Resilience/Health

Primary pain disorders


In a move likely to create some havoc in compensation systems around the world (well, at least in my corner of the world!), the International Association for the Study of Pain has worked with the World Health Organisation to develop a way to classify and thus record persistent pain conditions in the new (draft) ICD-11. While primary headache disorder has been in the classification for some years, other forms of persistent pain have not. Recording the presence of a pain disorder is incredibly important step forward for recognising and (fingers crossed) funding research and treatment into the problem of persistent pain. As the IASP website states:

Chronic pain affects an estimated 20 percent of people worldwide and accounts for nearly one-fifth of physician visits. One way to ensure that chronic pain receives greater attention as a global health priority is to improve the International Classification of Diseases (ICD) diagnostic classification.

The classifications are reasonably straightforward, with an overall classification of “chronic pain”, and seven subcategories into which each type of pain can be placed.

Now there will be those who are uncomfortable with labelling a symptom (an experience, aporia, quale) as a separate diagnosis. I can understand this because pain is an experience – but at the same time, just as depression, which is an experience with clinical and subclinical features, so too is pain. There is short-term and useful pain, serving as an alert and warning, and typically an indication of the potential or actual threat to bodily integrity. Just as in depression which has short-term and usually useful episodes of sadness, withdrawal and tearfulness (as in grief). At the same time, there are periods when sadness becomes intractable and unhelpful – and we call this depression. Underlying both of these situations are biological processes, as well as psychological and social contributors. Until now, however, persistent pain has remained invisible.

The definition of chronic pain, at this time, is the IASP one from the 1980’s:

“Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. Often, pain serves as a symptom warning of a medical condition or injury. In these cases, treatment of the underlying medical condition is crucial and may resolve the pain. However, pain may persist despite successful management of the condition that initially caused it, or because the underlying medical condition cannot be treated successfully.

Chronic pain is pain that persists or recurs for longer than three months. Such pain often becomes the sole or predominant clinical problem in some patients. As such it may warrant specific diagnostic evaluation, therapy and rehabilitation. Chronic pain is a frequent condition, affecting an estimated 20% of people worldwide. This code should be used if a pain condition persists or recurs for longer than 3 months.”

Chronic Primary Pain is defined as “…chronic pain in one or more anatomical regions that is characterized by significant emotional distress (anxiety, anger/frustration or depressed mood) and functional disability (interference in daily life activities and reduced participation in social roles). Chronic primary pain is multifactorial: biological psychological and social factors contribute to the pain syndrome. The diagnosis is appropriate independently of identified biological or psychological contributors unless another diagnosis would better account for the presenting symptoms. Other chronic pain diagnoses to be considered are chronic cancer pain, chronic postsurgical or posttraumatic pain, chronic neuropathic pain, chronic headache or orofacial pain, chronic visceral pain and chronic musculoskeletal pain. Patients with chronic primary pain often report increased depressed and anxious mood, as well as anger and frustration. In addition, the pain significantly interferes with daily life activities and participation in social roles. Chronic primary pain is a frequent condition, and treatment should be geared towards the reduction of pain-related distress and disability.” (definition are found here)

The definition doesn’t require identified biological or psychological contributors – so people with primary pain would be those who have fibromyalgia, persistent low back pain, perhaps even “frozen” shoulder. The main requirement is that the person is distressed by it, and that it interferes with life. Now here’s a bit of a problem for those of us who have learned to live well with our persistent pain – I experience widespread pain, but generally I’m not distressed by it, and seeing as I’ve lived with it since my early 20’s, I find it hard to work out whether I’m limited by it, or whether I’ve just adjusted my life around it, so it doesn’t really get in the way of what I want to do. Technically, using the draft definition, I might not be given the label. Does this mean I don’t have chronic primary pain?

Why did I suggest compensation systems might be interested in this new classification? Well, in New Zealand, if a person has a pre-existing condition, for example they have osteoarthritic changes in their spine even if it’s not symptomatic (ie it doesn’t hurt), and then lodges a claim for a personal injury caused by accident, they may well find their claim for cover is declined.  What will happen if someone who has fibromyalgia, has an accident (say a shoulder impingement from lifting something heavy overhead), and the problem fails to settle? I think it’s possible they’ll have their claim declined. Low back pain is probably the most common primary pain disorder. Thousands of people in New Zealand develop low back pain each year. Few will have relevant findings on imaging – and even if imaging shows something, the potential for it to be directly related to the onset of low back pain is open to debate. Especially if we consider low back pain to be a condition that doesn’t just appear once, but re-occurs thereafter (1-7). What will this mean for insurers?

I don’t know where this classification will lead insurers, but from my perspective, I can only hope that by incorporating chronic pain into the ICD-11 we will at least begin to show just how pervasive this problem is, and how many people need help because of it. And maybe, just maybe, governments like the New Zealand government, will begin to take persistent pain seriously and make it a national health priority.

