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.

 

Making sense of pain

Humans have an incredible desire for things to make sense. We want things to fit a story or what’s expected – and we get right discombobulated (it’s a word) if we encounter a situation where things don’t make sense. To a certain extent we can blame our use of language for this, because it’s the way we’ve learned to pair words with concepts, and to associate multiple concepts together. For example, we learn “ouch” is associated with that unpleasant sensory and emotional experience that we’ve learned goes along with scrapes or bumps or cuts. We’ve also learned that “ouch” goes along with “it will go soon” and “don’t use that bit too much or it will hurt for longer” as well as “big boys don’t cry” and “you’re just being lazy if you don’t suck it up” and “whiners talk about their back pain all the time” and other similar notions. This is how humans connect visible objects (nouns) with words and other invisible concepts to create a network of meaning that, among others who share similar language and culture, means we can communicate with one another and go beyond the here and now and into the future and recall the past.

Even when events don’t make sense, we struggle to create a sense from it – we even say things like “this doesn’t make sense” as a way to classify the event along with a bunch of other “events that don’t make sense”. 

Why does this matter?

Well, because we want life to make sense, and to understand what we and others are up to, we create meaning and sense (coherence) even where there is no sense. Sometimes we grasp at straws (otherwise known as explanations from people who may not actually know what’s going on, but can spin a good tale). And at times, grasping at these straws means we ignore our own experience just so we can  hold on to what we think ought to be there. Here’s an example: some of us have back pain. We don’t know why it started, but we try to make sense of why we experience it by drawing on things we’ve been told by others – we might blame age, lifting “incorrectly”, weak “core” muscles, or differences in how long our legs are. Now the explanation itself doesn’t need to even be accurate – what’s important is that by accepting an explanation we become less sensitive to alternative explanations, and even more importantly, we begin to ignore what our own body feels like because we think we should believe what an expert tells us.

The problem with trying to make an explanation work for us, when it’s not necessarily so, is that in adopting that explanation we may find it a lot more difficult to respond flexibly to different situations. For example, if we’ve learned that back pain happens because of poor posture (where “poor posture” means not holding the spine a certain way), then we have more difficulty doing things when we’re in situations where being hunched over is the only way to get into an awkward situation, like when we have to lift a child into the back seat of a car, or put the pots back into the back of the bottom shelf of the cupboard.

Explanations for pain

Because pain is so common, and critical for human survival, we hold deep and powerful beliefs about what pain should mean, and how we should handle it. We probably all learned that pain is temporary and generally settles down once tissues have healed. We might have learned to hide our tears and not to ask for help when we’re sore. We probably grew up knowing that if tissues are really mangled, then it really hurts, and if it’s a paper cut it shouldn’t bother us. And we learned all the myriad concepts associated with pain – like being too withdrawn or tearful means we’re not really very brave, that if we get angry and hit out at someone who’s helping us with our pain, it’s very bad. We learned that it doesn’t hurt as much when someone “kisses it better”, and we learned that we should find out what’s wrong, get it fixed, and get over it.

But what happens when pain violates our past experience and all the explanations we’ve been given before?

What if we have pain that doesn’t disappear? What if the explanations we get given don’t fit with our own experience? What if the very things we’ve been told to do to “help” our pain actually make our lives worse? What if we’re clinicians who find that all the things we’ve been told should work – just don’t.

If we’ve been good learners, most of us will be unsettled by these inconsistencies. Things don’t add up. We probably keep on looking for “the answer” that will fix the problem. We’ll probably feel guilty and perhaps even a bit embarrassed that this pain is different. We might doubt our own experience and worry that we’re being just a bit pathetic or a really don’t want to get better. Or if we’re clinicians, we may wonder if the person wants to get better, or if they’re really doing the exercises the way they should…

And this isn’t helped by well-meaning people who might suggest that we should keep on looking for “the answer” – even when doing this gets in the way of important things we want to be able to do! So we might take the pills that make us feel groggy and constipated. We keep on doing the exercises that are boring and don’t seem to change anything. We do these things not because they work – but because we think they should work. And so we all get frustrated and irritated and just don’t live lives of richness and fulfillment. Perhaps we forget what we want our lives to stand for anyway.

