coping strategies

Exercise? Who me? Yoga or physiotherapy or education…


Exercise, while one of The Most Important self management approaches for persistent pain, is not an easy sell to someone who is experiencing pain. Especially not if that exercise looks like huffing and puffing, hauling on bits of metal in a gym, or wearing lycra. Not to mention the “sports drinks”…  Those things aside, exercising is a good thing. You heard it from me, and I have declared my body an exercise free zone! The thing is, what kind of exercise, for what purpose, and how to get introduced to it.

Personally I’m a fan of exercise that achieves something else other than “getting fit”. I like gardening, I love dancing, I enjoy cycling (especially to the store to get a GREAT coffee!). Walking the dog is fun. Swimming (especially snorkeling) is awesome! I like my exercise to do more than bring on the endorphins, especially as I don’t get much of that post-exertional analgesia that many people do – and believe me, they do (Ellinson, Stegner, Schwabacher, Koltyn & Cook, 2016). I like my exercise to look like the things I need or want to do, so that when I need to do ’em, I’m in fit state to get on and do ’em.

So what kind of exercise works best? One sage told me “the exercise the person does!” and there is some truth to that, so when I begin talking to someone about exercise, I’m looking for something they can do regularly, that fits into their lifestyle, that makes them feel good, and has some other benefit to them. That benefit might be the social thing – going to a box-fit class with a group of others all bent on getting their fix of play-fighting. It might be the solitary thing – long walks along the beach with the dog for company. It might be the music – in my case, it’s belly dance (and I dare anyone to do a 5 minute shimmy drill while keeping an isolated upper body, a loose shimmy and smile!).

I like the idea of having variety – who says we need to do the same kind of exercise every day? So it’s a wet day and I don’t fancy taking my bike out in the rain, I can turn to my dance practice, or do the dusting, or vacuum the floors. It’s a frosty day and I can go for a brisk walk and take photographs of gorgeous sparkly frosty droplets while Sheba-the-wonderdog huffs steam and sniffs at the local scents. If it’s a warm day, why not head to the pool for a lap or two? If it’s a busy day and I don’t have time, what about some “exercise snacks”? Five minutes of exercise every 25 minutes adds some pretty quickly, so it’s lunges and chair dips and wall presses and shimmy practice in between writing.

Over time we’re seeing more research looking particularly at yoga for persistent pain of all kinds. Yoga comes in many different forms, and in this case I’m guessing the more extreme forms of hot yoga and contortion is not being studied. Some of the studies are appearing in rather eminent journals, like this one from the Annals of Internal Medicine and authored by a very large team including Saper, Lemaster, Delitto and colleagues (2017).

This study is a “non-inferiority” study, looking to establish whether yoga or physiotherapy, or indeed education, can help people living with chronic low back pain. Now I’m not going to do a blow-by-blow analysis of the study, that’s for you to do. What I am going to do is look at what the yoga consisted of – and see why, perhaps, yoga is getting so much research interest. BTW, yoga was found to be non-inferior to physiotherapy, and both yoga and PT were more likely than education to have a clinically meaningful response, although neither yoga nor PT were superior to education.

This is the basic format of the yoga class: Each class began with relaxation and meditation exercises, yoga breathing, and yoga philosophy. It continued with yoga poses and
concluded with relaxation. Pose variations and aids (such as chair, strap, and blocks) accommodated various abilities. Thirty minutes of daily home practice, facilitated by a DVD, a manual, and take-home yoga supplies, was strongly encouraged.

Yoga appeals to many because it seems to begin where people are at – it’s not huffy-puffy, things don’t jiggle, and generally the classes begin and end with the ritual of breathing and meditation. I like the idea of yoga (and yes, I’ve done a class or two!), because it doesn’t involve a lot of gadgets, you can do it alone or in a group, and it feels good. What I don’t like about yoga is the need to get effective and consistent feedback about how well you’re performing the poses, especially in the beginning, which means it can be difficult to do on your own without a teacher.

For people who find exercising both difficult and painful, yoga is a good place to start. I think attending classes is crucial (or at least having an instructor and a mirror!). Learning to use the meditation and breathing is integral to the exercise – and it’s this that I think makes yoga an effective addition to the exercise toolkit. What I’m less sure of is whether it’s better than any other form of exercise – or, in my case, the many different types of movements that I use in my weekly routine. And there’s the rub. As an occupational therapist, exercise is something people choose to do as a form of occupation (valued and meaningful activity). I also enjoy a bunch of other movement-based occupations, and to me these are as valid as yoga or the PT exercises included in this study. What my approach lacks, however, is a researched basis for it.

But here’s the thing: to date the research supporting exercise for people with persistent pain shows modest effects. And those effects are completely lost if the person doesn’t do the exercise. So why not have a wide range of whole-body movement practices to draw on, allowing the person to pick and choose and get out and do something every day, even if it doesn’t fit with our modern notions of what exercise should be?

