Pain, by any other name, still hurts

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

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

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

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

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

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

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

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

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

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

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

 

 

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

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

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

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

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

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

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

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

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

Making self-help more helpful

One of the things that appeals about self-managing chronic pain is that it doesn’t require endless appointments. If life is for living, why spend it sitting in a waiting room? (they never have up-to-date magazines anyway!)

Our problem as health providers is that we don’t know whether all our great self-help recommendations actually get done by the people we see. After all, we’re not there in the morning when they get up, or late at night when they’re trying to get to sleep! Most of us simply hope that –

• the person is sufficiently motivated (thinks what we’re advising is both important and they’re confident they can do it)
• can organise themselves to ‘get around to it’ before they forget what we’ve suggested
• they’re telling us the truth when they say they’ve been doing whatever it is we’ve suggested

Quite a while ago I read about a very simple strategy to help people be more likely to carry out their exercises – and posted about it here. In that study by Christiansen,  Oettingen, Dahme, and Klinger (2010), two 30-minute sessions involving identifying the reasons for making a change (to increase physical activity), and the potential obstacles to actually doing it, were held.  For four of the obstacles identified, the participants were helped to generate solutions that would help them get around the obstacle and engage in exercise.  To do this, ‘if-then’ statements were developed.

An ‘if-then’ statement involves identifying a specific situation such as ‘when I get home from work’, then indicating the behaviour that will occur ‘I will get my running shoes out and go for a walk.’

In the study I’ve looked at today, the same strategy was applied when delivering a self-help booklet for people with anxiety. In this study, Varley, Webb and Sheeran contacted (via email) the students and staff at a university in the UK.  People who were already being treated for anxiety were excluded, and the remaining participants (251 of them) were randomised into three groups.  All of them completed baseline Hospital Anxiety and Depression Scale (HADS, developed by Zigmond and Snaith, 1983) and the state version of the State-Trait Anxiety Inventory (STAI; Spielberger, Gorsuch, Lushene, Vagg, and Jacobs, 1983).

One group received no input, while the other two groups were asked to go to a web page where they downloaded a self-help booklet.  Both of the booklets were the same eight-page booklet containing psychoeducation, diary sheets for self-monitoring triggers and feelings, and two relaxation techniques – a breathing technique that could be used anywhere, and a longer relaxation exercises that could be used daily at home.

The experimental group, in addition to the booklet, were also asked to develop two ‘if-then’ plans – one that involved the participant identifying a specific anxiety-related symptom and to associate it with using their newly learned breathing technique. eg “If I feel my heart racing, then I will use my breathing technique to relax.” The second plan asked participants to identify when they might be able to do their deep relaxation technique into their daily routine. eg “when I get home at night, then I will do my deep relaxation.”

When the participants were reviewed eight weeks later, as expected, neither the control group nor the standard self-help group differed very much.  However, the self-help group that received the implementation intentions (if-then) supplement had significantly lower scores on the HADS and the STAI.

Interestingly, the experimental group also thought the booklet was more ‘user-friendly, used the relaxation techniques more frequently, were better at detecting the triggers of their anxiety, and experienced the benefits of using the relaxation techniques.’ So basically, quite an effective and yet simple strategy!

For readers with a critical eye for statistics and methodology, this study is a nice example of the use of multiple statistical methods to determine outcomes – a combination of ANOVA, Sheffe post hoc tests, multivariate analysis, correlations, and bootstrapping to test direct effects – and what’s more, they also reviewed ‘caseness’, or whether the changes that were statistically significant were also clinically significant.  This was achieved through identifying participants with scores over 11 on the HADS at pre- and post-testing.

OK, so lovely for people with anxiety: how might this apply in self-management of pain?

Well we’ve already had one demonstration of this method on exercise for people who have chronic pain (Christiansen and colleagues), and I wonder if it might not make an effective addition for people who have high pain-related anxiety.

