Health

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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.

 

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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.

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Flexibility: not just movement variability


For many therapists, learning the Right Way to treat a person experiencing pain means following rules. Observe this, identify that, follow the yellow brick road and end up with the right result. The problem is that people don’t always respond in the way the rules suggest meaning both clinician and patient can be confused about what to do next. While it’s normal to generate clinical heuristics, or rules of thumb, these can limit the way we approach helping someone.

I’ve been pondering this as I’m reading Villatte, Viullatte and Hayes Mastering the clinical conversation: Language as intervention. I posted last time I wrote about the problems that language can pose for us as we attend to the concepts and relationships those word generate for us rather than noticing what is actually happening right here and now. I was originally thinking of the people we work with and treat, but now I want to turn my attention to us – because we too can be imprisoned within rules that function well in one context – but hamper flexible responses in other contexts.

The rules we follow

Some of the rules we learn during our initial clinical training can be very helpful – for example, we learn that we need to attend to what people say and do; we learn to suppress our judgements about the person as “likeable” or “unlikable” (hopefully); we learn the importance of using correct terminology with one another. Other rules are far less helpful: in my case, learning that people “should” use a raised toilet seat after hip replacement (almost irrespective of the bathroom they have, the alternatives they’d already organised, or whether it actually reduced the risk of hip dislocation) meant that I tried to give the things out to people who didn’t actually need them. I quickly stopped doing that after I found too many of those toilet seats dumped on the roadside inorganic rubbish collection! And I became more sensitive to who, what, when and where. And I changed my thoughts once I read the research suggesting those “hip precautions” perhaps don’t hold up to scrutiny (for example: Schmidt-Braekling, Waldstein, Akalin, et al, 2015; Ververeli, Lebby, Tyler & Fouad, 2009).

We follow many other clinical rules – for example, we attend to certain features of a person’s presentation because we’ve been told it’s important. Depending on the model or theory we hold about the problem, we’ll attend to some things and not others.

Similarly in terms of our treatments – we’ve been told that some treatments are “good” and others not so. Some of us follow these rules very strictly – so patients are told to move in certain ways, to avoid certain movements, to do six repetitions of an exercise, to stop for a break every hour – and some of us have even been quite frustrated because the patients we’ve been advising tell us these rules aren’t working. We think “but they should”!

Explaining pain

A good example of this is the push to ensure every person experiencing pain gets an explanation for their pain. We’ve seen the evidence showing it’s a good thing, and we’ve even learned a set of phrases that we’ve been told “work”.

BUT is this a rule we should always follow?

Flexibility

In some instances giving pain education is unhelpful. Times I can think of are when a person is presenting with high pain intensity and in an acute situation – or when they’re stuck with an explanation they prefer and aren’t ready to consider another, or when they have other more important concerns.

Based on what I’ve been reading, perhaps we need to consider some alternative ways of looking at this “rule”.

Here’s the thing: for some people, at the right time, and when the person is being helped to discover for themselves, learning about pain neurobiology is a really good thing. But if we apply this as a rule, we risk becoming insensitive to other things the person might need AND to whether the education has had the intended effect. For some people, it’s not the right thing – the outcome for THAT person might be seen in increased resistance to your therapeutic approach, or arguing back, or them simply not returning because we “didn’t listen” or “told me it’s all in my head”. For others, this information might be useful but not as important as identifying that they’re really worried about their financial situation, or their family relationships, or their mood is getting them down, or they’re not sleeping…

Am I suggesting not to do pain education? Not at all. I’m suggesting that instead of developing a rule that “everyone must have pain education because it’s good” (or, for that matter, any other “must”), clinicians could try considering the context. Ask “is this important to the client right now?”, “what effect am I hoping for and am I measuring it?”, “how can I guide the person to draw their own conclusions instead of telling them?”

In other words, attending to those contextual cues might just help us think of a bunch of alternative ways to help this person achieve their goals. And if we then ask the person to collaborate on HOW to reach those goals, suggesting the plans are experiments that both of you can evaluate. This helps reduce our human tendency to latch onto an idea, and then create a rule that isn’t always helpful.