  1. Dunn, K.M., Hestbaek, L., & Cassidy, J.D. (2013). Low back pain across the life course. Best Practice & Research in Clinical Rheumatology, 27(5), 591-600.
  2. Artus, M., van der Windt, D., Jordan, K.P., & Croft, P.R. (2014). The clinical course of low back pain: A meta-analysis comparing outcomes in randomised clinical trials (rcts) and observational studies. BMC Musculoskeletal Disorders, 15, 68.
  3. Vasseljen, O., Woodhouse, A., Bjorngaard, J.H., & Leivseth, L. (2013). Natural course of acute neck and low back pain in the general population: The HUNT study. Pain, 154(8), 1237-1244.
  4. Hoy, D., March, L., Brooks, P., Blyth, F., Woolf, A., Bain, C., . . . Buchbinder, R. (2014). The global burden of low back pain: Estimates from the global burden of disease 2010 study. Annals of the Rheumatic Diseases, 73(6), 968-974.
  5. Campbell, P., Foster, N.E., Thomas, E., & Dunn, K.M. (2013). Prognostic indicators of low back pain in primary care: Five-year prospective study. Journal of Pain, 14(8), 873-883.
  6. Axén, I., & Leboeuf-Yde, C. (2013). Trajectories of low back pain. Best Practice & Research Clinical Rheumatology, 27(5), 601-612. doi: http://dx.doi.org/10.1016/j.berh.2013.10.004
  7. Hoy, D. G., Smith, E., Cross, M., Sanchez-Riera, L., Buchbinder, R., Blyth, F. M., . . . March, L. M. (2014). The global burden of musculoskeletal conditions for 2010: an overview of methods. Annals of the Rheumatic Diseases, 73(6), 982-989. doi:10.1136/annrheumdis-2013-204344
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Everyday hassles of fibromyalgia


This post has been on my mind for a while now. I live with fibromyalgia (FM) and want to share some of the everyday hassles I face. This isn’t a “oh woe is me” kind of post, it’s more of a “if you’re a clinician working with someone who has fibromyalgia, these are some things to ponder”.

Diagnosis

I worked in chronic pain management for almost 20 years before I recognised that the pains I’d been experiencing most of my adult life actually added up to “…a syndrome of diffuse body pain with associations of fatigue, sleep disturbance, cognitive changes, mood disturbance, and other variable somatic symptoms”(Fitzcharles, Ste-Marie, Goldenberg et al, 2012). I’d hurt my back in my early 20’s, thankfully been seen by Dr Mike Butler and given the Melzack & Wall book “The Challenge of Chronic Pain” to read, so I wasn’t afraid of my pain and just accepted it as part of life. What I hadn’t really recognised was that not only was the pain in my lower back part of the picture, so too was the pain in my neck, shoulders, arms, hips, legs, feet, and the irritable bowel, and the gastro discomfort, and the migraines and the dysmenorrhoea. Not to mention the fatigue, rotten sleep, foggy thoughts, and low mood.

Diagnosis for people living with fibromyalgia is often delayed.  People with fibromyalgia may resist going to the GP for what seem to be short-term but painful bouts in various parts of the body. There for a couple of weeks, then shifting to another part of the body. As one person said to me “You feel a fool going to see a Dr about a pain that’s not consistent to say ‘Oh Doctor and I have pain here, and here and here and last week I had one here…especially when it might be gone next week, and that other one has already gone.'”. This experience is echoed in qualitative research where, for example in a study by Undeland and Malterud (2007) people said that although having a label was reassuring (it’s not something that will kill you!), the label itself was often difficult to obtain (doctors not being keen to label something so nebulous as FM), and even with a label health professionals and the general public “pay no attention to the name, or blatantly regard them as too cheerful or healthy looking” (Undeland & Malterud, 2007).

Treatment

One of the problems with getting the diagnosis is that very few people get relief from medication. Those that do may find their pain settles almost completely, but many others have no effective analgesia despite trying numerous combinations. I’m one of them. What this means is that “self management” is the order of the day – yet in many places this is not even considered, let alone having services to help people develop such skills.

I’ve learned that my body feels best when I maintain a consistent level of activity irrespective of the day of the week. I enjoy stretching, walking, cycling and dancing, but I also love gardening, fishing, walking the dog – and I guess I can add in doing the housework and working as part of the mix. New activities are bound to give me aches and pains that last for weeks, while stopping my usual routine also brings me aches and pains that last for weeks. So boring consistency is the name of the game. And as I’ve previously blogged that means I look for a variety of different movement options in my repertoire.

Everyday hassles

The one thing that makes my life difficult is when I develop a new pain in a part of my body that doesn’t usually feel uncomfortable. Like most people living with persistent pain, I’ve developed an awareness of “my normal” (see this study by Strong & Large, 1995, for a nice description of this aspect of living with pain, one that is not often discussed). I know the usual pattern of my pains – bellyache, low back pain, neck and upper back pain, wrists and fingers, and often, knees, headaches and facial pain. These are my normal – but when should I seek help for a new pain? After all, it could be simply a manifestation of my fibromyalgia (ie there is nothing medically to be found, and no real change in management). At the same time, these are new pains – one in my shoulder that feels like an impingement (painful arc), and one that’s possibly an adductor tendon thing that’s very localised and hasn’t moved for over 7 months.

The question that keeps coming back to me is whether I’m overlooking something that can be treated, or whether it’ll just settle down like most of my pains do. Essentially I’ve just kept doing what I do and ignoring it.

The difference between my situation and those of people who are not painiacs, who don’t know that their pain is largely unrelated to the state of the tissues, is that I’m immersed in pain research all day, every day. I’m not overly bothered by these new pains. I’m continuing to exercise as normal and these pains aren’t interfering with what I need and want to do in daily life (well, perhaps a little…).

I can understand why someone might ask for help for a new pain. There are no rules saying that just because you have a persistent pain disorder you’re immune from acute musculoskeletal disorders. And sometimes by treating a new pain as an acute pain, it will vanish. Though, it must be said that outcomes for people with more than 3 or 4 persistent areas of pain with low back pain are not as good as those who only have one or two (Nordstoga, Nilsen, Vasseljen et al, 2017), nor of recovery and benefit from total hip and knee replacement (Wylde, Sayers, Odutola, Gooberman-Hill et al, 2017).