One of the effects of anxiety about pain is to reduce how readily people can bring coping strategies to mind (go here for some of the references to the Pain Anxiety Symptoms Scale).  If we identify people who have trouble thinking straight when they’re sore, we can help them generate specific ‘if-then’ statements to help them get by.  Here’s an example:

Jenny gets worried when her pain starts to increase, especially when she’s busy at work.  Her therapist helps her identify the ‘early warning signs’ that signify the potential for difficulty coping.  These are:

• several deadlines occurring together
• jaw tightening and frowning
• multiple interruptions

She chooses one of these, and with her therapist, identifies several strategies:

• breathe and let go
• stand up and stretch
• assertively setting a limit

She then constructs an “if-then” statement like this:

• “If I have several deadlines occurring together, then I will stand up and stretch”

She writes this down and puts a copy of it beside her computer at work.

The good things about this strategy are that:

• it’s generated by the person (who therefore gets involved in identifying personally relevant cues and solutions);
• it’s brief (so easy to remember!);
• it does the thinking and problem solving beforehand (when thinking can be much more creative, and the situation may even be pre-empted);
• it involves a different behaviour (it’s an action, which is much easier than a cognitive strategy when anxiety is elevated)

Give it a go with your patients – and see whether it’s something they might find helpful.  Or even use it yourself!

Varley R, Webb TL, & Sheeran P (2011). Making self-help more helpful: a randomized controlled trial of the impact of augmenting self-help materials with implementation intentions on promoting the effective self-management of anxiety symptoms. Journal of consulting and clinical psychology, 79 (1), 123-8 PMID: 21171737

Working and chronic pain

If there is one aspect of chronic pain management that has received more attention than returning to work, I don’t know it! In 1995 when I started working at my current workplace, work was almost a dirty word. I was accused at one time of being a ‘Siberian workcamp’ Commandante because some people thought it was cruel to ‘force’ people with chronic pain into the workplace. Thankfully this attitude has changed over the years, and most people recognise that working when you have chronic pain, while difficult, is achievable and good for health. At the same time, returning to work with pain has never been especially easy and there are numerous issues to work through.

Today is the first day I will discuss the practical aspects of returning to work with the current group of people participating in the three week pain management programme. We’ve already discussed what work is (something to organise your day, social role, productive activity, source of income and self esteem, identity, social contact – that list goes on!), and each participant has looked at how important returning to work or being at work is, and how confident each individual is to achieve that goal. Each person has looked at the ‘stages of change’ cycle (Prochaska and diClemente) and identified where he or she sits on that model.

The findings in this group are pretty typical of most groups that I’ve worked with. Most people indicate that work, however they conceive it, is pretty high in importance. At the same time, most people also indicate that their confidence to achieve their goals in work is lower than the importance – and some cannot even rate their confidence above 0/10. Many of the participants indicate that they’re ambivalent about returning to work – probably in the ‘contemplation’ or ‘preparation’ stage in the stages of change model.

What are the issues?
Amongst the issues, one is prime: the ability to attend work consistently, to be reliable as an employee. This is a real challenge for many of the participants in this programme, and I don’t see that they are very different from most people with long-standing chronic pain.  Until being in the programme, these patients have often relied on pain intensity as their guide to activity level – and this has often lead to a saw-tooth pattern of ‘boom and bust’, or a gradual reduction in activity level to the point where they are quite deactivated.

Another critical issue is the difficulty talking about their pain and any functional limitations – or even the ‘work-arounds’ that people have developed to manage their pain – with employers.  The belief is that if chronic pain is mentioned, ‘no employer will have me’.

And yet another issue is the difficulty translating generic pain management strategies into the workplace. Things like activity management (aka ‘pacing’) or regular stretch breaks or relaxation are not thought to be acceptable in a workplace, and communicating about the value of doing these things is, as I’ve mentioned above, incredibly difficult.

This is an area of pain management that I think has been omitted.  In the rush to ‘get people fit enough’ to return to work, or to ensure they have ‘pain management’ often delivered in a clinic setting, I think the core problem has been either ignored or glossed over.  And the core problem IMHO is that people with chronic pain need to feel confident that they will succeed if they attempt to return to work.