Difficult conversations

It isn’t easy to talk about pain that doesn’t do what it ought to. Our very human nature makes the situation difficult. I’m hoping that by beginning to think more contextually, more about what works in the here and now, about having a range of options to try so we don’t get backed into an unworkable corner just because that’s what someone has suggested should work, that we the people (those living with chronic pain and those working with those who live with chronic pain) might gently and creatively develop some flexibility around what can be such a sticky  concept. Maybe that’s what resilience is?

 

Guide, don’t instruct: how we talk within sessions

Do you remember your favourite teacher in school? Mine was Mrs Jackson, teacher of my Form 2 class (I think I was 12 years old). She was an outstanding teacher because she expected that we’d do well. She also didn’t tell us what to do – she helped us explore. And if there was one thing I’d like to have happen in therapy sessions with clients, it would be that we learn how to guide instead of instructing.

It’s only recently that I’ve learned why guiding and facilitating is so much more helpful than telling or instructing, and yes it’s because I’ve been reading Villatte, Villatte & Hayes Mastering the Clinical Conversation.

Have you ever noticed that when we give an instruction like “Sit up straight” or “Use your core” our clients attend to how well they’re doing just that – sitting up straight, or using the core – and at the very same time, they no longer attend to other aspects of their movement (or the context, or even the purpose of the movement). It’s a human tendency to focus on a particular set of features of our environment – and it certainly helps us cognitively because it means we don’t have to attend to everything all at once. BUT at the same time, it means we become relatively insensitive to other features occurring at the same time.

Rules or instructions have their place, or they wouldn’t still be being used in therapy – but their utility depends on how rigidly they’re applied. It makes sense for a super athlete to really focus on certain aspects of their performance, especially when they’re training, and especially when there’s one particular set of movements that will maximise their performance. For people living with pain, however, life is not about a set of performance goals. Instead, it’s about being able to respond adeptly to the constantly changing demands of their lives. And one thing people living with pain often have trouble with is being able to notice what’s happening in their own bodies.

Let’s unpack this. People living with chronic pain live with ongoing pain in certain parts of the body – and human tendencies being what they are, we try to avoid experiencing those sore bits, so our attention either skips over the painful area or it focuses almost exclusively on the sore bits and not on other parts (technically this could be called experiential avoidance). By working hard to avoid experiencing the sore bits, or alternatively focusing entirely on those sore bits, people living with pain often fail to notice what actually happens during movement.

As therapists, we can complicate this. We can instruct people (give them rules) about the movements they “should” be doing. We try to ‘correct’ posture. We advise people to use specific lifting techniques. We say “use your core”.

The effect of these instructions is to further lead our patients away from experiencing what is happening in their body. Instead of becoming aware of the way their bodies move, they attend to how well they’re following our instructions. Which is fine – until the person experiences a flare-up, or moves into a new environment with different demands, or perhaps we complete our sessions and discharge them into the wild blue yonder.

So, people with chronic pain can progressively become less aware of how their body actually feels as they do movements, and at the same time, try to apply rules we’ve given them that may not be all that helpful in different contexts.

We end up with the plumber trying hard to crawl under a house, carrying all her tools, while at the same time being worried that she’s not “using her core”. Or the piano teacher trying to “sit up properly” while working with a student on a duet. And the nurse, working one day in a busy ward with heavy patients, and another day in a paediatric ward, trying to “lift properly” using the same technique.

If we want to help people respond effectively to the widely differing contexts they’ll experience in everyday life, perhaps we need to take some time to help people learn to trust their own body, to experience both painful areas – and those that aren’t painful. We might need to help people work out fundamental principles of movement to enable them to have movement variability and flexibility – and to adjust and adapt when the contexts change.

To do this, we need to think about the way we help people learn new ways of moving. There are two fundamentals, I think.