Points to ponder

So how do we as clinicians help people who must live with persistent pain?

  • Do we consider the meaning of the labels we give? And do we read around the experiences of those who have been given the diagnosis? Or do we, instead, rely on our own beliefs and biases when thinking about the way we handle diagnosis?
  • Do we give people an explanation for their pain that they can understand, or do we rely on currently favoured language and models without really considering what this means to the person? And do we ever check out how they’ve interpreted our explanations?
  • Do we ever discuss how to self-manage pain? Do we think about the practical implications of needing to learn to modify every aspect of life in the face of pain that will not just go away? When I compare the tasks of living well with persistent pain against those needed to cope with other disorders, pain can interfere with everything – do we talk about the impact on sex? on relaxation? on having a holiday?
  • Do we talk about what to do when a new pain turns up? Do we think about how someone can decide whether their pain is worth seeing someone about, or one they can handle? And do we even talk about the effect of having a persistent pain problem and then going on to have surgery? Do we teach people to recognise their “normal” pain, or are we afraid to teach people this because it might focus their attention on their pain?

I don’t have researched answers to these questions. I have my experience. And I’ve been working in this field a long time – yet somehow the voices of people living successfully with this pain are rarely heard.

 

Fitzcharles, M.-A., Ste-Marie, P. A., Goldenberg, D. L., Pereira, J. X., Abbey, S., Choinière, M., . . . Proulx, J. 2012 canadian guidelines for the diagnosis and management of fibromyalgia syndrome. http://fmguidelines.ca/

Nordstoga, A. L., Nilsen, T. I. L., Vasseljen, O., Unsgaard-Tøndel, M., & Mork, P. J. (2017). The influence of multisite pain and psychological comorbidity on prognosis of chronic low back pain: Longitudinal data from the norwegian hunt study. BMJ open, 7(5). doi:10.1136/bmjopen-2016-015312

Strong, J., & Large, R. (1995). Coping with chronic low back pain: An idiographic exploration through focus groups. The International Journal of Psychiatry in Medicine, 25(4), 371-387. doi:10.2190/H4P9-U5NB-2KJU-4TBN

Undeland, M., & Malterud, K. (2007). The fibromyalgia diagnosis – hardly helpful for the patients? Scandinavian Journal of Primary Health Care, 25(4), 250-255. doi:10.1080/02813430701706568

Wylde, V., Sayers, A., Odutola, A., Gooberman‐Hill, R., Dieppe, P., & Blom, A. (2017). Central sensitization as a determinant of patients’ benefit from total hip and knee replacement. European Journal of Pain, 21(2), 357-365.

Being mindful about mindfulness


I’m generally a supporter of mindfulness practice. It’s been a great discipline for me as I deal with everyday life and everything. I don’t admit to being incredibly disciplined about “making time for meditation” every day – that is, I don’t sit down and do the whole thing at a set time each day – but I do dip in and out of mindfulness throughout my day. While I’m brushing my teeth, slurping on a coffee, driving, sitting in the sun, looking at the leaves on the trees, cuddling my Sheba-dog I’ll bring myself to the present moment and take a couple of minutes to be fully present. Oddly enough I don’t do this nearly as often when I’m cold (like this morning when it’s about 8 degrees in my office!), or when I’m eating parsnip (ewwwww!), or waiting to see a dentist. Or perhaps that’s not odd at all, because I wonder if we have a skewed view on mindfulness and what it’s about.

My reason for writing this post comes from reading Anhever, Haller, Barth, Lauche, Dobos & Cramer (2017) recent review of mindfulness-based stress reduction for treating low back pain. In it, they found “MBSR was associated with short-term improvements in pain intensity (4 RCTs; mean difference [MD], −0.96 point on a numerical rating scale [95% CI, −1.64 to −0.34 point]; standardized mean difference [SMD], −0.48 point [CI, −0.82 to −0.14 point]) and physical functioning (2 RCTs; MD, 2.50 [CI, 0.90 to 4.10 point]; SMD, 0.25 [CI, 0.09 to 0.41 point]) that were not sustained in the long term.” There were only seven RCTs included in the study, with a total of only 864 participants, and many of the studies had no active control groups, so my interpretation is that there are flaws in many of the studies examining MBSR, and that it’s difficult to draw any conclusions, let alone strong conclusions.

Where do we go wrong with mindfulness? The first point about the studies included in Anhever and colleagues paper is that there is a difference between mindfulness in general and mindfulness based stress reduction – and although the difference may be minimal, it’s nevertheless worth understanding. MBSR is a full programme that includes mindfulness as one element (Kabat-Zinn, 1982). Mindfulness is a key component, yes, but the programmes include other elements.  The second point is that perhaps we’re assuming mindfulness to be something that it isn’t –  I suspect, from reading numerous articles in both the popular media and research papers, that mindfulness is being applied as another form of relaxation.

Relaxation training was introduced as part of a behavioural approach to managing stress. In pain management it’s been part of programmes since the 1970’s, particularly using forms of progressive muscle relaxation (See Dawn & Seers, 1998). The intention is to provide an experience that is incompatible with tension, and to develop the capability to down-regulate the body and mind to mitigate the stress response that is so often part of persistent pain.

Relaxation training can take many forms, and breath control is a common component. I use it often for myself, and when working with clients – I’m aiming to show people that although they may not be able to control heart rate or blood pressure, they can control breath and muscle tension. It’s useful especially as part of sleep management.