 

 

Ellingson, L. D., Stegner, A. J., Schwabacher, I. J., Koltyn, K. F., & Cook, D. B. (2016). Exercise Strengthens Central Nervous System Modulation of Pain in Fibromyalgia. Brain Sciences, 6(1), 8. http://doi.org/10.3390/brainsci6010008

Saper, R. B., Lemaster, C., Delitto, A., & et al. (2017). Yoga, physical therapy, or education for chronic low back pain: A randomized noninferiority trial. Annals of Internal Medicine. doi:10.7326/M16-2579

Advertisements

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 to do with the results from the PCS


The Pain Catastrophising Scale is one of the more popular measures used in pain assessment. It’s popular because catastrophising (thinking the worst) has been identified as an especially important risk factor for slow recovery from pain (Abbott, Tyni-Lenne & Hedlund, 2010), for reporting high levels of pain intensity (Langley, 2011), and for ongoing disability (Elfving, Andersoon & Grooten, 2007). I could have cited hundreds more references to support these claims, BTW.

The problem is, once the PCS is administered and scored: what then? What difference does it make in how we go about helping a person think a little more positively about their pain, do more and feel more confident?

If you haven’t seen my earlier posts about the PCS, take a look at this, this, and this for more details.

Anyway, so someone has high scores on rumination, helplessness and magnifying – what does this mean? Let’s say we have two people attending the clinic, one has really high scores on all three subscales, while the other has low or average scores. Both have grumbly old low back pain, both have had exercises in the past, both are finding it tough to do normal daily activities right now.

For a good, general pain management approach to low back pain, and once red flags are excluded (yes, the “bio” comes first!) this is what I do. I establish what the person thinks is going on and ask if it’s OK to talk about pain neurobiology. Together we’ll generate a pain formulation, which is really a spaghetti diagram showing the experience as described by the person (I used guided discovery to develop it). I then ask the person what they’d be doing if their pain wasn’t such a problem for them, perhaps what they’re finding the most frustrating thing about their situation at the moment. Often it will be sleep, or driving or cooking dinner, or perhaps even getting clothes on (shoes and socks!). I’ll then begin with helping the person develop good relaxed breathing (for using with painful movements), and start by encouraging movement into the painful zone while remaining relaxed, and tie this in with one of the common activities (occupations) the person needs or wants to do. For example, I’ll encourage bending forward to put shoes and socks on while breathing in a relaxed and calm way. I’ll be watching and also encourage relaxing the shoulders and any other tense parts of the body. For someone who is just generally sore but doesn’t report high pain catastrophising, I will also encourage some daily movements doing something they enjoy – it might be walking, yoga, dancing, gardening, whatever they enjoy and will do regularly every day for whatever they can manage. Sometimes people need to start small so 5 minutes might be enough. I suggest being consistent, doing some relaxation afterwards, and building up only once the person has maintained four or five days of consistent activity. And doing the activity the person has been finding difficult.

If the person I’m seeing has high scores on the PCS I’ll begin in a similar way, but I’ll teach a couple of additional things, and I’ll expect to set a much lower target – and probably provide far more support. Catastrophising is often associated with having trouble disengaging from thinking about pain (ruminating), so I’ll teach the person some ways to deal with persistent thoughts that hang around.

A couple to try: mindfulness, although this practice requires practice! It’s not intended to help the person become relaxed! It’s intended to help them discipline their mind to attend to one thing without judgement and to notice and be gentle with the mind when it gets off track, which it will. I ask people to practice this at least four times a day, or whenever they’re waiting for something – like the jug to boil, or while cleaning teeth, or perhaps waiting for a traffic light.

Another is to use a “15 minutes of worry” practice. I ask the person to set a time in the evening to sit down and worry, usually from 7.00 – 7.15pm. Throughout the day I ask the person to notice when they’re ruminating on their situation. I ask them to remind themselves that they’re going to worry about that tonight and deliberately put that worry aside until their appointment with worry. Then, at 7.00pm they are asked to get a piece of paper and write ALL their worries down for a solid 15 minutes. No stopping until 15 minutes is over! It’s really hard. Then when they go to sleep, I ask them to remind themselves that they’ve now worried all their worries, and they can gently set those thoughts aside because they won’t forget their worry, it’s written down (I think worry is one way a mind tries hard to stop you from forgetting to DO something about the worry!). People can throw the paper away in the morning because then it begins all over again.

Usually people who score high on the PCS also find it hard to be realistic about their pain, they’ll use words that are really emotive and often fail to notice parts of the body that aren’t in pain. By noticing the worst, they find it tough to notice the best.  I like to guide people to notice the unloved parts of their body, the bits that don’t hurt – like the earlobes, or the belly button. I’ll offer guidance as to what to notice while we’re doing things, in particular, I like to guide people to notice those parts of the body that are moving smoothly, comfortably and that look relaxed. This is intended to support selective attention to good things – rather than only noticing pain.