1. Guiding people to attend to, or notice, what is – including being OK about noticing painful parts of the body. The purpose behind this is to help people become aware of the various movement options they have, and the effect of those options on how they feel. We might need to guide people to consider not only pain, but also feelings of strength, stability, responsiveness, reach, movement refinement, subtlety, delicacy and power. To achieve this, we might need to spend time developing mindfulness skills so people can experience rather than attempting to change what they experience. The art of being willing to make room for whatever experience is present – learning to feel pain AND feel strength; feel pain AND relaxation; feel comfort AND power.
2. Guiding people to use their own experience as their guide to “good movement”. In part, this is more of the same. I use words like “experiment” as in “let’s try this as an experiment, what does it feel like to you?”, or “let’s give it a go and see what you think”, or “I wonder what would happen if….” For example, if a person tries to move a box on a ledge that’s just out of reach, how many of you have told the person “stand a bit closer?” While that’s one way of helping someone work out that they might be stronger if they’re close to a load, what happens if the ground underfoot is unstable? The box still needs to be moved but the “rule” of standing close to a box doesn’t work – what do you think might happen if the person was guided to “Let’s try working out how you can move the box. What’s happening in your body when you reach for it?” then “What do you think you might change to make you feel more confident?” (or strong, or stable, or able to change position?).

When we try guiding rather than instructing, we honour the person’s own choices and contexts while we’re also allowing them to develop a superior skill: that of learning to experience their own body and to trust their own judgement. This ultimately gives them more awareness of how their body functions, and the gift of being flexible in how they approach any movement task.

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

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.

Talking past each other: Secret conversations, hidden realities

Take a look at what is written about pain and people living with pain. Look at it with a critical eye. What do you see?

We have descriptions of battling, winning, losing, overcoming, finding a way, getting through, controlling, removing, reducing. Pain is the invader, the alien, something against which we must prevail. And we may prevail using the tools of modern science: we diagnose, we identify, we label and we explain. We treat, we medicate, we use novel movements, graded activity, we avoid sensitising a sensitised nervous system.

The results of this discourse are that when pain does not reduce, is not overcome, cannot be controlled, does not respond to treatment or explanation, we as treatment providers have lost.

Cognitive dissonance is the mental stress or discomfort experienced by an individual who holds two or more contradictory beliefs, ideas, or values. When faced with the situation in which pain “should” have reduced but hasn’t, treatment providers explain away this uncomfortable fact by suggesting that the person hasn’t been following instructions, the treatment wasn’t carried out properly or wasn’t the right treatment, the real cause wasn’t found, the explanation wasn’t thorough enough, the person wasn’t convinced, the treatment wasn’t carried out for long enough, or even that there was a change but the person didn’t recognise it, didn’t make the most of it, expected more.

How often do people living with pain fudge the outcome to avoid displeasing the person treating them? Fail to let the clinician know that yes, there’s still an impact on life despite pain being explained or managed?

Words, or discourse, are as John Shotter put it, “prostheses for moving about through our world’s physicality” (Shotter, 1993). By conversing, clinicians are given a glimpse into a client’s world, but at the same time, clinicians shape that conversation, guiding and leading it in directions that suit the clinician’s purpose. The words used by the client are translated into technical jargon, one prosthesis replaced with another, more “correct” one. Much of the “what it is like” to live with pain is never spoken of, perhaps never verbalised and never made tangible.

Let’s examine some of the expectations we as clinicians might hold about pain (taken from Strong, 1999):

1. Pain is personal and individual. This means that outward demonstrations of pain are discouraged – those who do are labelled negatively and called “distressed”, “disabled”, their behaviour called “maladaptive”, and in some cases even called “histrionic”, “malingering”, or simply “wallowing”.
2. Pain is valid only if “we” all agree on it. Although this discourse is slowly changing there’s a hint still present that if the person doesn’t “recover” the way they’re expected to, there’s something wrong with them – it’s those “psychosocial factors”, not the real pain mechanisms.
3. Suffering, or the loss of self, is some sort of moral or physical failing of the person.  They haven’t “accepted” it, they have ongoing litigation or compensation, they must be getting secondary gain.

I am guilty of these kinds of attitudes. I have been guilty of projecting my own frustration at people who haven’t responded the way I think they ought to. I’ve held beliefs that people should get better because I’ve conducted good therapy and if they haven’t made changes it can’t possibly be my fault, it must be “them”.