The thing with relaxation training is it’s entire purpose is to help downregulate an upregulated nervous system. Mindfulness, on the other hand, is not.

What is mindfulness about if it’s not about relaxation? Well, mindfulness has been defined in many different ways, but the one I especially like is by Kabat-Zinn (1990) “a process of bringing a certain quality of attention to moment-by-moment experience”.  This definition can be further unpacked by examining its components: “Mindfulness begins by bringing awareness to current experience—observing and attending to the changing field of thoughts, feelings, and sensations from moment to moment—by regulating the focus of attention.” (italics are mine) –  this quote is from Bishop, Lau, Shapiro and colleagues (2004) and is from a paper looking at defining mindfulness in an operational way (so we can be aware of what it means in practice, or as we teach others). These authors go on to say that this process leads to a feeling of being very alert to what is occurring in the here and now. I like to remind people that it’s about being here rather than remembering or anticipating what might.

So at least one part of mindfulness is learning how to attend to what YOU want to attend to, rather than being dragged back to memories, or forward to predictions, or to experiences or moments that you don’t want to notice at that moment.  The definition also points to noticing and experiencing what is happening, rather than thoughts or ruminations about what you’re experiencing. For people living with persistent pain, I think this is an invaluable tool for dealing with the interruptive effects of pain on attention.

A second aspect of mindfulness is an attitude – one of curiosity. When being mindful, you’re not trying to produce any particular state, instead you’re being curious about what you are experiencing, whether it’s something you’d ordinarily want to experience – or not. This approach to experience is really similar to what we’re aiming for in persistent pain management – acknowledging and being willing to experience what is, rather than attempting to avoid that experience, or quickly change it to something more palatable.

Now this aspect of mindfulness is often brought to bear on new and pleasant experiences – sometimes people are asked to mindfully eat a raisin, or mindfully examine a ballpoint pen (one of my favourites). But it’s also just as valid to bring this attitude to bear on less than pleasant experiences like my cold fingers and legs (it’s cold in my office this morning). Or to pain and where it is – and where it isn’t.

So I wonder if part of our approach to using mindfulness in pain management is incorrect. If we’re intending people to come away from mindfulness feeling relaxed and calm, perhaps we’re doing it wrong. If we think people should feel better after mindfulness, again, perhaps we’re doing it wrong. Sometimes, yes, these are the effects we’ll have. Other times, not so much. What we will always develop, over time, however, is better ability to focus attention where we want it to go, and more openness to being present to what is rather than struggling against it. And I think those are incredibly valuable tools in life, not just persistent pain management. And perhaps, just perhaps, if we began viewing our use of mindfulness in these ways, the outcomes from RCTs of mindfulness might show more of what it can do.

 

Anheyer, D., Haller, H., Barth, J., Lauche, R., Dobos, G., & Cramer, H. (2017). Mindfulness-based stress reduction for treating low back pain: A systematic review and meta-analysis. Annals of Internal Medicine, 1-9. doi:10.7326/M16-1997

Dawn, Carroll, and Kate Seers. “Relaxation for the relief of chronic pain: a systematic review.” Journal of advanced nursing 27.3 (1998): 476-487.

Kabat-Zinn, J. (1990). Full catastrophe living: Using the wisdom of your mind to face stress, pain and illness. New York:Dell.

Kabat-Zinn, J. (1982). An outpatient program in behavioral medicine for chronic pain patients based on the practice of mindfulness meditation: Theoretical considerations and preliminary results. General hospital psychiatry, 4(1), 33-47. doi:http://dx.doi.org/10.1016/0163-8343(82)90026-3

Mulling over the pain management vs pain reduction divide


I’ve worked in persistent pain management for most of my career. This means I am biased towards pain management. At times this creates tension when I begin talking to clinicians who work in acute or subacute musculoskeletal pain, because they wonder whether what I talk about is relevant to them. After all, why would someone need to know about ongoing management when hopefully their pain will completely go?

I have sympathy for this position – for many people, a bout of tendonosis, or a strained muscle or even radicular pain can ebb away, leaving the person feeling as good as new. While it might take a few months for these pain problems to settle, in many instances there’s not too much need for long-term changes in how the person lives their life.

On the other hand, there are many, many people who either don’t have simple musculoskeletal problems (ie they’re complicated by other health conditions, or they have concurrent issues that make dealing with pain a bit of a challenge), or they have conditions that simply do not resolve. Good examples of these include osteoarthritis (hip, knee, shoulder, thumbs, fingers) and grumbly old lower back pain, or peripheral neuropathy (diabetic or otherwise). In these cases the potential for pain to carry on is very present, and I sometimes wonder how well we are set up to help them.

Let’s take the case of osteoarthritis. Because our overall population is aging, and because of, perhaps, obesity and inactivity, osteoarthritis of the knee is becoming a problem. People can develop OA knee early in their life after sustaining trauma to the knee (those rugby tackles, falling off motorcycles, falling off horses, running injuries), or later in life as they age – so OA knee is a problem of middle to later age. People living with knee OA describe being concerned about pain, especially pain that goes on after they’ve stopped activities; they’re worried about walking, bending and maintaining independence – and are kinda pessimistic about the future thinking that  “in 10 years their health would be worse and their arthritis would be a major problem” (Burks, 2002).

To someone living with osteoarthritis, especially knee osteoarthritis, it can seem that there is only one solution: get a knee replacement. People are told that knee replacements are a good thing, but also warned that knee replacements shouldn’t be done “too soon”, leaving them feeling a bit stranded (Demierre, Castelao & Piot-Ziegler, 2011). Conversations about osteoarthritis are not prioritised in healthcare consultations – in part because people with knee osteoarthritis believe that knee pain is “just part of normal aging”, that there’s little to be done about it, and medications are thought to be unpleasant and not especially helpful (Jinks, Ong & Richardson, 2007).