To feel confident, people need to have their individual concerns addressed, and to develop strategies to help them work through the challenges of applying pain management in the work environment.  Because, like it or not, the work environment is different from a clinic, the home, or even within a family.  We ignore this at our peril.

I am not an advocate of dividing the delivery of pain management and vocational management.  The two need to go hand-in-hand.  So often return to work is seen as separated from healthcare.  It’s not – it’s as integral to people’s wellbeing as being able to use the toilet or have a bath, to be able to walk to the shops, to manage the household tasks, or to budget and do the grocery shopping.  At the same time as we consider functional movements, we also must consider work activities.

This paper by Cost-Black, Loisel, Anema and Pransky elaborates on the current state of play with respect to helping people return to work.  I’ll be discussing more of this tomorrow – and the day after!  But, I do believe that this paper omits a crucial aspect of returning to work, and that is the issue of self efficacy for returning to work and managing pain.  The ‘how’ of returning to work is more than accessing selected duties, or becoming fit enough, or even coordinating the process with all the various providers involved in the process.  It is all of these things, but if we fail to help the people we are trying to assist to feel more confident, it is unlikely to work.

And we face enormous challenges in this work – economy, conflicting advice from various providers, a sense of urgency to ‘move quickly’ by insurers (often too soon and ill-coordinated), clumsy administrative systems, lengthy time off work (in this group of people one person has had 30 years away from the paid workforce), and loads of anxiety and fear of failing.

I don’t see the problem of return to work as one of motivation on the part of the individual – motivation is often about how important an activity is, and how confident the person is that he or she can do it.  At least in the people that I see, it’s the latter that creates the resistance to move on.  Working can be SO important that to fail would be devastating, so people just don’t attempt it.  This is maybe what we need to focus on.

Costa-Black, K., Loisel, P., Anema, J., & Pransky, G. (2010). Back pain and work Best Practice & Research Clinical Rheumatology, 24 (2), 227-240 DOI: 10.1016/j.berh.2009.11.007

Values informing goals

Unusually for me, this post is not associated with a piece of published research.  I have been mulling over ways to help people set goals that are really meaningful to them rather than superficial ones that are all too easily forgotten or avoided, and being informed by ACT (Acceptance and Commitment Therapy) I’ve been looking at values clarification as one way of tapping in to this.  At the same time as doing this I’ve been doing a little reading around the occupational therapy Kawa model which uses the river metaphor to describe ‘life flow’, or words to that effect.

I’m not a strong advocate of descriptive models really, because I am more concerned about models that help to explain or predict phenomena in the world, but at the same time I use metaphors a lot in therapy.  Metaphors are a bit like the Biblical parables – vignettes that help illustrate or present a concept in language that the person understands.  Some of the metaphors I use are the car – pain is like an unwanted hitch-hiker that jumps in and sits on your lap while you’re driving, and while we may never get the pain to go, we can shift it into the back seat or the boot (trunk) of the car where it’s not in the way as much.  And life balance is illustrated by the four wheels that all need a similar amount of attention or the vehicle won’t travel straight; the direction the vehicle is heading in represents the values while the road is the specific set of tasks or activities the person is engaged in.

I’ve talked about a squatter moving in to the family home, eventually sitting on the couch and maybe even on your lap getting in the way – pain can be like that.  Again, it might not completely leave your premises, but you might be able to help it shift into the garage or garden shed while you carry on with what is important to you in your home.  And tools in a toolkit representing the various ways to approach a situation – you can grab a hammer, but that might influence you to think that all your solutions must involve nails, where it might be more useful to pick up a spanner or a screwdriver, depending on the situation.  And you need portable tools that you can carry with you rather than having to go into the workshop to use a router, but a router is useful for certain other tasks.

Why this talk about metaphors? Well, the river metaphor is one that I’ve included in the worksheet I’m including in this post.  I’ve found it really helpful when working with clients so they can see that there are many ways to achieve a specific goal, or that ‘live’ the values that are important to them.  Yes, we discuss the riverbed which includes all the contextual things like community and family and even personal strengths and vulnerabilities; we also discuss the things that can divert us from our intended path – like the trees that fall in the way (adversity or events that stop us in our tracks), the dammed up area where community and family are not ready to allow us to go – and what happens when, instead of expressing and ‘fnding a way through’ the thoughts and emotions, they break through the dam and release pent-up energy while often destroying the very things that were containing and constraining movement.