 

Schmidt-Braekling, T., Waldstein, W., Akalin, E. et al. Arch Orthop Trauma Surg (2015) 135: 271. doi:10.1007/s00402-014-2146-x

Ververeli P, Lebby E, Tyler C, Fouad C. Evaluation of Reducing Postoperative Hip Precautions in Total Hip Replacement: A Randomized Prospective Study. ORTHOPEDICS. 1; 32: doi: 10.3928/01477447-20091020-09 [link]

Villatte, M., Viullatte, J., & Hayes, S. (2016). Mastering the clinical conversation: Language as intervention. The Guilford Press: New York. ISBN: 9781462523061

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Being flexible – and how language can make you inflexible


One of the reasons humans seem to dominate our natural world is our flexibility. We don’t have the best eyesight, hearing, strength, speed, stamina or indeed any single attribute that means we’re King (or Queen) of the Jungle, but what we do have is the ability to adapt our environment to maximise the benefits to ourselves. Being flexible means we can find many different ways to achieve a certain goal. It means we don’t get stuck using the same solution when that solution doesn’t work. We try lots of different ways to achieve what we want.

Or are we?

There are plenty of times when I’ve had to firmly remind myself “the definition of insanity is to try doing the same thing again and again, hoping for a different result” I have no idea where that quote came from, but it seems applicable!

Rules

Thankfully, humans don’t have to experience adverse events directly to learn from them. We can learn from what other people tell us. Sometimes what others tell us is helpful – “watch out, walking on a sprain is gonna hurt!” Other times, when what someone tells us is true – but not applicable in our context – we can learn something that isn’t helpful. “Watch out, walking on anything painful is bad”. We can over-generalise or develop an arbitrary rule that is inflexible.

Now this happens all the time. We learn to avoid things that could potentially harm us on the basis of words – parents, teachers, friends, officials all tell us not to do things that could harm us so we avoid dangers without actually having to face them. When we learn this, the function or relationship between events and the way we relate to them gets influenced by what we’re told rather than the actual event itself. So, for example, we learn that when someone tells us off for doing something dumb, we re-experience what it feels like to be ashamed. We don’t want to experience shame, so we avoid situations that look like (function in the same way as) whatever it was we might have done to be told off.

Experiential avoidance and symbolic generalisations

Because we use language to depict these situations and because language can bring back all those associations between the event, object, emotions and experiences, we quickly learn to generalise these relationships – in RFT (relational frame theory) terms, we develop symbolic generalisations. What this means is that even though the actual object, event, emotion etc is not present, just describing something like those things can elicit the same response. And when we don’t like that experience we use every means possible to avoid experiencing it – so we avoid, try to forget, try not to think about it, keep busy, avoid talking about it, pretend it’s not there.

Through avoiding, we develop a whole lot of new associations – “doing this to avoid that” begins to relate “this” to whatever we’re avoiding. So, for example, keeping busy to avoid feeling sad can become a trigger for sad feelings. Sitting stiffly and avoiding bending can become a trigger for worrying about the potential for pain if we do bend.  So, doing things that help us avoid a  negative association can build into a whole set of behaviours that initially help us avoid but ultimately elicit the very things we were hoping not to experience. We become inflexible as the rules we use develop into constraints across a larger range of stimuli/experiences than we originally intended.

Deliberately trying to avoid an experience is tricky, there can be a whole lot of unintended consequences – and no more so than when the negative experience we’re trying to avoid is pain.

Rule-governed behaviour

The thing is, once we develop a rule we begin to follow the rules rather than trying it out ourselves. We place less emphasis on our own experience. Let’s use an example from pain. A person feels uncomfortable bending over while carrying a laundry basket. A kind therapist suggests that bending over isn’t safe, so the person should use “safe handling” techniques. While the therapist is present, the person uses the so-called safe techniques but all the while thinks “if I bend over incorrectly, it must be unsafe because these are “safe handling” techniques”. The person develops a rule. Now when the person begins to move something she uses the “safe handling” techniques but finds it really difficult at times because she has to lift children into the back of the car so they can get into the car seat. She feels worried that she’s not using the “safe handling” techniques rather than feeling what actually happens when she lifts the child.  She instead avoids lifting the child into the car and asks for help. Another person comes along, scoops the child up, plonks him into the car seat and the job’s done.