I wonder how many healthcare professionals feel the same as the participants in the studies I’ve cited above. Do we think that knee OA is just something to “live with” because the problem is just part of old age, there’s an eventual solution, and meanwhile there’s not a lot we can do about it?

When I think about our approach to managing the pain of osteoarthritis, I also wonder about our approach to other pains that don’t settle the way we think they should. Is part of our reluctance to talk about pain that persists because we don’t feel we know enough to help? Or that we feel we’ve failed? Or that it’s just part of life and people should just get on with it? Is it about our feelings of powerlessness?

In the flush of enthusiasm for explaining the mechanisms of pain neurobiology, have we become somewhat insensitive to what it feels like to be on the receiving end when the “education” doesn’t reduce pain? And what do we do when our efforts to reduce pain fail to produce the kind of results we hope for? And the critical point, when do we begin talking about adapting to living well alongside pain?

What does a conversation about learning to adapt to pain look like – or do we just quietly let the person stop coming to see us once we establish their pain isn’t subsiding? I rather fancy it might be the latter.

Here’s a couple of thoughts about how we might broach the subject of learning to live with persistent pain rather than focusing exclusively on reducing pain:

  • “What would you be doing if pain was less of a problem?” My old standby because in talking about this I can begin to see underlying values and valued activities that I can help the person look at starting, albeit maybe doing them differently.
  • “What do you think are the chances of this pain completely going away?” Some might say this is about expectancy and I’m setting up a “nocebic” effect, but I argue that understanding the person’s own perspective is helpful. And sometimes, when a person has persistent pain and a diagnosis like osteoarthritis, their appraisal is less about catastrophising and more about holding a realistic view about their own body. It’s not about the appraisal – it’s about what we do about this. And we can use this perspective to built confidence and increase the importance of learning coping strategies.
  • “If I could show you some ways to deal with pain fluctuations, would you be interested in learning more?” All episodes of pain that persists will have times when pain is more intense than others – flare-ups are a normal part of recovering from, and living with persistent pain. Everyone needs to know some ways of going with, being flexible about or coping with flare-ups. I teach people not to focus exclusively on reducing pain during these flare-up periods. This is because even during rehabilitation we don’t want to use pain as a guide (it can be a cruel task-master). We know that rehabilitation can increase (temporarily) pain while the body habituates to new movement patterns, the brain gets used to new input, and the homunculus gets redefined. It’s great to be able to teach strategies that increase the sense of safety, security and down-regulation that can be lost in the initial onslaught of pain.

To summarise, not all pain problems settle. We can help everyone to be more resilient if we begin talking about ways of coping with flare-ups even during subacute pain, particularly if we avoid an excessive focus on trying to avoid them. Instead, we can begin to help people feel confident that flare-ups always settle down, and that they can manage them effectively by using effective self management.

 

Burks, K. (2002). Health concerns of men with osteoarthritis of the knee. Orthopaedic Nursing, 21(4), 28-34.

Cohen, E., & Lee, Y. C. (2015). A mechanism-based approach to the management of osteoarthritis pain. Current Osteoporosis Reports, 13(6), 399-406.

Demierre, M., Castelao, E., & Piot-Ziegler, C. (2011). The long and painful path towards arthroplasty: A qualitative study. J Health Psychol, 16(4), 549-560. doi:10.1177/1359105310385365

Jinks, C., Ong, B. N., & Richardson, J. (2007). A mixed methods study to investigate needs assessment for knee pain and disability: Population and individual perspectives. BMC Musculoskeletal Disorders, 8, 59.

What is pain for?


We’re told we need pain – without the experience, we risk harming our bodies and living short lives. With pain, and for most people, we learn to not go there, don’t do that, don’t do that AGAIN, and look at that person – don’t do what they’re doing! Thirst, hunger, fear, delicious tastes and smells, the feelings of belonging, of safety and security, of calm and comfort: all of these are experiences we learn about as we develop greater control over our bodies.

Pain is an experience we learn to associate with actual or possible threat to “self”. Let’s take a moment to think about what “self-hood” means.

If I ask you “who are you?” you’ll tell me your name, probably your occupation, maybe where you live and who you live with. Baumeister (1997) suggests our sense of self is about “the direct feeling each person has of privileged access to his or her own thoughts and feelings and sensations.” He goes on to say “it begins with the awareness of one’s own body and is augmented by the sense of being able to make choices and initiate action.” We learn about who we are through interacting with the environment, but also as we interact with other people and begin to sort through our roles, contributions and relationships.

Of course, our sense of self changes over time and is reciprocally influenced by choices we make as well as opportunities (and threats) around us, both environmental and social.

We work really hard to avoid threats to our sense of self. For example, I’ll bet we’ve all seen that person who steadfastly refuses to stop colouring his hair, wearing the same clothing styles as he did in his 20’s, holding on to the same habits as he did at the same age even when he’s now in his 50’s, has a paunch, and still looks for partners 20 years younger than he is…  He still believes he’s that young stud despite the evidence in the mirror. And of course the same applies to women perhaps more so!

So what happens when our mind/body is threatened? How do we know it? And what do we do about it?