In a conversation over the weekend I was reminded that despite generally being someone who deals with my pain (and depression) reasonably well, there is a whole hidden conversation that I rarely engage in, and in failing to acknowledge that part of the “what it is like” to live with pain I’ve missed being compassionate towards myself – and probably others.  That conversation for me was about the never-ending presence of pain at all times somewhere in my body. There is never a time when I’m not sore somewhere. I ache in my lower back, I burn between my shoulder blades, my neck is tight, my MCPs feel hot and bruised, my toes are tingling and sensitive.  I have heaviness behind my eyes. My belly hurts.

The point behind posting this is not that I seek comfort or support or anything from anyone else, but simply to acknowledge that although I know my pain is meaningless, it doesn’t reflect harm or damage and doesn’t pose a threat – it is still present. And in being present, in order to do what is good and enriching and valuable, I must use energy to put that pain experience to one side. I need to accommodate that pain, and take account of it at all times.  And that is tiring. It can be more than tiring, it can be exhausting.

In his article, Strong describes a practice that I guess today would be called mindfulness. He describes “listening for, and working within, the language of visceral experience” to help people transform the quality from one of rejection or judgement, into an “authenticating or welcoming stance”.  He suggests beginning by actively focusing in a relaxed manner on the area which most feels pained, using breathing and concentration. Using this focusing to explore the sensory quality of that area anew – a gentle curiosity. To stay “with” the area – and if working with a therapist, the therapist must “stay with” their client by using “clean language” or the client’s actual words to reflect that the experience has been “authenticated”, or verified by co-construction.

Hidden or secret experiences continue to have an impact although they are rarely discussed. While my experience of pain is certainly personal, the impact it has on me and what I do (and even on what I allow myself to acknowledge) is public. Or it can be if I allow it to be so. By hiding my experience from others I show a public face of energy and effervescence that isn’t complete. It’s not authentic. It suggests to others that I may not have this experience. I wonder how often I/we as clinicians make our therapeutic space safe and nonjudgmental enough for the people we work with to get in touch with those aspects of “what it is like” to live with pain that are hidden, are buried beneath the facade of winning, overcoming, battling, being explained away.

And here’s a final kicker: having been open to being vulnerable, how many of you find it hard to read this honesty? What’s your initial response? Do you want to fix it? Find a solution? Offer me something? Do something for me, to me? What would it be like to simply be present and experience the “what it is like” to be utterly fatigued by ever-present pain? Would you be willing to stay with that experience? And what would it mean to you? Your response will, if you let it, tell you a secret.

 

Shotter, J. (1993). The cultural politics of everyday understanding. London: Basil Blackwell.

Strong, Tom. (1999). Macro- and micro-conversation in conspiring with chronic pain. Journal of Systemic Therapies, 18(3), 37-50.

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

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

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

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

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

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

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

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

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

Let me unpack this a little.

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

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

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

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

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

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

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

 

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

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

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

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

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

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

Not your usual New Year post

Everyone does it at this time of year: you know it, the “best of” or “10 of my favourite” or “looking back over the year” or any of the other variants. Or perhaps “Goals for 2015”.

I’m not going to. Not because I don’t think there’s anything worth sharing from last year, but because I’m trying to look at life differently for a while. You’ll have spotted the theme in my posts on goals and goal-setting recently – I’m not a great fan of setting goals although I’ve personally set goals most New Year Days throughout my life. But I’ve decided that maybe it’s not such a good thing any more, and here’s why.

I think I pointed out that some people treat goal setting in therapy as a sort of “to-do” list. Tick all the goals and voila! therapy is complete. You’re now perfect. Or at least, you’re ready to be discharged. Of course it’s not like that really, as most outcome studies show. People make quite large changes in the first couple of weeks of therapy, then plateau, then slowly but inevitably, move back to how things were before all the fuss began. I could cite you numerous studies across many different fields of rehabilitation and they’ll pretty much show the same thing. Yes, people are better off than before they came to therapy, but overall change is quite slight.

What, I wondered, would happen if we treated this as normal and part of life? What if we saw therapy as providing only a short-term boost? Would it all be worth it?