Luckily for me, living in Canterbury, braided rivers are a feature of our landscape, so it’s easy to talk about the myriad little streams and rivulets that wander across the riverbed and how they change depending on weather, water flow from snow melt, or even dry up when there is insufficient rainfall.

So this exercise starts with suggesting that some sort of magic (I’ve indicated a wand doing the trick here) that can take away the impact or effect of the pain – the negative thoughts and emotions, the fear of flare-ups, and the functional restrictions.  I ask the participant to think about how someone looking at their lives might know this magic had happened – what would be important for the person to do now that they didn’t have to fear the effect of their pain.  Then I have a list of values to start the thinking process for identifying the values that lie beneath the activities.  The values list is by no means exhaustive – and really, I do think this process is better when it is discussed rather that simply a pen and paper exercise – but it’s there to start the thinking and help expand beyond day-by-day activities.  It’s about finding out why getting up and dressed is so important, and what the person gets out of being at work, and what they would like their friendships to be about, and how they’d like other people to view them at the end of their life.

Once some values are identified, I ask the person to choose five – which, believe me, is not easy to do!

Then write down the value and a sentence that represents what that value looks like when it’s in action.  For example, if a value is to be a ‘caring and loving parent’, a sentence might be something like ‘I honour and care for my family to the best of my ability’. If a value is ‘Calm’, the sentence might be ‘I remain calm even during difficult times’.
One of my values is to have a balanced lifestyle – so my sentence could be ‘to make sure that every day has a balance of work, creativity, relaxation and time with people’.

The next step is to use these values sentences on a daily basis – when making a decision about engaging in an activity or establishing a goal, to ask whether the activity or goal represents or is aligned with any of the values the person has chosen. If it doesn’t – then maybe that goal or activity is not going to contribute to what is important in the person’s life.

The worksheet is here – in Word format – and you’re welcome to alter it and turn it into something that might work with your clients.

Accepting what life throws at ya

I was looking to write about a new treatment, or something that is innovative, and you know, there isn’t a whole lot new out there in pain management land. If it wasn’t for Lorimer Moseley’s work on motor imagery and Lance McCracken’s work on acceptance, I think we’d be doing pretty much what I was doing in pain management in 1990, with perhaps a little less emphasis on core stability and muscle imbalance!

Anyway, rather than finding some new treatment, what I did find was something more to add to the concept of psychological flexibility and acceptance as a really important aspect of learning to live with a persistent pain problem (or, for that matter, any negative thing that life throws at ya!).

Acceptance is not a very well-defined concept – and it’s not something we’re very good at doing in our modern society.  We’re invited to go out there and get what we want, change what we don’t like and not put up with second best.  We throw out our old and dated clothing, furniture, mobile phones, laptops; we upgrade our physical appearance with botox and face peels and fake tan and liposuction; and when a health problem comes along we almost take it for granted that there will be a way to alleviate or reverse or somehow fix what we’ve got.  To think that there may be some things that need to be lived with and accepted doesn’t come easily.

McCracken describes acceptance of pain as including ‘a willingness to engage in activity with pain present and to allow pain to register in experience without attempts to control or avoid it.’ [emphasis mine]

The language I hear from patients and other health providers often uses words like ‘control’ or ‘fight’ or ‘overcome’ pain, as if it can be beaten into submission and life will carry on as it was before.  I don’t think this is what really happens, at least not with chronic or persistent pain.

For one thing, pain doesn’t often get completely ‘beaten’ – most of the time it’s still there, albeit somewhat less intense maybe, but still present.  And no-one has a pain experience without learning something from it – maybe that some of the things that used to be easy are not, and that’s unpleasant; maybe that it’s not a good idea to do specific movements; maybe that ‘next time’ it might be a good idea to try this, or that.  Life is never exactly the same as it was ‘before’.

