattered. I don’t think it’s worth it.

Bronnie: OK. Is there anything else you’d be doing if your pain wasn’t such a problem for you?

Gerald: I’d be going out and seeing my mates, going fishing and 4 wheel driving. I miss that. There’s no way I could do that right now.

Bronnie: What’s your main concern about going fishing, and seeing your mates at the moment?

Gerald: I’d be ready to go home before they’d even started. They’d get fed up with me slowing them down. And casting is really hard on my neck.

Bronnie: So to sum up then, it seems like there are some things you’d love to be doing, but reasons you think it would be better not to be doing them right now. If we go through them, you’d love to go back to work, but you’d like to do it gradually so you can get in shape again, and so you know you’ll succeed. You’d love to take your wife out for dinner, but the whole dinner thing feels too hard, and you’re worried that your pain will get out of hand and you won’t be able to sleep. And you’d really love to get back out with your mates again, and go fishing, but right now you think your mates would get fed up with you because you’d want to leave too early, and you wouldn’t be able to cast without setting your pain off. Does that sound about right?

Gerald: Yeah.

Bronnie: I think there are some things we could begin to work on so you feel more confident you can handle it when your pain levels go up and down. And I think we could work on some physical things that could help you feel a bit fitter, more able to do things for longer. And finally, I think it would be great if we could help you and your wife connect a bit more, perhaps not yet at a sit-down restaurant, but perhaps there are other ways this could happen. What are your thoughts? Is there anything you’d especially like to look at?

What I’ve tried to do here is identify the underlying reasons Gerald isn’t doing things. While pain appears to be the problem, it’s not the pain it self but the fear of possible effects of pain that haven’t even happened yet that are really stopping him from doing things. And this is adding to the misery of having neck pain.

By giving Gerald the chance to tell me his dreams, we’re going beyond “I need to get rid of my pain” and into the reasons for living in the first place. People don’t just live to get rid of pain, they live to have lives full of meaning, let’s not ever forget that.

kayaks

After your assessment – then what?


Pain management is replete with assessment measures. There is even a handbook dedicated to pain assessment. I’m sure that every clinician has their favourite assessment tools and process. But there seems to be a gap in terms of how to use the findings from all this assessment: how to put it all together to make some sort of sense.

Chronic pain and disability is a multifactorial problem. There are contributions from biological processes, from psychological mechanisms, and from the social environments in which we live. I think only die-hard types would argue that thinking about pain from a purely biological perspective in any but the most simple presentations makes any sense at all. But how do you put the information together to arrive at a reasonable set of hypotheses about what is going on? I think it helps to have some sort of framework, because this simplifies the way information can be presented. I also think it’s useful to work from the patient’s perspective first, before integrating any contributing factors that don’t feature in the patient’s narrative.

I usually sit down with a large piece of paper or a whiteboard, and a pen, and begin assembling a kind of story.

Bronnie: “You’ve said that it’s hard to know when your pain is going to bother you, and you’re not sure how to make sense of it. Let’s see what we do know already. Tell me your theory of why your pain is still going on.”

Gerald: “Okay… Well one doctor said it was because I’d had a car accident and I’d strained my neck muscles when I got shunted from behind. I know I started to get sore the day after that accident.”

Bronnie: “Let’s put down “got shunted from behind – neck strain”.

smashGerald: “Yep, that’s how it happened.”

Bronnie: “And has anyone else given you an explanation that makes sense?”

Gerald: “Well, this one guy said that because my head got knocked around I might have had a concussion, and that might be why I have these headaches.”

Bronnie: “Does that make sense to you? Should I put that down?”

Gerald: “Yes, put that down, because I’ve had headaches ever since, and I know I really got a shake-up.”

Bronnie: “So, we have a shunt from behind, and a concussion. Is there anything else to explain why you’ve been having such trouble?”