Rules are helpful, they save us time and harm. They’ve accelerated our rate of learning. BUT they come at the expense of flexibility. There are times when it’s useful not to use “safe handling” techniques – ever tried crawling under your house with a bag of tools? Or get a screaming toddler into the back seat of a two-door car?

Rules also begin to influence the associations we make between events – before the kind therapist advised the person that she should use “safe handling” techniques, the person never thought about how she got the children into the back seat of the car. Now she does. And every time she lifts something off the ground she also thinks about her back. And when she carries her groceries. And bends over to make the bed. And maybe even as she reaches overhead to get something from a cupboard. Or lifts the ironing board and opens it out.

How stuck is that? And how often have we as clinicians inadvertently generated rules that teach our clients to avoid a movement or experience?

Next week: pliance and tracking and what these mean…

Villatte, M., Viullatte, J., & Hayes, S. (2016). Mastering the clinical conversation: Language as intervention. The Guilford Press: New York. ISBN: 9781462523061

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Getting stuck with language


In my last post I talked about the ways in which humans learn to relate abstract concepts and experiences together (symbolic relations). I pointed out that we learn to take another person’s point of view as part of developing empathy, and that by interacting with our world we become aware of our place (here) and someone or something else’s place (there). We also learn “me” and “you” (not me), along with near and far, now and then and myriad other abstract concepts that our language can allow us to understand. I suggested that the flexibility of symbolic relations and the relational framing we develop as a result of this skill can be both a help and a hindrance.

Yes, we can remember that a pot can be used to cook, but we also can’t unlearn that relationship. And in being unable to unlearn a relationship we can find it difficult to consider alternative relationships between that pot and whatever else we could do with it. The pot will always be recognised as “something to cook with” although it might also become associated with a receptacle for water, a paperweight, a hat, and even a weapon – but when we’re first asked “what do you use a pot for?” we’ll almost always come up with “cooking”.

In relational frame theory, we develop the ability to empathise or adopt the view of another person based on perspective taking and contextual cues. Contextual cues help us learn the concepts of “I” and “you”  by moving from “here” to “there” to take the place of the other person. If a pen is here, and paper is there, when I go to the paper, it becomes “here” and the pen is “there”. In technical terms this is called deictic framing and this is how kids learn that some concepts only make sense from a given point of view – and here and there are two of those concepts.

How does this relate to pain?

Well, to enjoy being with others, you need to have sufficient deictic framing skills to “stand in another person’s moccasins”, to empathise with their feelings and to be willing to feel those feelings (Villatte, Villatte & Hayes, 2016, p. 32). The thing is, we don’t always want to feel what another person is feeling, especially if we’re angry with them, or they’re feeling sad or some other negative emotional state. We learn to put our ability to empathise on hold to avoid experiencing those feelings. We do this with our own emotions and experiences we’d rather not have. And it’s an adaptive thing – we don’t want to be completely immersed in another person’s experience all the time because it’s difficult to know what our own feelings are vs those of another. We also don’t want to experience all the negative things around us – we learn from them, true, but we don’t really want to feel them all the time. So we develop a skill called “experiential avoidance”. That is, we learn not avoid experiences we’d rather not have.

Experiential avoidance is a cool skill, it’s definitely helpful – it is a process that we use to avoid personal injury, unpleasant people, or situations we don’t feel comfortable in. BUT there’s a catch. Because we relate concepts to one another, we associate words with experiences and memories as well. This is also useful – we can recall the lovely feeling of summer even in the middle of a grey old winter! But at the same time, our most potent learning is often associated with unpleasant experiences, and so for me the sound of a rumbling truck can bring back all the memories of my house being jolted and struck by an earthquake. And because that experience is associated with feeling out of control, helpless, worried and unsettled, those emotions come back along with the memory of the earthquakes. All brought about by hearing a truck rumbling past! And talking about the earthquakes, for some people, is enough to bring back all those same memories.