Finally, I give more support to those who tend to be more worried about their pain than others. So I might set the goals a little lower – walking for five times a week, two days off for good behaviour rather than every day. Walking for five minutes rather than ten. And I’ll check in with them more often – by text, email or setting appointments closer together. It’s important for people who fear the worst to experience some success, so setting small goals that are achieved can build self efficacy – especially when I try hard to offer encouragement in terms of what the person has done despite the odds. So, if the person says they’ve had a real flare-up, I’ll try to boost confidence by acknowledging that they’ve come in to see me even though it’s a bad pain day, that they’ve tried to do something instead of nothing, that talking to me about the challenge shows guts and determination.

People who see the glass as half empty rather than half full are just people. Like you and I, they’re people who have a cognitive bias. With support, we can help people view their pain differently – and that process applies to all of us, not just those with high scores on the PCS.

 

Abbott, A. D., Tyni-Lenne, R., & Hedlund, R. (2010). The influence of psychological factors on pre-operative levels of pain intensity, disability and health-related quality of life in lumbar spinal fusion surgery patients. Physiotherapy, 96(3), 213-221. doi:10.1016/j.physio.2009.11.013

Elfving, B., Andersson, T., & Grooten, W. J. (2007). Low levels of physical activity in back pain patients are associated with high levels of fear-avoidance beliefs and pain catastrophizing. Physiotherapy Research International, 12(1), 14-24.

Langley, P. C. (2011). The prevalence, correlates and treatment of pain in the european union. Curr Med Res Opin, 27(2), 463-480. doi:10.1185/03007995.2010.542136

How do help someone change their beliefs about pain?


This post is my little attempt to educate clinicians! Some of you will know I really don’t like the term “pain education” or “educating” people. The reason doesn’t go back as far as the original definition of “educate” which is, according to the Online Etymology Dictionary “educate (v.) Look up educate at Dictionary.commid-15c., “bring up (children), to train,” from Latin educatus, past participle of educare “bring up, rear, educate” (source also of Italian educare, Spanish educar, French éduquer), which is a frequentative of or otherwise related to educere “bring out, lead forth,” from ex- “out” (see ex-) + ducere “to lead” (see duke (n.)). Meaning “provide schooling” is first attested 1580s. Related: Educated; educating.”In other words, educate means to “bring out, lead forth”.

Pain education is a buzz word right now. It’s not a new concept, but it certainly has been hitting the consciousness of a whole bunch of people who previously would have thought of pain either in terms of “oh it’s something to do with the tissues” or “if I can’t find the cause, it must be something in the person’s head”.  Learning about pain and the neurobiology of pain is an excellent thing, a wonderful first step for clinicians who may have missed out on learning this stuff in undergraduate training, and I’m not disrespectful of the need to know more. What I’m a lot uneasy about is thinking of pain education as a primary means for pain reduction, particularly when it’s carried out as “pain ed” where information is dumped without finesse.

We know that simply giving people information in order to change behaviour does not work unless the person is at the “preparation” stage of making a change.  In fact, mass media campaigns about back pain education haven’t been altogether successful despite an early study in Australia showing some really positive gains (Buchbinder, Jolley & Wyatt, 2001; Gross, Deshapnde, Werner, Reneman, Miciak & Buchbinder, 2012). Despite this, there have been numerous studies showing that there are positive gains if people experiencing pain are given good information about pain neurobiology (Louw, Diener, Butler & Puentedura, 2011; Louw, Diener, Butler & Puentedura, 2013; Louw, Puentedura & Mintkin, 2012; Moseley, Nicholas & Hodges, 2004). So… why am I so antsy about pain “education”?

Well, mainly because I think we’re often not trained to do “education” very well. We’re clinicians, we’ve spent years learning about our profession, but on the whole we haven’t been taught to teach – or even, truth to tell, how to help other people change their minds! With the exception of my psychology colleagues, I think most of us learned about what to tell people, rather than how to lead or guide people. And none of us like to be told what to do!

So… how do I go about helping someone think differently about their pain?

The first thing is, I’m not “educating”. The end result of “education” can simply be “Oh goody now I can get on with the real work”, “Yay! I’ve told them what to think, and now if they don’t get it, it’s their problem.” I think if we can change our language we might begin to approach this part of our therapy a little differently. If we aim to help people understand, think differently, reconceptualise or make sense of their experience we can begin to use a whole range of approaches to get to that end result. If we “educate” we might only think about the process of giving information.

How else can we help people think differently about their pain? I think it’s a process of helping people discover for themselves because we know this is a more successful process for learning than if we just give the answers. Think about kids – if we tell a kid how to ride a bike, they probably won’t be very good at riding even though they might know all about centrifugal forces, and inertia, and coordination and how a bike is made.  The reason we want to give information is that it might help give a kid more knowledge about what to think about when they’re riding – but it won’t change that they  need to hop on the bike to learn to ride it. Similarly, in helping people who are experiencing pain, we want people to be able to do things again – and while knowing more about pain might help reduce the fear from not knowing, but in the end people have to DO something differently to truly enact change.

How do I help someone discover for themselves? I begin by asking what people understand about their pain. I ask them what goes through their mind when they experience pain, what they think is going on and how they feel. I draw a diagram like the one below, and begin to fill in the gaps.