And I have thought a lot about the “what it is like” to have achieved goals. So my goal this last year has been a very long time one of completing my PhD. I look back on the process as being one of incredible learning, most of it alone, yet supported by so many people. By taking nearly 7 years to chip away at it, the thesis has become part of me, I’ve developed habits and practices that I find very hard to stop. They’ve been integrated so that I don’t think too much about why I look up a series of references, scan the abstract, view the results, then poke about in the methods section and the stats and finally look at the discussion – when it’s the discussion that so many people think is the best part! This, and asking to see the evidence, and see more than a single study, and wanting verification – these habits have become ingrained.

So a goal, PhD done, I can tick off my list. But I’m still doing the things I did as part of my goal. How then, can I have “completed” it?!

You see, I think goals are over-rated. I think we sometimes look at goals and think that if we achieve X we’ll be satisfied. I don’t think this actually happens. Instead, what I think happens is we develop some habits, and these habits embody what is important to us. So, for example, if we think cleanliness is important, we might set a goal of “having no fillings this year”, but to achieve it we need to make sure we clean our teeth, floss and see a dentist. But the habits of cleaning teeth, flossing and seeing a dentist are the actions we need to take to achieve the goal of no fillings. And these habits or actions are how we show that we think cleanliness is important.  And they get ingrained so we actually live our values.

The problem with goals is that things can get in the way of their achievement. If my goal is to save $2000 for a trip away, any number of habits will help this happen. And the value of saving is in that delayed gratification and all the small habits and actions that make putting money aside something that I do. But in the end, if my car breaks down, or a child needs money, or I have other important things to do with that money I won’t have achieved the goal. Yes I might have saved the money, but I don’t get to do the trip. If the bank’s funds are embezzled, I don’t get the money or the trip. If the air fares increase, I don’t get the trip. But I will have been living a whole series of actions that demonstrate an important value I have: I’ll have learned about delayed gratification, learning I can wait, learning that I don’t need to buy a coffee every day. And these small actions are how I live my life every day, rather than that single trip away that I might have had. Because life really is about these small everyday things we do.

So… setting goals isn’t my priority this year. My priority has been to review my values. What really IS important to me. And these are what I came up with:

• balance in life – adequate rest, fun, excitement, alone time, intellectual stimulation, conversation, peace, creative time
• learning – how I do anything is how I do everything
• beauty and appreciation – natural, human-made, flavours, colours, tones, textures, complexity, simplicity

Only three. Because I think that’s quite enough.

And my actions – they’re the important part of this. What I do each day, all those small acts, they’re the things that count towards living my life, or just ticking the boxes.

If you’re a pain clinician, what little actions do you do to live the values you hold?

Goals? I loathe them: What to do instead

I dislike that acronym “SMART” goals. I can never decide whether it’s meant to mean “Specific, measurable, achievable, realistic and time-bound” or “specific, manageable, active, realistic and timed” And if it’s either of those, what’s the difference between achievable and realistic? Or is it meant to be “relevant”?

In previous posts I’ve established good reasons to have a focus for therapy. Unless the focus is something valued by the client, it’s either unlikely to get done or it’s not their goal and they’re going along with it to keep you happy. Goals, targets or focus are useful, and the logic goes that unless you have them you won’t know where you’re going or when you’ve got there.

I’m not going to argue against the idea of having a focus to therapy. I just think there are risks in having goals, like some sort of checklist that says “If you achieve this, you’re all good”.

Seriously, that doesn’t work in real life. That’s the same kind of logic that says “if I just buy enough things I’ll be happy”, “if I just earn a bit more I’ll be happy”. While there’s a bottom line below which it’s hard to think beyond survival, above that line, having stuff, and even doing things as an end in themselves doesn’t fulfill for long.

What gives forward momentum, enrichment, fulfillment and can’t be ticked off like some shopping list is recognising that life is actually a whole series of actions and events that, when we think back on them, make up a good life. The richer events and experiences and actions feel good and fulfilling. The empty routine and humdrum things feel deadly dull and empty.

When I think about the purpose of therapy my focus is helping people to live the kind of life they value, doing the things they believe are important. Given I don’t want to be a long-term feature in a client’s life (for all I love them, I’d rather they were doing it themselves), my focus is on helping them work out what makes a rich, fulfilled life they can look back on and feel satisfied. My job is to help them develop skills and strategies to carry out the actions needed to live a life aligned with what they value.

Let me unpack this a little.