No wonder, then, for some of the people we work with, just seeing someone walking by is enough to generate the memories, emotions and concerns they experience when they try to walk on a painful foot.

Because of our tendency to avoid experiences that don’t feel good, we naturally try to avoid coming into contact with those stimuli that evoke those negative feelings etc. For some people this can mean avoiding watching images on TV – I remember avoiding watching the tsunami in Japan that happened just after the quakes here in Christchurch. To me the emotions were too raw, I felt too overwhelmed by my own situation to feel I could empathise with those people in Japan.  In some of our clients, just talking about their own painful body can be overwhelming, bringing back unpleasant emotions, memories and thoughts. And indeed for some people, just seeing others doing the things they believe will hurt if they did them is enough to provoke both a negative emotional response AND an flare-up of their pain.

So. Experiential avoidance can help us avoid feeling overwhelmed…but it also stops us experiencing what is happening right now. And I think you can see how it can stop us learning, and it can limit the range of things we’re happy to do – not because there’s any threat right here and now, but because we remember what has happened, and we make predictions of what might happen in the future. The things that might happen – might not happen too! And the things that have happened have already occurred… but our brains are good at joining the dots and being a bit over-protective.

What this means for us as clinicians (and for us as people, too), is that we might need to be gentle but firm, and help people be present here and now. And gradually show people how to be OK with experiencing things that remind us of unpleasant events in the pursuit of something far more useful – flexible responses in a world that is always changing.

Villatte, M., Viullatte, J., & Hayes, S. (2016). Mastering the clinical conversation: Language as intervention. The Guilford Press: New York. ISBN: 9781462523061

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Words are never enough – but does that stop us?


Pain may be said to follow pleasure as its shadow; but the misfortune is that in this particular case, the substance belongs to the shadow, the emptiness to its cause. CHARLES CALEB COLTON, Lacon

I can bear any pain as long as it has meaning. HARUKI MURAKAMI, 1Q84

But pain … seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?  LOIS MCMASTER BUJOLD, Barrayer

Language is not just words, but what those words symbolise. We use movements of lips, tongue and throat to produce symbols we relate to other things. We then use the relationships we learn through symbols to frame or structure our experiences – language is a “form of cooperation that builds on the social nature of humans groups and enhances a culture of eusociality in which humans thrive” (Villatte, Villatte & Hayes, 2016. p. 28). What this means is that humans learn to connect concepts together through language which represents concepts only because of a shared social understanding – and in sharing this understanding we feel connected.

Why am I talking about language? Well, relational frame theory is a theory of human behaviour that helps us understand how language can exert an influence on us through the way we understand symbolic relations.We learn symbolic relationships by interacting with our world – children learn concepts of  “I – you” (that you and I are different, but that I can take your perspective by imagining I was in your place); “here-there” (that here is where I am, but there is another place – and I can move to that place); “now – then” (what is happening now will become then soon) by handling objects, ultimately understanding that the concepts only make sense within the context of “here”, or “I”, or “now”.   To be empathic, we need to learn to take the perspective of another, see and feel things from another person’s point of view, and be willing to experience those feelings (Villatte, Villattee & Hayes, p.32).

To be empathic to another’s pain, we need to take the perspective of another, to be willing to experience “what it might feel like” from the other person’s shoes.

Why are symbolic relations important?

In Christchurch, as many people know, over the past five years we have been through over 10,000 earthquakes of more than 3 on the Richter Scale. The thought of having an earthquake, to someone raised in NZ, is a distinct possibility. We have small ones all the time. Then in September 2010 we had the first big earthquake. It happened in the middle of the night (early morning), when all was dark, and it was violent! Later that day we had many aftershocks, and I can remember my heart pounding and feeling anxious in the aftermath. What has happened since, though, is that I’ve learned to associate the word “earthquake” with a whole lot of concepts – a rumbling noise from a truck driving past, the deep rumble of earthworks, EQC (our national insurer), road cones, detours, heritage buildings being knocked down, having no water or power. I keep a look out for exits, I brace at the rumble of a truck, one of the topics of conversation is “how is your house” and I remember the fatigue of constant aftershocks in the middle of the night.