Gerald: “Well one doctor said I was, what did he call it, kinesiophobic. That means I’m afraid to move. Well of course I’m afraid to move – it hurts! But it’s not like I’m a mental case.”

Bronnie: “What do you think he meant by that term?”

Gerald: “I think it was a way he could say that it wasn’t his fault I wasn’t getting any better. That I need to pull myself together and start doing things.”

Bronnie: “What would you like me to put down on this diagram then? What do you think, are you afraid to move?”

Gerald: “Yes, I don’t want to hurt, so I don’t move. Every time I do move, I get a headache and feel awful.”

Bronnie: “I’ll add that in, then. It makes sense that if you hurt when you move, you stop moving. What we call it doesn’t really matter.”

Untitled-1Bronnie: “What’s it been like for you, not moving very much? How do you feel in yourself?”

Gerald: “It’s horrible. My life has closed in on me, and I’m not doing very much at all. I feel pretty down some days, but mostly I feel frustrated.”

Bronnie: “We could say then that being afraid to move has meant you’ve stopped doing a lot of things. And as a result you’re feeling down and frustrated.”

Gerald: “You can say that again.”

Bronnie: “And what about the people around you? What’s it been like at home?”

Gerald: “The kids couldn’t care less. They’re just grumpy because I’m not taking them to places like a taxi driver. I’m not driving because I really don’t want to get back into that car, even though it’s been fixed.”

Bronnie: “And what about your partner? How are things with her?”

Gerald: “I think she’s really concerned about me, but doesn’t know what to do. Sometimes I know she’s really angry with me, like it was my fault I got hit, other times she’s really supportive, and wants me to get some treatment to fix it so I can get back to normal again.”

familyBronnie: “And what’s been happening with work?”

Gerald: “Well, I can’t go back yet because I don’t want to drive. And I keep getting these headaches, so I don’t think I could even think about going back. My boss, he’s been ringing me to see if there’s anything he can do – he’s a good sort, and I want to go back, but what can I do when I’m like this?”

Bronnie: “And how are you doing for income at the moment?”

Gerald: “I’m on compensation, but my case manager keeps pressuring me to go back to work. She doesn’t seem to realise that I can’t do anything, I’d just be a liability. I think she needs to stop hassling me until I’ve got things sorted out a bit more. If only I could get rid of these headaches, and move my neck a bit more, but I can’t even look down to pick things up even if I could carry them.”

fomrulationBronnie: “To sum up, it looks to me like right now you’re feeling pretty stuck. There are lots of different explanations for your headaches and neck pain, but no matter what we call it, you’ve stopped doing things and as a result you’re feeling fed up and down. And your family aren’t really helping though they’re doing their best. Your employer is keeping in touch and that’s great but you don’t think you’re reliable enough to go back to work, even though your case manager keeps pushing for you to try. How does that sound?”

Gerald: “Pretty right to me.”

At this point, Gerald and I have developed rapport, and a shared understanding of his perspective on his pain. You’ll note that I haven’t started “educating” him, or trying to change his understanding. I haven’t done this because I want to be certain I’ve started to understand where he’s coming from. People don’t develop weird beliefs for no reason – these beliefs usually begin from a misunderstanding, or perhaps faulty logic that hasn’t accounted for some of the factors, and they usually make sense once you take the time to listen to the person.

I will also often add some questions about treatments he’s tried, and what he’s learned from them. I’ll usually ask about his family and colleagues beliefs about pain and what he should or shouldn’t be doing. I’ll ask about other times he’s had pain and what he’s done to recover, and what he might have learned about his resourcefulness and coping from these times (or his vulnerabilities and challenges).

I will usually then ask him what his main concern is, and what he thinks the “next best step” might be. The answers to these questions will often help guide the first therapeutic steps we take. I also incorporate his responses to a set of questionnaires I usually administer before seeing him. These include the Pain Catastrophising Scale, Chronic Pain Acceptance Questionnaire, Chronic Pain Coping Inventory, and Pain Anxiety Symptoms Scale, plus a measure of general function or disability such as the Pain Disability Index, or the Multidimensional Pain Inventory. By reflecting on the findings from these questionnaires, together we can factor those aspects of his understanding into the formulation diagram.