Many people I see place value on being a good parent, a loving partner, a reliable employee. When I see them, their pain has interfered with doing the things they believe demonstrate “being a good parent” or “being reliable”. Pain has moved in to their lives, and come and sat on their laps right in front of their face so that all they can see is pain.  If I ask someone in this state to “set goals” they laugh, rather sarcastically sometimes, and say they don’t have goals, they can’t think of anything and what’s the point anyway. Perhaps not in those words, but the meaning is clear.

Instead, I ask them “what would you be doing if your pain was less of a problem for you?” Sometimes I’ll even hand over a plastic fairy wand I have, and suggest they dream a little. It’s then that the passion takes over – they’ll say “I’d be out working, having fun with my friends, caring for my family” – and the list goes on! If I stopped there, though, I’d be holding a tantalising dream just out of reach, which is cruel, so I don’t. Instead I ask why these things are important.

That’s how I find out that “family is everything”, “I just love creating”, “I need my friends”.

Then I switch tack for a moment and ask them “How well is what you’re doing to deal with your pain right now working to help you be the kind of person for whom family is everything? How well is what you’re doing with you pain helping you create?”

The reason for this tactic is to help generate what Acceptance and Commitment therapists (ACT) call “creative hopelessness“. Because motivation to change comes from inside – that it’s important enough, and the person is confident that change can happen.

I then suggest two things: 

1. Is keeping pain happy more important than family ?(and yes, I know I’m personalising and objectifying pain here, and yes it’s an experience not a thing, but it works OK!)
2. What would happen if you made a little room for pain to be there while you’re doing things that contribute to you being the kind of parent you want to be?

What I mean by this last statement is that pain can interfere with doing that things that help you feel you’re being a good parent. And that can lead to either completely abandoning those activities, or doing them while clutching resentfully to “the pain that interferes”. What if you attended to the value or importance of being the kind of person who is a good parent instead of focusing on the irritation, frustration and anger of having to bring pain along for the ride?

• For many people, the things they believe contribute to “being a good parent” far exceed what they can currently achieve. So they give up and get demoralised. They both have their pain AND they don’t manage the very things they most value.

Now it’s here that I could begin to “set goals” and suggest we work towards them using all the traditional elements of goal setting. And that probably has excellent value. But here’s the catch: often we hold very strong internal rules about how these things should be done so that unless we can do them exactly the way we think they should be done, we’re not satisfied. And for many people this fails to recognise that as time goes on, life too goes on, and we change the way we do things to accommodate new habits or capabilities. So I try to begin a process of developing flexibility – and using the values a person identifies as a compass rather than a checklist.

What would happen if we thought a little about the range of things people might do to convey “being a good parent”? Maybe it would mean going to the children’s sports games and being a spectator. Maybe it would mean making lunches, helping to do homework. Maybe it would include listening while a kid tells you about his or her day. Many of these things can be done with pain present. Many might require altering how they’re done to accommodate having pain present but provided that they express the underlying value of being a good parent, can be fulfilling.

What’s important is less about the what a person does, and a whole lot more about why and how they do it.  When “being a good parent” becomes the direction we live (because we can never tick the box that says “being a good parent” is complete), then we focus on why and how we do it. Attention goes away from “but pain stops me”, and towards discovering all the ways “being a good parent” can be lived.

Often it’s through doing this that people seek new coping strategies so they can extend what they do. People may “set goals” or future actions they want to take but instead of feeling frustrated and dissatisfied, they begin to to take actions that bring them closer and closer to living the life they want to live. And that, my friends, is what I think “goal setting” is about.

This festive season is a good time to consider what’s important in your life. What actions are you taking to live a value-filled life?

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

Warning: there is an earworm contained in this post!

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

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

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

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

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

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

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

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

What did they find?

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

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

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

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

What this means

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

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

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

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

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

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

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

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

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

 

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

More Managing Migraines without Medication

Anyone familiar with migraine will know the first signs of an impending attack. What might be a little less familiar is the precursor to the “first signs”, and what may also be unfamiliar is the thoughts that accompany those first symptoms. Today I want to talk about ways to manage this phase of a migraine – without medication.