Learning the associations (symbolic relations) between the experience at the time of an earthquake and all these other things such as words, movements, actions and emotions means that as a person living in Christchurch, the word “earthquake” and the sight of road cones and the rumble of a truck have all gained additional meaning or salience to me.

Simply by remembering a particular day (for us it was September 22, 2011), or by looking at a road cone, or diggers operating in a trench in a road, I have emotional, cognitive, motivational and perceptual responses. This is the power of a symbol, once learned.

And once learned, that association will never be unlearned – I will always remember that trucks rumbling by sound a lot like the start of an earthquake, and I will probably always have a quick little bracing response that I may not even notice (but hitch me up to biofeedback and I’ll be skin conductance will be increased).

What does this have to do with pain?

In the same way that I learned about earthquakes being associated with a whole bunch of things that hadn’t been connected before September 2010, from the time we are born we develop associations between our experiences of pain and other things including language.

For the most part we learn that pain is associated with something not so good happening to our body. We learn that it’s something we don’t really want to experience, and so we try to avoid it (mainly). We learn words that are associated with that experience – “ouch!”, “hurt”, “painful”, “ache”. We also develop emotional, cognitive, motivational and perceptual responses to this experience. We learn that certain movements bring pain on, while others alleviate it; we learn that some people respond with sympathy to our words or movements while others don’t respond.

The thing about symbolic relations is that “the simplest act of remembering by using names and symbols … means that anytime, anywhere, we can remember past painful or difficult events based on a few cues…the past can become present through symbolic relations” (Villatte, Villatte & Hayes, 2016, p. 33). While nonhuman animals can become fearful in situations that are similar to those they’ve felt threatened in, humans can experience the same emotions and responses even when a word is spoken – like earthquake for me brings on a heightened awareness of how vulnerable I am when the ground shakes.

What this learned association means is that for all humans, there are many cues that will elicit the same response as the actual event. And given the ubiquity of pain and the words we use to describe pain – and the associations we develop since we’ve been children – it’s no wonder that changing some of the more unhelpful associations and responses we have to the experience is a challenge.

Over the next few weeks I’ll be posting about relational frame theory and how this theory can help us understand why words can be used to help – and harm – and how to implement useful verbal strategies in sessions to help our clients see their pain from a different frame.

Villatte, M., Viullatte, J., & Hayes, S. (2016). Mastering the clinical conversation: Language as intervention. The Guilford Press: New York. ISBN: 9781462523061

ferny thing

A new definition of pain


The IASP definition of pain has been revolutionary. It has helped shift the focus away from mechanisms involved in producing the experience we all know, towards defining the nature of that experience. The definition is relatively simple, easy to remember and contains several important qualitative definitions that are integral to the experience. For those of you who haven’t attended one of my classes, the definition is:

Pain

An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.

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

It was first proposed in 1979, and has not been substantially changed since then, although the accompanying note has.

Now two prominent pain researchers are proposing a new definition: Pain is a distressing experience associated with actual or potential tissue damage with sensory, emotional, cognitive and social components (C de C Williams & Craig, in press).

Their arguments centre on some important aspects that have influenced our understanding of pain and represent advances in scientific understanding of pain since the first definition. The first definition was ground-breaking but acknowledged only sensory and emotional features of pain: our understanding of pain now recognises the influence of and effect on  cognitive and social components. These aspects are important because in many ways the original definition seems to discourage clinicians to be aware of emotional, sensory AND cognitive and social aspects of pain in ACUTE pain as well as chronic.

They further argue that pain is more than “unpleasant” if it is clinically problematic, and suggest that “distressing” be used to describe the nature of that experience. And it is this aspect that I am less comfortable with – because, as many readers of this blog know, it is possible to experience pain without distress, particularly if that pain is being managed using approaches such as mindfulness and acceptance. To my mind, a definition that equates experiencing pain with distress risks invalidating those who, because of their understanding of pain, or their social context, or even concurrent competing goals, fail to identify their pain as distressing but instead experience it as “negative but irrelevant”, or those who, because of social context and learning, don’t frame their pain as distressing and present as stoic and calm.