If I’m working within a team, I like to bring the team into the formulation process – but not until after the client/patient and I have developed our understanding first. This makes it much easier to generate a collaborative approach to learning about the many factors influencing the person’s presentation.

I’ll continue with this formulation in next week’s post….

A couple of good readings:

Asmundson, Gordon J., & Hadjistavropolous, Heather D. (2006). Addressing Shared Vulnerability for Comorbid PTSD and Chronic Pain: A Cognitive-Behavioral Perspective. Cognitive and Behavioral Practice, 13(1), 8-16.

Thompson, B. (2012). Abductive reasoning and case formulation in complex cases. In L. Robertson (Ed.), Clinical Reasoning in Occupational Therapy: Controversies in practice (1st ed., pp. 15-30). Oxford: Wiley-Blackwell.

Tompkins, Michael A. (1999). Using a case formulation to manage treatment nonresponse. Journal of Cognitive Psychotherapy, 13(4), 317-330.

Vertue, F.M., & Haig, B. D. (2008). An abductive perspective on clinical reasoning and case formulation. Journal of Clinical Psychology, 64(9), 1046 – 1068. doi: http://dx.doi.org/10.1002/jclp.20504

don't come around no more

On pain…and suffering


Two words that often go together: Pain, Suffering.  Pain we can define according to the IASP definition –

An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage (Read the note below as well).

Suffering? What is that?

My favourite definition comes from Eric Cassell (Emeritus Professor at Cornell University). He makes the point that bodies don’t suffer, only people do, saying that “in all the situations in which suffering comes about the meaning of the occurrence to the person and the person’s perception of the future are crucial” (Cassell, 2011). The point he makes is that while bodies may have nociception, and neuroendocrine responses to emotional stimuli, bodies do not have a sense of the future, and bodies don’t know meanings, only people do.  Illness doesn’t come from disease, it comes from a process that “unfolds over time” as the sickness and how it is lived show the individual character of the person who has them.

So, then, what is suffering? It is the response to a threat to self-integrity.  This means the way we suffer is always personal to what matters most to us.

Cassell’s paper outlines why some of our healthcare efforts result in more suffering than less. He argues that health professionals want to alleviate suffering, but need some sort of measurement tool to detail whether their efforts have met with success. But being better, or worse, is “ultimately defined by the patients themselves”, and when sickness is defined, it should reflect what it means to be well in the patient’s terms (Cassell, 2011, p. 12).

Now here’s where it gets interesting. Because health professionals make assumptions about what it is that is causing the suffering in their patients. And in many cases, the assumption in pain management is that it’s the pain that is causing the suffering. If that were the case, people with low levels of pain wouldn’t seek help, and people with extreme pain would be seeking treatment. Is that the case? Well, not exactly, actually. People seek treatment because their pain is beginning to interfere with what they want to do (Ferriera, Machado, Latimer, Maher, Ferriera & Smeets, 2010). It’s the meaning of the pain that drives people to look for help. So, we have people with arm pain they’ve had for months, but they seek treatment only when there is a change at work because now they can’t keep up.  People with low back pain who only look for help because it’s winter now and they can’t stand on the rugby field to watch their son playing.

The problem with assuming that having pain is equal to suffering is that there is an expectation that treating the pain intensity will automatically alleviate the suffering.

Let’s think about that for a moment: Jonathan has just had his first episode of angina. He came into hospital for it to be checked out, and has been given a clean bill of health but given tablets to take if the pain returns. He’s advised “this is a bit of a warning”, and told to go on his way but perhaps lose a little weight and do some more exercise. Jonathan hears “next time you have this it could be the Big One”, and because his pain occurs when he’s doing exercise, he doesn’t exercise very often. He takes his angina pills as soon as he begins to feel a little tightness in his chest. And he seems to be having this quite often, especially when he starts thinking about how he nearly had a heart attack. He has no pain – but he is suffering.