As an aside, some people have suggested that there are ways to completely get rid of migraine, often suggesting that one of the problems could be around the numerous nerves that innervate the face, neck and scalp. One of the common suggestions is to have chiropractic or osteopathic treatment to “do something” to the nerves in this area. I put the “do something” in quotation marks because I really don’t know what the something’s are. This is not to say that I don’t think this kind of treatment works, more that I am not familiar with the purported mechanisms for how hands on treatment helps. My focus is, however, on what individuals can do for themselves to manage a migraine when or if, or even alongside, other treatments have not been completely successful. Or perhaps because of individual choice not to pursue other treatments.

One of the unique aspects of being human is our ability to think about situations in certain ways.  These cognitions allow us to prepare for what might occur in light of what has happened in the past and what we predict might happen in the future.  But as many of us know, the accuracy both of our memories and our ability to pull together all the relevant information is not exactly high.  We’re inclined to notice only salient features, recall recent events, emotionally-laden events, unusual or novel events – and make predictions from “rules of thumb” or heuristics.  These shortcuts reduce cognitive burden, but also reduce accuracy.

‘Nuff said – how we evaluate the early warning signs of migraine has an effect on at least two things: our emotions and our actions.  Let me explain.

Some of the “early warning signs” for migraine can be, for me, floating sparkles that float up and across my field of vision.  When I see them my first thought is “Oh no, when is it going to hit?”

What sort of emotion do you think I generate with that thought? Yes – you’re probably right, it’s fear or loathing! Dread, maybe.  Whatever the name you give to this thought, the effect is to increase my heart rate, skin conductance, respiration, and probably blood pressure.  There are probably other physiological changes that my body goes through because I’ve learned to associated those sparkley lights with the onset of nausea and headache.  The thing is, that no matter how accurate my thought is – it’s not going to settle my headache! And the physiological changes are not going to help either.

A cognitive behavioural approach to this common situation is to take the view that I can self manage my headache because I can learn to view my situation differently – and take action to change my response.  That’s the bottom line of self managing chronic pain.  Nothing is quite as empowering as knowing that there are things that I can do to feel more in control, to reduce my distress, to feel more confident about managing my situation.

Often just by recognising the effect of the thought “oh no, here we go again” can interrupt the process of winding up the body’s response to migraine aura.  Add to that some skills in self regulation – particularly breathing diaphragmatically and releasing muscle tension – along with a coping statement like “I can manage with this if I just take some time now”, and we have a much more positive take on what living with a migraine might be like.

In terms of actions, thoughts influence emotions, and emotions can influence actions (though not inevitably or we’d all still be like two year olds, having tantrums in the supermarket!) We do learn associations quickly, and this means that we can mistakenly associate the onset of migraine symptoms with something unassociated.  In this way, triggers can be mistakenly identified, and with the usual advice being to avoid triggers, lead to a life full of restrictions.  It can be quite hard to break that incorrect association because of the intermittent nature of headache.

Actions can, however, also be directed by thoughts.  If I catch myself thinking “oh no, here’s another afternoon of hiding in the dark and feeling rotten”, replace that thought with a coping one “if I take a few minutes to relax, breathe deeply, and make some alternative plans”, I might be able to slightly modify what I need to do and even avert the migraine.  Even if I continue to have the headache, I’m more likely to be able to keep doing things that need to be done.  Even when triggers are present.

By learning to keep doing some things even when a migraine is present, the anxiety associated with being around a trigger can be reduced so at least I’m not winding my migraine up, and I may even be able to tolerate that possible trigger in the future.

I don’t want anyone to think I’m suggesting that this completely abolishes the migraine.  I know only too well that it doesn’t! However in combination with medications when necessary, it does mean migraines don’t dominate completely.

Kelman L (2004). The premonitory symptoms (prodrome): a tertiary care study of 893 migraineurs. Headache, 44 (9), 865-72 PMID: 15447695
Thorn, B., Pence, L., Ward, L., Kilgo, G., Clements, K., Cross, T., Davis, A., & Tsui, P. (2007). A Randomized Clinical Trial of Targeted Cognitive Behavioral Treatment to Reduce Catastrophizing in Chronic Headache Sufferers The Journal of Pain, 8 (12), 938-949 DOI: 10.1016/j.jpain.2007.06.010