In this instance I’m not talking about social threats, though there’s interesting research suggesting that being socially excluded has similar neurobiological effects as being physically threatened (or experiencing pain – though this may reflect the distress we experience when we’re hurt and when we’re socially excluded – see Iannetti, Salomons, Moayedi, Mouraux & Davis, 2013; Eisenberger, 2015). I’m instead talking about threats to our physical body. Those threats may be violence from another person, physical trauma to the body, or the threat of physical harm to the body. When we experience these kinds of threats, and once an aspect of mind/body has disentangled the threat evaluation from whatever other goals we’re currently engaged in, we experience pain. Tabor, Keogh and Eccelston (Pain, in press) define pain in terms of action: an experience which, as part of a protective strategy, attempts to defend one’s self in the presence of inferred threat.

So pain is there to help us maintain an intact sense of self in the presence of threat – threat that we’ve inferred from our context (or drawn a conclusion from incomplete data). It’s part of a system that works to maintain “us” in the face of multiple threats that we encounter.

Tabor, Keogh and Eccleston also argue that pain is an experience designed to intrude on awareness to show that “boundaries have been reached and action must be taken”. Pain is one way our mind/body can give us an indication of boundary – just how much, or how little, we can do. For example, I experience pain when I bend my thumb down to reach my wrist – it’s one way I can learn how far I can bend without disrupting something! The purpose of that pain is to help “me” defend against doing really dumb things, like stretching my thumb out of joint!

Interestingly, when we feel overwhelmed by our pain, when we can’t defend against it (because it feels too intense, has meanings that threaten our deepest sense of self) we tend to withdraw from responding to everything else – our conversations stop, we don’t notice other people or events, we pull into ourselves and ultimately, we can lose consciousness (think of the accounts of early surgery without anaesthesia – the surgeons were kinda grateful when the patient lapsed into unconsciousness because at last they weren’t writhing to get away – see Joanna Bourke’s book “The Story of Pain” for some harrowing stories!).

When we lose consciousness, our sense of self disappears. We lose contact with the “what it is to be me”.

Our sense of self also disappears when we experience pain we can’t escape and we can’t make sense of. Throughout the time while people are trying to label their pain, establish the meaning of their symptoms, and while people are searching for a solution to their pain, people’s experience of both time and “who I am” is threatened (Hellstrom, 2001).

To me, this is one of the primary problems associated with pain – and one we’ve almost completely ignored in our healthcare treatments. All our treatments are aimed at helping “get rid of the pain” – but what isn’t so often incorporated in these efforts is a way of engaging and rebuilding a resilient sense of self. So while the pain may ebb away, the “self” remains feeling vulnerable and threatened, especially if there’s any hint of pain returning.

What can we do better? Perhaps talk about what vision a person has of themselves as a “self”. Help them work towards becoming the “self” they believe they are – or at least helping them express the underlying values that their “self” has previously been expressing. That way perhaps people can find flexible ways to express that “self” – which will make them more capable of living well under any circumstances.

 

Baumeister, R. F. (1997). Identity, self-concept, and self-esteem: The self lost and found. Hogan, Robert [Ed], 681-710.

Bourke, J. (2014). The story of pain: From prayer to painkillers: Oxford University Press.

Eisenberger, N. I. (2015). Social pain and the brain: Controversies, questions, and where to go from here. Annual review of psychology, 66, 601-629.

Hellstrom, C. (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

Iannetti, G. D., Salomons, T. V., Moayedi, M., Mouraux, A., & Davis, K. D. (2013). Beyond metaphor: Contrasting mechanisms of social and physical pain. Trends in Cognitive Sciences, 17(8), 371-378.

Tabor, A., Keogh, E. and Eccleston, C. (2016) Embodied pain— negotiating the boundaries of possible action. Pain. ISSN 0304- 3959 (In Press)

Empathy and catastrophising influence pain inhibition


When I went to occupational therapy school I was introduced to nociception and the biological underpinnings of pain. I wasn’t, at that time, taught anything about the brain, attention, emotions or any social responses to pain behaviour. Like most health professionals educated in the early 1980’s, pain was a biological and physical phenomenon. I suppose that’s why it can be so hard for some of my colleagues to unlearn the things they learned way back then, and begin to integrate what we know about psychological and social aspects of our pain experience. Because pain is a truly biopsychosocial experience. Those pesky psychosocial factors aren’t just present in people who have difficulty recovering from pain, they’re actually integral to the entire experience.

Anyway, ’nuff said.

Today I stumbled across a cool study exploring two of the psychosocial phenomena that we’ve learned are involved in pain. The first is catastrophising. And if you haven’t got your head around catastrophising it’s probably time to do so. It’s one of the strongest predictors of disability (Edwards, Dworkin, Sullivan, Turk & Wasan, 2016). Catastrophising is the tendency to “think the worst” and consists of ruminating (brooding on), magnifying (over-estimating the negative impact) and helplessness (feeling as if there’s nothing you can do).  The second is empathy, or the ability to sense other people’s emotions, coupled with the ability to imagine what someone else might be thinking or feeling. Empathy is not the same as sympathy which seems to be about the emotions a person experiences while observing another’s emotional state. In fact, separate parts of the brain are involved in the two experiences (Cuff, Brown, Taylor & Howat, 2014).

Back to the study. This study examined conditioned pain modulation in partners observing their partner undergoing a painful experience. It was carried out by Gougeon, Gaumond, Goffaux, Potvin and Marchand (2016) in an attempt to understand what happens to the pain experience of people watching their loved ones in pain. The experimental protocol was (1) baseline; (2) assessing pain VAS 50; (3) pre-CPT heat pain testing (thermode preimmersion at a fixed temperature); (4) CPT (either at 201Cor71C); and (5) post-CPT heat testing (thermode postimmersion at the same fixed temperature). What they did was ask the participants to submerge their right hand in a freezing cold waterbath while video recording them. They then asked their partners to place their right hand in lukewarm water while watching the video recording. Participants were asked to rate their pain intensity.