Acceptance involves being willing to recognise that pain is present – and that it’s still possible to do important or valued things without controlling or avoiding the fluctuations that occur with pain and activity.

In this paper, McCracken and Zhao-O’Brien explore whether the concept of acceptance of pain might be also related to acceptance of  ‘a wider range of undesirable experiences these people may encounter, such as other physical symptoms, experiences of emotional distress, or distressing thoughts.’

It’s not uncommon for people with persistent pain to go through unpleasant investigations or procedures, to have distressing responses from other people to their predicament, to maybe have to change job (or even lose a job), to feel unhappy or to get depressed, to worry about the future and what it might bring.  This study sought to look at whether the people who are more prepared to accept and be willing to ‘have undesirable psychological experiences without attempting to control them’, might be functioning better and suffer less.

The study involved a group of 144 people referred to an interdisciplinary tertiary pain management centre in the UK.  Before treatment, they completed a set of questionnaires including several about acceptance.  And as usual, a whole bunch of statistical things were carried out on the results.  I won’t be too descriptive about these stats, but basically, multiple regression analyses were carried out to ‘establish the contribution of general psychological acceptance to patient functioning, after the variance contributed by patient background characteristics, pain intensity, pain acceptance, and mindfulness was taken into account.’

What they found was ‘a positive relationship between general psychological acceptance and functioning, suggesting that higher levels of acceptance predicted better emotional, physical, and psychosocial functioning.’

In other words, the people that were prepared to sit with, or make room for the negative experiences that people with chronic pain often experience, and not try to control or avoid them, seemed to feel better and do more.

Now there is a huge difference between ‘putting up with’ or ‘tolerating’ these negative things, and accepting them.  So this is not about being stoic and uncomplaining, nor about pretending that they’re not there and they don’t affect how people feel.  It is much more about recognising that these things are happening, and allowing them to register without trying to rush through them or ignore them.

I want to add a couple of points here – this finding suggests that we do know that there is some sort of association, but we don’t know the direction of this.  Maybe people who are less prepared to accept unpleasant things seek treatment more.  Maybe people who have chronic pain become less able to accept unpleasant events.  At this stage it’s not clear.

What we can suggest is that if we can help people become more willing to experience these negative things, this may be one way to help people with chronic pain function better and feel better.

How we do this seems a little less straightforward, but ACT certainly seems to give us some clues.  Being ‘mindful’, or able to experience ‘moment-to-moment awareness while in contact with whatever emerges in experience’ is one way to start that process.  Allowing a gentle ‘knowing’ of an experience without judging it, controlling it, or trying to avoid it – not easy!  Being aware of how our use of language, while something that has given humans such an array of helpful problem solving tools, can also be a trap that can lead us to think we are our thoughts – rather than recognise that we have thoughts that we can choose to act on – or not.

I’m a baby in terms of learning how to help people be more willing to choose to commit to an action that is important while at the same time being aware of, and able to accept, some of those not so comfortable experiences that arise.  But I’m learning – and I’ll be writing about my experiences as I continue doing so.  And yes, I’ll be using these same strategies in my own life too.

McCracken, L., & Zhao-O’Brien, J. (2010). General psychological acceptance and chronic pain: There is more to accept than the pain itself European Journal of Pain, 14 (2), 170-175 DOI: 10.1016/j.ejpain.2009.03.004

A dilemma – ACT-ing Well, Living Well

As part of looking at ACT, I’ve been looking at values and committed actions that people are taking (or could take) to make their lives rich and fulfilling.  I’m currently mulling over what to do in a case where the client I’m working with is actually quite happy with his life, and given that we can’t eliminate his pain, he doesn’t really want to make any further changes.  It makes setting goals quite difficult!

I took a quick look into the journals to see whether there have been any studies using an ACT treatment framework in which the effect of looking at personal values was directly examined, and found a paper by Branstetter-Rost, Cushing and Douleh, published in the Journal of Pain in August last year.  In this study, an intervention in which individuals considered their personal values (in other words, what is important to them, what influences the direction in which they take actions) was carried out, and its influence on tolerance to a cold pressor test was evaluated.