Despite this difference in opinion, the rest of the arguments for changing the definition of pain appeal to me. There is the need to acknowledge not only verbal report, but also nonverbal behaviours as part of the way humans express and communicate their experience of pain. Unfortunately, researchers and clinicians can focus on a single dimension: intensity – although thankfully most effective clinicians will incorporate more than one dimension and include assessment of behaviours, voice, facial expression, interference on daily life, quality of pain etc.

C de C Williams and Craig also propose revising the note. The note is often not included when people are discussing the definition of pain – in fact, one prominent clinician I know declared that “Pain is not a psychological phenomenon” – er…. take a look at the last sentence of the note, please Dr K. As a result, there are those who still do not recognise that pain is not just about nociception and nociceptive pathways. This means some unfortunate patients do not have very real and clinically important psychosocial aspects of their experience attended to, despite years of research showing just how critical these factors are!

Their first recommendation is to remove reference to “pain in the absence of tissue damage… are probably psychological” – because as we know now, neuroplasticity provides an explanation for this phenomenon.  Additionally, they note that psychological phenomena exist even in acute pain, such as emotional responses, problematic thinking styles, avoidance, social disruption – and these can all occur with diagnosable tissue pathology. Finally, ruling out prickling, dysaesthesia etc seems to ignore the presence of these as part of many reports of pain.

What would I suggest? I think it’s still useful to use the word “unpleasant”, perhaps it could be relabelled an “aversive” experience, rather than necessarily “distressing” which seems to restrict painful experiences to only those that people identify as distressing – even people who participate in body suspension where the entire bodyweight is carried on hooks inserted into the skin and who experience this as a process in which they may ultimately feel euphoria describe the pain as “aversive” (or, to use their words “It hurts like a bitch”!).  Aversive implies the call to action potential that is present in all pain.

My definition? Pain is an aversive experience associated with actual or potential tissue damage with sensory, emotional, cognitive and social components .

DE C WILLIAMS AC, Craig KD.
Updating the definition of pain. 
Pain. 2016. 
PubMed: www.amedeo.com/p2.php?id=27200490&s=pai&pm=84c33420cb43501
Shebadog

Self-managing chronic pain


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

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

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

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

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

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

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

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

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

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

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

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

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

look what's coming

What should we do about acute low back pain?


There’s no doubt that low back pain presents a major healthcare problem in all parts of the world. It’s probably the most common form of musculoskeletal pain around, it can be highly disabling – and its management is one of the most contentious imaginable. As someone once said “if there was an effective treatment for low back pain, there wouldn’t be such a range of treatments available!”

I want to take a step back and consider people living with nonspecific low back pain only, it’s by far the most prevalent, and while no-one would say there is a single diagnosis that can be applied to all forms of back pain, there seem to be some similarities in how this kind of pain responds.

What we’ve learned over the past year is that acetaminophen hardly touches the pain of nonspecific low back pain Machado, Maher, Ferreira, Pinheiro et al, 2015). This means anti-inflammatory medications (NSAIDs) are the most likely group of medications to be prescribed, or perhaps codeine. Exercise was the recommended treatment for osteoarthritis of the hip and knee, suggesting that this approach might also be recommended for low back pain.

Turning to exercise, it seems that there is no clear indication that any particular type of exercise is any better than any other exercise for low back pain (not even motor control exercise)(Saragiotto, Maher, Yamato Tie, Costa et al, 2016), and all exercise improves pain and disability – and even recurrences (Machado, Bostick & Maher, 2013). What seems important is that people get moving again, and do so quickly after the onset of their back pain.

Graded exposure has also been in the news, latest being a study using graded exposure for elderly people living with chronic low back pain, where it was found to not only improve function (reduce disability) but also found to reduce pain (Leonhardt, Kuss, Becker, Basler et al, in press). OK, pain reduction wasn’t reduced a great deal, but neither have many treatments – and at least this one has few adverse effects and improves disability.

Where am I going with this?