I will ask then what they think is going on – their theory – and add that into the diagram. I might ask what do they think that means for them? What do they think they need to do now? What would it mean if that was true? What would it mean if it wasn’t true? What would it say about them if it wasn’t true? How would they know if it was true?

I might ask about other experiences in the body, other sensations, things the person might not notice – maybe by saying “what do you notice in your shoulders? your breathing? your hands?” and so on. And then what these things mean as well. I’m primarily seeking information on the presence of sympathetic arousal (“stress response”) because this often presents at the same time as people experience pain – pain can be anxiety-provoking, so it’s a common reaction but often not noticed.

I include external factors – like what other people might have said, their response to the person’s experience – like advice, warnings, or even behaviours. When I think of other people I often separate “healthcare professionals”, “family”, and “work”, and sometimes include recent media campaigns that may have influenced how the person interprets his or her pain.

The resultant diagram can look a lot like this – but with the person’s own comments and phrases contained within each circle:

20160510_110132The idea behind listening and completing a diagram like this is to help me as a clinician to really hear what the person has been experiencing. We know all these aspects affect the experience of pain, but so often we go in with our own ideas about the problem, and fail to put together this complex web of interactions that help us answer the two questions:

  • Why is this person coming to see me in this way at this time?
  • What can be done to reduce both distress and disability?

My intention at the time I work through this diagram isn’t to change anything. It’s simply to listen and reflect what I’ve heard and to assemble that information in a way that makes some sense. It’s only after I’ve done this that I feel OK to begin to consider intervention/treatment priorities. For some people there is no point in trying to change what they believe – anything I say is likely to be countered by all these other things the person is hearing from everyone else. So instead I might begin by exploring movements and how these might be influencing what the person is focusing on. Or I might think about the impact or effect of avoiding things and talk through “what if” pain was less of a problem.

Sometimes I will address the thoughts and beliefs, basing my suggestions on looking at either the evidence that the belief is true – or the effect of that belief on the person’s experience. We might work out some small behavioural tests to see what happens if the person tries something out – maybe trying a movement they’ve avoided, just to see if their memory of how it was is accurate, or as bad as they recall.

When, and only when, the person indicates they want to know more about their pain, or they’ve found that their assumptions about pain don’t work out (because we’ve established some discrepancies between what the person thinks they’ve been told and their own experiences), then I can begin to go down the pain neurobiology education route – but it’s embedded in two important things:

  1. That they’ve indicated a need and readiness to know more, and
  2. I’ve already listened and tried to understand where they’re coming from

To my mind, doing anything before these two conditions are met is bound to be met with resistance, and risks being either ignored or rejected.

 

To summarise: giving information alone is not enough (usually) to help someone change their understanding of their own pain.

Some people don’t need to be given the whole pain education thing – what they want is to be heard and understood.

People learn more by doing, and if we want to help people do more (ie be less disabled and distressed by their pain) then we not only need them to know more, we need to help them DO more.

That means a lot less talking and a lot more doing.

Telling is less helpful than exploring together.

 

Buchbinder, R., Jolley, D., & Wyatt, M. (2001). 2001 volvo award winner in clinical studies: Effects of a media campaign on back pain beliefs and its potential influence on management of low back pain in general practice. Spine, 26(23), 2535-2542. doi:dx.doi.org/10.1097/00007632-200112010-00005

Gross, D. P., Deshpande, S., Werner, E. L., Reneman, M. F., Miciak, M. A., & Buchbinder, R. (2012). Fostering change in back pain beliefs and behaviors: When public education is not enough. Spine Journal: Official Journal of the North American Spine Society, 12(11), 979-988.

Louw, A., Diener, I., Butler, D. S., & Puentedura, E. J. (2011). The effect of neuroscience education on pain, disability, anxiety, and stress in chronic musculoskeletal pain. Archives of Physical Medicine and Rehabilitation, 92(12), 2041-2056. doi:http://dx.doi.org/10.1016/j.apmr.2011.07.198

Louw, A., Diener, I., Butler, D. S., & Puentedura, E. J. (2013). Preoperative education addressing postoperative pain in total joint arthroplasty: Review of content and educational delivery methods. Physiotherapy Theory and Practice, 29(3), 175-194.

Louw, A., Puentedura, E. L., & Mintken, P. (2012). Use of an abbreviated neuroscience education approach in the treatment of chronic low back pain: A case report. Physiotherapy Theory and Practice, 28(1), 50-62.

Moseley, G., Nicholas, M. K., & Hodges, P. W. (2004). A randomized controlled trial of intensive neurophysiology education in chronic low back pain. The Clinical Journal of Pain, 20(5), 324-330. doi:http://dx.doi.org/10.1097/00002508-200409000-00007

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.

Live Plan Be


There are times in my work when I feel like I’m banging my head against a brick wall. Even though I’ve been saying most of what I write about on here since forever, it seems to take SUCH a long time for anything much to change! BUT then along comes something totally cool to brush my frustration away, and today I want to talk about Live Plan Be developed by Pain BC in Vancouver, Canada.