Two previous studies have shown that low levels of experiential avoidance and high acceptance are reportedly related to higher pain tolerance, conversely one would expect that high levels of experiential avoidance and low levels of acceptance would be related to lower tolerance to pain.  A couple of definitions here: pain tolerance is about how long a person is prepared to ‘put up with’ pain before attempting to move away from it, as opposed to pain threshold which is the point at which the person identifies the stimulus as being painful.

Experiential avoidance is about trying to avoid ‘sitting with’ or allowing negative emotions, thoughts or sensations to be present, while acceptance is about allowing any and all experiences (positive and negative) to be present without judging them or necessarily responding to them.

Several treatments for chronic pain have included the use of distraction – or purposeful use of attention away from the pain – but this has recently been shown to increase the instrusiveness of thoughts about pain, and heighten the negative experience of pain.  So the major difference between an ACT ‘acceptance’ and mindfulness approach is that by using mindfulness, people are encouraged to nonjudgementally experience all that is happening ‘now’; or ‘sit with’ any and all experiences whether they’re unpleasant, or for that matter, pleasant.

Back to this study about values.  Values are thought to motivate behavior and facilitate acceptance despite the experience of painful emotions and stimuli. People commonly allow themselves to experience difficulty, challenge, struggle and yes, pain, in order to achieve something they value – think of athletes, dancers, musicians and even academics!

In this study, individuals who received an acceptance intervention were hypothesised to have greater pain tolerance than those who had no treatment. It was further hypothesized that ‘adding an ACT-consistent values exercise to the acceptance intervention would result in even greater pain tolerance.’

Students from the Missouri campus participated in this experiment for course credit – the cold pressor test is not my cup of tea, and I think I’d want something for my effort!

The control group received 20 minutes of their State Constitution read aloud by an experimenter, to give this group the same contact time as those in the other two conditions.  The Acceptance-only group received 20 minutes didactic training and experiential exercises in the concepts of ‘control as the problem’ and using exercises and metaphors such as thought suppression and attempts to forcibly change one’s feelings, along with defusion and willingness exercises.  (for more details of these, keep reading over the next few weeks!).  And finally, the experimental group, received the same 20 minute teaching as the Acceptance group, but also “the experimenter referred to the participant’s top-ranked valued-life area, and engaged the participant in a 2-minute imagery exercise involving endurance of physical pain for the purpose of that value.” The example was given of a person willingly swimming in icy-cold water to rescue a family member.

The researchers then asked participants to plunge their hand into water that was cooled to between 0 – 2 degrees celcius for up to 600 seconds.  Pain threshold was recorded when participants identified that they could first feel pain; pain tolerance was recorded in seconds from the time the person put their hands in the water, to the time they removed their hands; and pain ratings were made using a visual analogue scale anchored by faces representing various levels of pain expression, and the words ‘no pain’ and ‘worst pain’.

The results – acceptance plus values made a big difference in terms of pain tolerance, but not threshold. This is great news!  It’s not surprising that threshold isn’t different from the other groups, because threshold is simply the point at which people start to experience something as painful – it’s the tolerance to something unpleasant that makes the big difference in terms of whether someone will or won’t persist with activity (and has a direct influence IMHO on disability).

OK, so what does this mean for me and my patient?

Well, I struggle at this point because my patient, although he places a good deal of value on his family and being a good parent, doesn’t feel that his pain gets in the way of him doing so.  This is despite him not working, being unable to drive very far, carry out his own grocery shopping, or even mow his own lawns.  Perhaps I’m being very judgemental here, but for most of the people I work with, these are the sort of activities they want to be able to do as part of being a ‘good parent’, or a ‘good provider’.

Reflecting on the stages of change model of Prochaska & DiClemente, perhaps he’s simply at the precontemplative stage – maybe he lacks confidence to even consider that there may be the possibility of doing these sort of activities.  Maybe he’s fearful of the consequences – increased pain, more fatigue, loss of current routine, risk of failing, loss of his benefit, perhaps even loss of family system stability.