Or another example: Frances has had a series of blocks to locate the source of her pain in her lower back. They’ve found it, but the results of the radiofrequency neurotomy are not as good as the blocks were. She has a lot less pain, but she’s afraid that if she moves too much, she might do more damage to her back and this will bring her pain on, so she’s playing it safe and hasn’t returned to her netball. She misses the social atmosphere of netball and, to be honest, she’s feeling down in the dumps, and because she’s not exercising she’s gaining weight. She’s suffering although her pain has been reduced.

I’ll conclude with these thoughts from Cassell (2011). I think this paragraph is profound –

A human being in all its facets interacts simultaneously outwardly into the world and with others, as well as inwardly in emotions, thoughts, and the body, and these are generally consistent and harmoniously accordant. By contrast, suffering variously destroys the coherence, cohesiveness, and consistency of the whole. The person’s experience of this is of no longer being in accord and “whole,” but rather of “being in pieces,” of not being able to “hold themselves together.” It is in this sense that suffering threatens or destroys the integrity or intactness of the person.

He points out that some practitioners think almost two kinds of knowledge exist: medical science about the body and disease, and knowledge of the person. And that these only join together at the bedside.  He says “The problem is not two kinds of knowledge in medicine, the problem is that the goals of practice are almost universally divided – treat the disease and care of the patient focusing on the personal asepcts of the illness – as though these were two separate elements to be brought together. That is not correct. There is only one goal: the well-being of the whole person who is the patient.

And this is The Most Important Thing Ever:

The key to relief of suffering is a focus on function. What do patients have when they have a sense of well-being? They believe they can accomplish their purposes and goals. Put another way, they can do the things they need and want to do to live their lives the way they want to (Cassell, 2011, p. 16).

Note: The inability to communicate verbally does not negate the possibility that an individual is experiencing pain and is in need of appropriate pain-relieving treatment. Pain is always subjective. Each individual learns the application of the word through experiences related to injury in early life. Biologists recognize that those stimuli which cause pain are liable to damage tissue. Accordingly, pain is that experience we associate with actual or potential tissue damage. It is unquestionably a sensation in a part or parts of the body, but it is also always unpleasant and therefore also an emotional experience. Experiences which resemble pain but are not unpleasant, e.g., pricking, should not be called pain. Unpleasant abnormal experiences (dysesthesias) may also be pain but are not necessarily so because, subjectively, they may not have the usual sensory qualities of pain. Many people report pain in the absence of tissue damage or any likely pathophysiological cause; usually this happens for psychological reasons. There is usually no way to distinguish their experience from that due to tissue damage if we take the subjective report. If they regard their experience as pain, and if they report it in the same ways as pain caused by tissue damage, it should be accepted as pain. This definition avoids tying pain to the stimulus. Activity induced in the nociceptor and nociceptive pathways by a noxious stimulus is not pain, which is always a psychological state, even though we may well appreciate that pain most often has a proximate physical cause. [italics my own]

Cassell, Eric J. (2011). Suffering, whole person care, and the goals of medicine. In T. A. E. Hutchinson (Ed.), Whole person care: A new paradigm for the 21st century (pp. 9-22). New York, NY: Springer. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=psyc7&AN=2011-24010-002. doi: 10.1007/978-1-4419-9440-0

Ferreira, Manuela L., Machado, Gustavo, Latimer, Jane, Maher, Christopher, Ferreira, Paulo H., & Smeets, Rob J. (2010). Factors defining care-seeking in low back pain–A meta-analysis of population based surveys. European Journal of Pain, 14(7), e1-e7. doi: http://dx.doi.org/10.1016/j.ejpain.2009.11.005