What they found was the higher the catastrophizing score was, stronger was their descending pain inhibition when they were watching either themselves or their spouse in pain. In women, the more empathic the women were, the better was their descending pain inhibition when they observed their spouse in pain.

This is extraordinary. Firstly, the finding that there was a correlation between catastrophising score and descending inhibition contradicts other research studies – Gougeon, Gaumond, Goffaux, Potvin and Marchand suggest that although cognitive and emotional processes underlying catastrophising increase pain perception and decrease inhibition, their experimental design may have increased pain perception during the conditioned stimulus which may have triggered more conditioned pain modulation. They also suggest that the catastrophising level of participants increases their perceived pain, explaining why it correlates with conditioned pain modulation efficiency.

Secondly, women were more distraught than men by observing pain in others. Adopting the perspective of a loved-one elicited stronger activation in regions involved in the “pain” matrix than adopting the stranger’s perspective (Cheng et al), and the authors suggest that empathy is a powerful factor involved in pain modulation while observing someone in pain. This shows that descending inhibition is influenced by physical stimulus characteristics (such as intensity or location), as well as personal cognitive dimensions. A far cry from the notion that psychosocial factors play little part in modulating our pain experience.

What does this actually mean for us?

Well, to me it suggests that we need to be aware of our own empathic response to observing someone else who is experiencing pain. Let’s put it this way: if I’m an especially empathic person (and especially if I tend to catastrophise) and I see people who are experiencing pain in my clinical practice, my own emotional and cognitive response to seeing people may influence my behaviour and practice. For example, I might be less willing to tell people that I don’t have a way to reduce their pain. I might pursue more “heroic” healthcare – send people off for more treatments, try for longer with unsuccessful treatments “just in case”, I might even send people away from my care because I find it hard to tolerate being around someone who “doesn’t respond”.

You see, being empathic and catastrophising tends to elevate feelings of distress in the presence of pain. If we don’t have effective ways to manage our own distress when we are in the presence of someone who is indicating they’re sore, we’re at greater risk of developing burnout and of feeling frustrated (Gleichgerrcht & Decety, 2014).

For this reason I’m a fan of using mindfulness because it does help people to step back from the emotional judgements of experience, and in particular the negative impact such judgements have on both interactions and emotions (Dobkin, Bernardi & Bagnis, 2016).

 

Cheng Y, Chen C, Lin CP, et al. Love hurts: an fMRI study. Neuroimage. 2010;51:923–929.

Cuff, B. M. P., Brown, S. J., Taylor, L., & Howat, D. J. (2014). Empathy: A review of the concept. Emotion Review, 8(2), 144-153. doi:10.1177/1754073914558466

Decety, J., Yang, C.-Y., & Cheng, Y. (2010). Physicians down-regulate their pain empathy response: An event-related brain potential study. Neuroimage, 50(4), 1676-1682.

Dobkin, P. L., Bernardi, N. F., & Bagnis, C. I. (2016). Enhancing clinicians’ well-being and patient-centered care through mindfulness. Journal of Continuing Education in the Health Professions, 36(1), 11-16.

Edwards, R. R., Dworkin, R. H., Sullivan, M. D., Turk, D. C., & Wasan, A. D. (2016). The role of psychosocial processes in the development and maintenance of chronic pain. The Journal of Pain, 17(9, Suppl), T70-T92.

Gleichgerrcht, E., & Decety, J. (2014). The relationship between different facets of empathy, pain perception and compassion fatigue among physicians. Frontiers in behavioral neuroscience, 8, 243.

Gougeon, V. M., Gaumond, I. P., Goffaux, P. P., Potvin, S. P., & Marchand, S. P. (2016). Triggering descending pain inhibition by observing ourselves or a loved-one in pain. Clinical Journal of Pain, 32(3), 238-245.

On the value of doing, being and becoming


An old occupational therapy tagline was “doing, being, becoming”. The meaning of this phrase is intended to point to the tight relationship between what we do, who we are, and how we develop and grow. As I read blogs discussing an increased emphasis on “real world” outcomes there is something missing from the narratives: that intangible quality that marks the difference between colouring in – and painting. Or filling in a form – and writing a poem. Going from room to room – and dancing. Something about expressing who we are and what we value.

Values are things we hold dear. They are principles, or “desired qualities of behaviour”, life directions (not destinations).

The things we do (our actions) are inevitably infused with our values because how we do things (sloppily, carefully, neatly, with gay abandon, enthusiastically) is an expression of what we think is important. To give you an example, I occasionally vacuum my house. Sometimes I’ll do it really thoroughly – because I love seeing a sparkling house. Sometimes I’ll do it with a flick and a promise – because it’s a beautiful day and I want to get out of the house. In both instances I’ve expressed something about what is important to me – I do enjoy seeing my home looking tidy and organised. I don’t have to have reasons for liking my home this way, I just do. When I do a quick flick through my home it’s not because I’m lazy or I don’t care, it’s because I value getting out of the house more than I value having a tidy and organised home on that day.

Values don’t have to be explained. We don’t have to have reasons for holding them. They’re something we choose to place as important.

Why be concerned about values? Well, they underpin our choices. They provide motivation towards some activities, and away from others.