A couple of years ago I was given the privilege of being asked to prepare a document analysing the content and approach of self management programmes. I reviewed the Cochrane systematic reviews which all supported a multidisciplinary self management approach as the foundation for chronic pain management. I then turned to the qualitative research to investigate what it’s like to be part of a programme from the participant’s perspective. I found that people attending these programmes enter a journey of self-discovery, that some of the skills don’t seem to make sense at first – but do when the person returns to their own setting. I also found that people living with chronic pain relish the opportunity to feel that their pain is acknowledged, that others on the programmes know what it’s like to live with chronic pain so they don’t have to spend ages trying to explain themselves, and to have the chance to be with others who ‘get it’ means breaking out of the isolation that chronic pain can bring.

I also took a look at the ways these programmes can be delivered. While many programmes are face-to-face, with technology making online programmes increasingly more responsive and flexible, I wanted to see whether there were major differences in the outcomes of each programme. Although it’s difficult to tell because the populations using both approaches are not exactly the same, from what I could find, the outcomes were comparable. This is really exciting because it means more people can get access to approaches that have solid research underpinning them without having to travel to and from, and without the staffing needed for face-to-face programmes.

As a result of my report, I suggested that Pain BC might like to investigate developing a whole new programme for helping people live well with chronic pain, and to make this an online programme with some of the features that the research into online behaviour change programmes has identified as useful. Things like having a discussion forum so participants can connect and share their experiences of the reality of living with chronic pain. Having action prompts so that people don’t just read something – but also get prompted to DO something with that information – and most importantly, have this tied to where the person is currently at in their journey towards making changes to live with their pain. I recommended having some self-assessments so people can track their progress, and a place where they could record the things that worked, and those that didn’t work, so it’s easy to share with other people including health professionals.

I’m SO excited to see how Live Plan Be has come together – and it’s now LIVE!

The team that has put this together has done an amazing job, exceeding my wildest dreams of what the programme might look like. It’s sophisticated, easy to use, has lovely graphics and video recordings of real people doing real things, has SO MUCH information on it – and it’s free! If you have chronic pain, or you work with people living with chronic pain, I would love you to take a look at it, and try it out. Then let me know what you think. Whatever feedback you give, you’ll know that the team will work hard to keep on making it better and more useful, so please let them know.

Meantime, I’m hoping that this will bring some hope to people who have struggled with chronic pain, and would like to learn to live well.

Your brain has no delete button


Yesterday, nearly five years after the devastating earthquakes in Christchurch, New Zealand, we had another rude reminder that we live on an active fault zone. A 5.7 magnitude earthquake hit just after lunch, throwing me to the ground, breaking our pendant lights, and a bottle toppled off the shelf beside the toilet, falling into the toilet and smashing the rim (lesson to the men in the house: do not leave the toilet seat up!). Needless to say, my heart was racing for a wee while afterwards!

People living in our fair city have had thousands of quakes to deal with over the past five years, most of them not as powerful as yesterday’s one, but nevertheless rather unsettling. In reflecting on the experience I’m reminded that our nervous system is wired more towards learning and reacting to immediate threat – and anything that represents a threat – than it is to calming and soothing the beast within. In fact, there’s good evidence to suggest that we don’t ever “unlearn” a learned response, instead we develop new pathways that can become stronger and more heavily myelinated than the learned paths – but given a similar context we’re as likely as not to activate that same old set of neural impulses and some researchers suggest this is because of epigenetic changes. (Take a look at this study in rats for one reason – it seems contextual memory triggered by cues is more powerful than we thought!)

As I mused on my startle response which is as well-developed as ever (though I jump less often at trucks going past than I did in the months just after the big quake), I thought about our experience of low back pain – or indeed any other chronic pain. While we’ve got very excited about neuroplasticity, and I think we should, I also think we need to temper our enthusiasm with some reality checks. Even though we seem to be able to reduce pain by using neuroplasticity within our treatments (see Pelletier, Higgins and Bourbonnais, 2015, among others), we need to remember that the pathways associated with chronic pain are many – and not just those to and from the sore part! In fact, because we’re fantastic learning creatures, there are many, many ways in which we encode an experience.

We have already seen that seeing a painful limb can increase the experience of pain in people with CRPS and vice versa (Sumitani, Shibita, Iwakura, Matsuda, Sakaue, Inoue et al, 2007), and this phenomenon has been used in mirror therapy and virtual reality treatments for people with CRPS and some other forms of pain (Foell, Bekrater-Bodmann, Diers & Flor, 2014). As a result of this fascinating finding, treatments using laterality, graded motor imagery and novel movements have all become very popular with varying degrees of effectiveness (especially outside the clinic!).

What perhaps we’ve forgotten is that because we’re incredibly good at learning, we’ve associated not just the “internal” location/intensity/quality of that experience, but also a whole bunch of other associations – words (pain, ouch, suffer, back, leg, doing, lifting, crumbling, disc – and others!), movements (sitting, walking, turning, twisting, crouching, climbing), emotions (happy, sad, glad, awestruck, helpless), images (of a back, leg, someone else sitting or walking or moving), locations (treatment facilities, workplace, the garage, making the bed, the pill bottles in the bathroom) – the list goes on! Even the smell of liniment or whatever rubbing lotion was used can bring all those associations back into consciousness.