Well, recently I made some apparently radical suggestions: I said that

  1. sub-typing low back pain doesn’t yet seem to be consistent;
  2. that no particular exercise type seems better than anything else;
  3. that ongoing disability is predicted more by psychosocial factors than by physical findings – even when injection treatments are used (van Wijk, Geurts, Lousberg,Wynne, Hammink, et al, 2008).
  4. that people with low back pain seem to get better for a while, and often find their back pain returns or grumbles along without any particular provocation;
  5. and that perhaps treatment should focus LESS on reducing pain (which doesn’t seem to be very effective) and LESS on trying to identify particular types of exercise that will suit particular people and MORE simply on graded return to normal activity.
  6. Along with really good information about what we know about low back pain (which isn’t much in terms of mechanics or anatomy, but quite a lot about what’s harmful and what doesn’t help at all), maybe all we need to do is help people get back to their usual activities.

For my sins I was asked not to remain involved in the group planning health system pathways (I also suggested maybe osteopaths, chiropractors, massage therapists and both occupational therapists and psychologists might also be good to be involved – maybe that was the radical part because I can’t see an awful lot radical about my other suggestions!).

Here’s my suggestion – when one of the most difficult aspects of low back pain management is helping people return to normal activities within their own environment (work, home, leisure), why not call in the experts in this area? I’m talking about YOU, occupational therapists! So far I haven’t been able to find a randomised controlled trial of occupational therapy graded exposure for low back pain. I’m sorry about this – it’s possibly a reflection of the difficulty there is in even suggesting that DOING NOTHING (ie not attempting to change the tissues, just helping people return to normal activity) might be an active form of treatment, and one that could work.

I don’t want to denigrate the wonderful work many clinicians do in the field of low back pain, but I suspect much of what seems to work is “meaning response” – well-meaning clinicians who believe in their treatments, patients who believe in their therapists, treatments that appear plausible within the general zeitgeist of “why we have low back pain”, all leading to a ritual in which people feel helped and begin to do things again.

Many of us have read Ben Darlow’s paper on The Enduring Impact of What Clinicians Say to People with Low Back Pain (Darlow, Dowell, Baxter, Mathieson, Perry & Dean, 2013). We have yet to count the cost of well-meaning clinicians feeding misinformed and unhelpful beliefs (and behaviours) to people with acute low back pain. I think the cost will be extremely high.

I just wonder if we might not be able to cut out much of the palaver about low back pain if we went directly to the “feeling helped and begin to do things again” without the misinformation and cost of the rituals involved. While other clinicians can contribute – the process of doing in the context of daily life is where occupational therapy research, experience and models have focused for the discipline’s history. That’s the professional magic of occupational therapy.

 

Darlow, B., Dowell, A., Baxter, G. D., Mathieson, F., Perry, M., & Dean, S. (2013). The enduring impact of what clinicians say to people with low back pain. Annals of Family Medicine, 11(6), 527-534. doi:10.1370/afm.1518

Leonhardt C, Kuss K, Becker A, Basler HD, de Jong J, Flatau B, Laekeman M, Mattenklodt P, Schuler M, Vlaeyen J, Quint S.(in press). Graded Exposure for Chronic Low Back Pain in Older Adults: A Pilot Study. Journal of Geriatric Physical Therapy.

Macedo, L. G., Bostick, G. P., & Maher, C. G. (2013). Exercise for prevention of recurrences of nonspecific low back pain. Physical Therapy, 93(12), 1587-1591.

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

Saragiotto Bruno, T., Maher Christopher, G., Yamato Tiê, P., Costa Leonardo, O. P., Menezes Costa Luciola, C., Ostelo Raymond, W. J. G., & Macedo Luciana, G. (2016). Motor control exercise for chronic non-specific low-back pain. Cochrane Database of Systematic Reviews, (1). http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD012004/abstract doi:10.1002/14651858.CD012004

van Wijk, R. M. A. W., Geurts, J. W. M., Lousberg, R., Wynne, H. J., Hammink, E., Knape, J. T. A., & Groen, G. J. (2008). Psychological predictors of substantial pain reduction after minimally invasive radiofrequency and injection treatments for chronic low back pain. Pain Medicine, 9(2), 212-221.

P1000573

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.