There is a lot of emphasis at the moment on people with osteoarthritis “getting fit” and “doing exercise”. The current approach in New Zealand is to provide community-based programmes to people who have just been declined joint replacement surgery (because we can’t offer surgery to everyone who wants it). Uptake hasn’t been enormous, and to be honest I’m not surprised. People who haven’t been exercisers are not very likely to begin an exercise programme that is undoubtedly going to increase their pain in the short-term (because, duh, movement hurts!) even if the programme offers hope of improved pain and function in the future. Putting this into a “values” and “motivation” perspective, people usually value comfort over discomfort. They value short-term outcomes over long. If they’ve never exercised much, it’s clear that exercise isn’t something they value. To help them engage in an exercise programme, we need to work hard to identify values they hold dear so they’ll look to those to over-ride the value of comfort over discomfort.

An alternative might be to think of different ways of expressing values that will concurrently meet the goal of increased exercise. For example, I don’t enjoy exercise per se. In fact I’ve boasted that my body is an exercise-free zone! To tell the truth, that’s not exactly the case. I just don’t do “exercises”. Instead I dance. I get out of my chair for five minutes every 20 minutes and go do something involving my whole body. I garden. I play with the dog. I go out in the kayak. I walk miles when I’m fishing.

Some people would argue that “there’s no evidence base for this” – but I think we’ve forgotten that exercises are simply a planned and repetitive form of moving our bodies because we don’t do that nearly as much in modern times as we used to even in the early 1900’s, let alone in stone-age times. I don’t think hunter-gatherers “do exercises” except as training for something like war or hunting (to increase skill).

Living life with chronic pain must become a lifestyle. And it needs to be a lifestyle that has some life to it – not an endless series of “things we must do for health”, unless “health” is a particular value. If life is just about “things we do for health” doesn’t that constantly remind people of what they don’t have? That they’re not healthy? Making them patients instead of people? For most people, to be healthy is a means to an end: they want to connect with family, express who they are, contribute to their society, love and be loved. If the person in front of us isn’t into exercise, it’s OUR job to work out what they value and connect what we think is important to what they think is important, or we will simply fail.

Some simple steps to identify values – try these out in the clinic!

  1. When a person attends your clinic, they’re expressing a value, that they care about something. Asking the person “what do you hope from coming to see me” is a pretty common opening line. Try extending this by, after they’ve answered, asking “why is that important to you?” or “what would it mean you could do” or “how would that make a difference to you?”
  2. If a person says they don’t like something, try suggesting to them that they value the exact opposite. eg if they’ve said they really don’t like running, ask them why: “it’s boring” might be the answer. This answer suggests they like variety and excitement in their exercise routine. Then you can ask them what activities they see as exciting – maybe instead of running, they’d enjoy virtual boxing (bring out the Oculus Prime!), or a scavenger hunt, or geocaching.
  3. Use the 1 – 10 “readiness ruler” technique from Motivational Interviewing. Ask the person to draw a line and put 1 at one end, and 10 at the other. 1 = not at all important and 10 = incredibly important. Then ask them to put a cross on the line to indicate the importance they place on doing exercise/healthy living/pain management (whatever you’re asking them to do). Then (and this is important!) ask them why they put that mark so high. This is important – even if that mark is down on 2!! Ask them why they put it there and not lower. This will help elicit important values that you can then use to connect what you want them to do with what they value.

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.

Ups and downs and rocking and rolling


What a week it has been! Not only an unexpected result in the US elections, but also a very large earthquake north of Christchurch, along with a tsunami alert for the entire eastern coastline of New Zealand. Luckily I live far enough away from the shoreline that I didn’t have to evacuate, but the sirens certainly work!

As a result of these events, which I firmly believe are NOT associated except in time, the post I was going to make seems a bit redundant, so I’m going to talk about resilience and what it really means.

For someone who has lived through thousands of earthquakes since September 2010, resilience is almost a dirty word. People living in Christchurch are a bit tired of being called resilient.  You see, it’s not the quakes that are the problem – it’s the aftermath. The “new normal” that we’ve been living through these past years. The thousands of road cones lining almost every street. The constant detours as bits of road are dug up and sewerage, storm water and water pipes relaid. The delays. The ongoing processing needed to work out “where am I?” in the streets we used to know so well.

Resilience is intended to refer to “bounce back”. The thing is, I don’t think we bounce back to exactly the way we were before – we’re irrevocably changed by all experiences, but especially ones as significant as the earthquakes, or even political changes. That we don’t “return to normal” is one of the main reasons I don’t believe reports of people “going back to normal” if pain is completely removed. Why? Because people actively process and make meaning from everything that happens to them – and the meanings that are given to experiences don’t ever completely go.  We know, for example, that we can’t “unwire” nerves that have fired together, so what actually happens is that alternative paths or connections between nerves are formed. This means that under the right circumstances, those original paths will fire again… And people who have experienced chronic pain will, even if their pain eventually goes, know exactly what that pain meant, how it affected them, and I’m certain will be very aware of any new pain that seems to be similar to the one that was just there.

Resilience to me is therefore not so much about “bouncing back” as it is about being able to take stock of what actually IS, determine the paths that lead on in the direction of important values, and then choosing to take those paths. And this can often mean taking detours because old paths aren’t negotiable any more. That can be, and is, disturbing. It can be frustrating, fatiguing and far more demanding than the idea usually invoked by the word “resilience”.

So, in the next days and weeks, let’s think less about being resilient, and more about being flexible – flexibly persisting, if you will. We need to persist to get anywhere, do anything. We need to be flexible about how we get there and how we do what we value. We’ll need passion, but more than passion, we’ll need commitment.

 

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.