And each association branches off and associates with other things in a never-ending network of related experiences and memories and relationships. Is it any wonder that some people don’t miraculously “get better” when we decide to “educate” someone about their pain? Especially if we haven’t given them the respect of listening to how they’ve made sense of their situation…

Now in the series of earthquakes from 2011 until now, I haven’t ever really become overwhelmed with anxiety and helplessness. Yes I have been fed up, frustrated, saddened, and I’ve grieved, got angry at bureaucracy and thought that things surely could be done more quickly. Until yesterday, when the growing anxiety (because the houses being built close to us mean there are many hundreds of thumps and thuds as foundations are hammered into the ground far deeper than ever before) I’d been feeling over the past month or so really got triggered by a very real and unexpected event.

Intellectually I know this quake is just another in the same series as we’ve been having. Nothing terribly awful happened. No-one got hurt. BUT my jitters are back – and every time I look at cracks in the ring foundation, the smashed toilet, look at my broken vase, or go to use the Pyrex jug that got smashed, I’m reminded that this event has happened – and could again. Pictures of the cliffs falling at Sumner, clouds of dust rising from them as they tumbled into the sea; images of broken crockery at Briscoes and wine and beer at the local supermarket; the news, and friends talking on Facebook – all of these remind me of what we’ve just been through and have been for so long.

Now picture the person you’re about to see today. That person with the painful back. The person who flicks through the magazines in your waiting room and sees adverts for lotions, analgesia. Who smells the scents in your area. The one who finds it so hard to roll over in bed every night. Or to sit and watch TV. Just remember that you may be able to develop new and novel pathways for moving so that the pain itself isn’t triggered by movements – but all these other associations are still there, and will be from now on. And think beyond the clinic door and into your patient’s daily life. How will you help them transfer the feeling of safety that being with YOU evokes into a feeling of safety everywhere they are? This is why developing effective self management skills, especially becoming nonjudgemental despite experiencing pain is so very, very important.

 

Foell, J., Bekrater-Bodmann, R., Diers, M., & Flor, H. (2014). Mirror therapy for phantom limb pain: Brain changes and the role of body representation. European Journal of Pain, 18(5), 729-739. doi:10.1002/j.1532-2149.2013.00433.x

Pelletier, R., Higgins, J., & Bourbonnais, D. (2015). Addressing neuroplastic changes in distributed areas of the nervous system associated with chronic musculoskeletal disorders. Physical Therapy, 95(11), 1582-1591.

Sumitani, M., Shibata, M., Iwakura, T., Matsuda, Y., Sakaue, G., Inoue, T., . . . Miyauchi, S. (2007). Pathologic pain distorts visuospatial perception. Neurology, 68(2), 152-154.

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.

Five critical skills for pain clinicians


I could be wrong: it might be seven or ten, but five is a good start. What do people working with those who have pain really need to know/do? What makes them effective? What keeps them positive in the face of what can be an extraordinarily demanding work?

  1. Effective listening skills, along with the ability to communicate that you’re listening. One of the most common complaints about health professionals made by people living with pain is that they don’t listen (Allegretti, Borkan, Reis & Griffiths, 2010; Stenberg, Fjellman-Wiklund & ahlgren, 2012).  While I’m sure there are some clinicians who deliberately protect themselves from engaging in a patient’s distress, I think there’s probably a more insidious version of this – some research shows that when patients report pain, physicians spend more time on technical tasks and less time helping the person actively participate in their own care (Bertakis, Azari & Callahan, 2003).  There’s also some research showing that when clinicians are trained in specific techniques for expressing empathy, patients believe they are more caring (Bonvicini, Perlin, Bylund, Carroll, Rouse & Goldstein, 2009). Physicians were trained to use “The 4 E’s” (engage, empathise, educate and enlist), with a particular focus on communicating that they had heard what was said. Techniques included rephrasing what a patient said; asking a question to elicit more detail; acknowledging or confirming that the person’s emotions are valid/legitimate; and expressing that he or she had experienced a similar feeling. Maybe it’s time for greater training in these skills for all clinicians working with those who have pain.
  2. Mindfulness skills to help deal with emotions during sessions. I hope I’m not just jumping on the mindfulness bandwagon, but I do think being able to be fully present but not caught up in judging or evaluating your own feelings is a critical skill to maintain openness in a clinical situation. A definition of mindfulness that I quite like is “a process of regulating attention in order to bring a quality of non-elaborative awareness to current experience and a quality of relating to one’s experience within an orientation of curiousity, experiential openness, and acceptance” (Bishop, Lau, Shapiro et al, 2004). Being mindful and open allows you to be there for your patient while also making space for yourself. There’s good evidence that mindfulness improves psychological health (Keng, Smoski, & Robins, 2011), and some studies also show that it improves your own communication skills and improves patient satisfaction (Beach, Roter, Kortuis, Epstein et al, 2013).
  3. Case formulation skills. These skills are about pulling your assessment information together in a coherent way so you can generate some testable hypotheses to explain why your patient is presenting in the way they are at this time. To me it’s a waste to conduct assessments and then fail to use that information when you’re developing your treatment plan. And it’s even more of a shame to fail to share that information with your patient. The thing is, there’s often little training given to how to generate a case formulation: it’s got to be based on broad theoretical knowledge fleshed out with the specific information you’ve gathered from your patient. This makes a formulation a unique ideographic set of hypotheses about your patient. I’ve written about case formulations here and here and here.
  4. Superb research reading skills. I don’t think it’s enough to say you’re evidence-based if you’re only using clinical guidelines. I think clinicians need to be critical readers of both qualitative and quantitative research. And I think it’s a crying shame that so much research is hidden behind paywalls. That’s one reason I write so often – I can access research and make it accessible. Of course I’d prefer it if everyone took to reading research, but the cost of doing so is atrocious! And we know that getting into print isn’t always easy, and with the current funding models in tertiary education institutes I think the range and depth of research being published is likely to stay a bit skinny. And until research is widely available for free (remember, authors write for free, reviewers review for free, and much research is published electronically, so where’s the money being spent?) I think it’s going to be tough for clinicians working in private practice. Having said that, even when I was a private practitioner, I always had a subscription to the local medical library – it’s a valid deductible expense.
  5. Effective social media skills. Really? Social media? isn’t that just for people who want to share their food pix? Uh, no. I’ve had the best CPD experiences via Twitter, Facebook, and blogging. Some of the most challenging and thought-provoking discussions occur every day on Twitter. Links to new and emerging research. Links to opinions that make you think. Apps that help you be there for your patients, even when you’re not. Ways to remain in touch with people working in your field from around the world. Is it really a healthcare skill? I think so. Social media allows me to connect directly with researchers, other educators, clinicians, people working in niche fields, people living with chronic pain (the very people I so want to know about). Social media gives people living with pain a voice that can be heard. It allows my niche field to be visible. It has an impact on the general public. If we want chronic pain to be taken seriously by policy developers, and if we want to influence how people living with chronic pain can be heard, then social media is, I think, the way forward. It’s not just me – here’s paper reviewing and with tutorials of applications in medicine and healthcare (Grajales, Sheps, Ho, Novak-Lauscher & Eysenbach, 2014).

This list isn’t exhaustive: what else do you see as critical skills for clinicians working with people who experience pain? Add your thoughts to the list below!

Allegretti, Andrew, Borkan, Jeffrey, Reis, Shmuel, & Griffiths, Frances. (2010). Paired interviews of shared experiences around chronic low back pain: Classic mismatch between patients and their doctors. Family Practice, 27(6), 676-683. doi: http://dx.doi.org/10.1093/fampra/cmq063

Beach, Mary Catherine, Roter, Debra, Korthuis, P. Todd, Epstein, Ronald M., Sharp, Victoria, Ratanawongsa, Neda, . . . Saha, Somnath. (2013). A Multicenter Study of Physician Mindfulness and Health Care Quality. The Annals of Family Medicine, 11(5), 421-428. doi: 10.1370/afm.1507

Bertakis, K, Azari, R, & Callahan, E. (2003). Patient Pain: Its Influence on Primary Care Physician-Patient Interaction. Family Medicine Journal, 35(2), 119-123.

Bishop, Scott R., Lau, Mark, Shapiro, Shauna, Carlson, Linda, Anderson, Nicole D., Carmody, James, . . . Devins, Gerald. (2004). Mindfulness: A proposed operational definition. Clinical Psychology: Science and Practice, 11(3), 230-241. doi: dx.doi.org/10.1093/clipsy.bph077

Bonvicini, K.A., Perlin, M.J., Bylund, C.L., Carroll, G., Rouse, R.A., & Goldstein, M.G. (2009). Impact of communication training on physician expression of empathy in patient encounters. Patient Education and Counseling, 75(1), 3-10. doi: dx.doi.org/10.1016/j.pec.2008.09.007

Grajales, Francisco Jose, III, Sheps, Samuel, Ho, Kendall, Novak-Lauscher, Helen, & Eysenbach, Gunther. (2014). Social media: A review and tutorial of applications in medicine and health care. Journal of Medical Internet Research, 16(2), 452-474.

Keng, Shian-Ling, Smoski, Moria J., & Robins, Clive J. (2011). Effects of mindfulness on psychological health: A review of empirical studies. Clinical Psychology Review, 31(6), 1041-1056.

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

Things don’t always go smoothly


You know, making changes in life is never one of those beautiful uprising graphs like this:

progress It’s far more likely to be like this:

Untitled-1

There are days when life looks fantastic, then you hit a flat spot and it all goes pear-shaped.

While overall you’re definitely making progress, it doesn’t always feel like that especially during a set-back. And this is normal and predictable – but we nearly always fail to plan for it, so the set-back can pounce like a Tigger.

The thing is, though, that as clinicians we can forget this when we’re working with people living with pain. We’re so keen to see people make positive changes that we can forget just how hard it can be when change needs to happen right throughout the daily habits and lifestyle of the person. And so when someone begins to slow down in their pace of change, perhaps even fall back a bit, we can be somewhat unhelpful.

If set-backs are a normal part of making progress, why don’t we help people prepare for it? Forewarned is forearmed, or so they say (not sure who “they” is, but “they” are wise).

Preparing for set-backs

What constitutes a set-back? Different things for different people, I think. So for me, a set-back is a time when changes you’ve recently instituted get harder to do. The reasons changes might get harder could be because of a pain flare-up, or having less pain than usual. They could happen when life gets especially busy. Or the weather has turned colder (or hotter). Or because it’s holidays, or family members are unwell, or a new puppy gets added to the family. Set-backs can happen when anything disrupts the routine, and when the high of deciding to make a change begins to ebb.

Although set-backs are common, they don’t have to put people off their stride, but they DO need some planning. And it’s important NOT to use pain intensity as the guide to whether a person has handled a set-back well – remember that pain intensity can and does fluctuate for many, many reasons, and it’s not the pain that we’re as concerned about as the ability to handle it without losing track of making changes. Painful flare-ups can be a trigger for a set-back, but so can times when pain settles! In fact, in my experience it’s those times when things are going well, pain is settled and all seems to be ticking along when BAM! people forget to use the skills they’ve been developing and begin to head back down to the familiar but unhelpful ways of coping.

I think it’s really helpful to list all the various things that can get in the way of carrying on with changes.

Then it’s useful to list some ways to get around those factors – for example, if I know that cold weather is going to make it hard for me to get out of bed to go dancing first thing in the morning, I know I can programme the air conditioning so that the room is warm, I can lay my dance clothes out the night before (or practice in my PJ’s!), I can make sure my bedroom is warm in the morning, and I can set an alarm 5 minutes before my practice time to remind me. I can also have the music all ready to go in my player, and I’ve planned what I’m going to practice – in this way I’ve managed to work around the obstacles I know I will encounter. And I add to this by setting a ridiculously low amount that is my bottom line – five minutes! – and then I reward myself by eyeing myself in the mirror after my practice and saying “You’re a dancer!” And yes, I got this off the wonderful Nadira Jamal, Bellydance teacher extraordinaire.

setback planningWhen people do have a set-back, it’s still not too late to do something positive about it. In fact, I think there are two things to do.

1. Go through the factors leading up to the set-back. Identify all the opportunities where different choices could have been made. It’s the “seemingly innocent decisions” that gradually lead towards slipping up that really erode change.

So it might be that it’s been a really busy week, so I’ve thought that it’s OK to do half my exercises during the week, and because it’s been great to see a good friend, I’ve gone out with her rather than do my relaxation. And when I’ve been with the friend, we’ve gone to the pub and I had a drink or two. I’ve decided to get up and dance for a while. I’ve been enjoying myself and haven’t noticed the time. I have another drink and carry on dancing. My friend and I head home about midnight and I’ve got a busy day ahead tomorrow – ooops! I’m so sore I can’t move!

Does that sound familiar?

Where could I have made different choices? Sometimes it’s about avoiding a negative emotion, or about being in a positive mood and being carried away. Sometimes it’s because I might have been feeling a bit flat and down and so I’ve decided it’s OK not to do something – and ended up having to do things at the last minute. Whatever it is, it’s worthwhile taking some time to work back to the earliest point at which I could have made a different decision, and avoided wandering down the path of least resistance.

2. Use a “Can Cope” plan for dealing with the fallout once it’s happened. This is a short set of actions that are already written down before the inevitable happens, so people don’t have to do the thinking when they’re feeling least like it. I always start with “Stop. Breathe out. Breathe in. Breathe out. Breathe in. Say something nice to yourself”

The subsequent steps are designed to move from immediate and short-term actions to avoid a complete cr@p out – like doing a stretch or two, going to have a drink of water, taking a few minutes out to say something calming, maybe changing the task to something different for a few minutes, going to talk to someone (or phone them), maybe even taking lunch early. Longer term actions might include taking some medication (as a last resort), changing position, having the names of a few people to get support from, doing a relaxation, and so on.

The “Can Cope” plan can be written down on a small card about the size of a business card (they used to be called visiting cards). Then it can be kept in the wallet and pulled out when needed.

The thing with all of these approaches is that they need to be done BEFORE they’re needed. It’s incredibly hard to think straight when life has gone pear-shaped, so do the thinking before it happens. Make every action very specific – if the person is going to phone someone, list their name and phone number on the form. If they’re going to do some stretches, write them down. If it’s a coping statement, write it down!

And therapists, remember to let the person you’re working with come up with their own plans for how they might get around these things. Remember, people have incredible resourcefulness if WE just get out of the way and stop rescuing before it’s needed. I think the best way is to let the person know you have confidence in their ability to get through. Don’t step in to rescue – it doesn’t teach anyone anything, and it shows that really you don’t think the person is capable of managing by themselves. Unless you want to see a person and be their therapist forever, stand back and let it happen – then work with the person to analyse what went wrong and what they could do differently. Every set-back is a chance to learn!