I’m undoubtedly a newbie at using ACT, and I’m certain this patient is experientially avoidant.  To me it does seem as though he may have adopted, or ‘fused with’ the identity of being unwell, or an invalid.  While he does appear to be ensuring values that he holds are being met, I wonder whether there are aspects of his life that he’d like to change – but isn’t ready to tell me about yet.

In the spirit of ACT I’m ‘sitting with’ my own frustration at not yet knowing how or what to do next.  My instinct is to keep the door open somehow by indicating that perhaps now isn’t the right time for him to learn about self managing his chronic pain, and let him know that when he is ready with some areas he’d like to change, we’ll be ready to see him.

In the meantime I hope the discussions we’ve had about what is important to him now and in the future will have started him pondering, and that he’ll have the opportunity to explore what we’ve discussed with someone who will support him to begin to see possibilities.

Branstetter-Rost, A., Cushing, C., & Douleh, T. (2009). Personal Values and Pain Tolerance: Does a Values Intervention Add to Acceptance? The Journal of Pain, 10 (8), 887-892 DOI: 10.1016/j.jpain.2009.01.001

Maintaining change

I’m sure we’ve all seen it. The person comes into a pain management programme, gets excited, does really well during each session, enjoys the company and makes huge gains – then the programme ends and — FIZZLE! It all stops.

Some critics suggest that any change obtained during a short-term programme (such as a three-week pain management programme) can only be short-term.  That to really make a difference to habits of a lifetime needs a therapist to carry out at least 12 weeks of individualised input.

This study by Christiansen, Oettingen, Dahme and Klinger, shows an extension of the motivational approaches based on Motivational Interviewing, integrates it with traditional problem solving, drags in a bit of goal achievement theory and ties it all together in two half hour sessions – and produces a significant change in functional outcome.  How so?

Importance and confidence

The two important drivers of action seem to be how important an activity is and how confident a person is to achieve it.  In this study, a group of patients was asked to rate the importance and confidence to ‘improve physical capacity’.  They were then asked to list four positive aspects associated with making this change – eg getting in shape, having fun, distraction from pain.  They were then asked to list four negative aspects of the reality standing in the way of exercising more (obstacles) eg not enough time, being too tired, inconvenient, increased pain.

The participants then elaborated on one positive and one negative in alternate order.  eg  ‘I will feel better if I exercise more’ because ‘I will have better muscle definition, I will lose weight, and I will feel proud of myself’, and ‘I will not have enough time’ because ‘I have a busy life, my kids will need me to do things for them, and I will have to take work home.’

The second 30 minute session involved problem solving each of the obstacles, then develop ‘if-then’ plans or implementation intentions that circumvent the obstacles.  Problem solving involved the use of cognitive behavioural strategies such as addressing unhelpful thoughts and beliefs, evidence-based models (eg pain-related anxiety and avoidance), Socratic questioning (guided discovery) to identify underlying obstacles and automatic thoughts.

Then each patient wrote out a card that summarised the two sessions so that they could refer to them during the following month when the programme had finished.

Each card had the four positive reasons for exercising, and the four obstacles listed.

Underneath this was an example of mental elaboration, or expanding on one of the positive reasons for exercising, and one of the obstacles.

CBT-oriented problem solving was completed underneath this, providing evidence for exercise such as moving doesn’t cause damage, exercise releases endorphins, not exercising leads to lack of fitness and fear of moving.

And finally, two examples of ‘if-then’ plans were included, personalised to that individual:

‘If it is Monday or Wednesday I’ll park the car a block away from work and walk from there.’

‘If my kids want me to do something for them, they’ll have to come with me to walk the dog that night.’

The results

The results from this study showed that by doing this very brief intervention, participants were able to increase their engagement in exercise, and obtain better outcomes in terms of fitness and reduction in disability.

What? CBT in two half-hour sessions?!

While I’m not sure this would work in all cases, the use of a specific strategy targeting one issue in pain management to maintain engagement in exercise seems a really effective use of clinician’s time.  I’m keen to try this approach out – it’s not a ‘new’ or untested approach, after all problem solving and motivational interviewing has been included in pain management for some time.  What is new is targeting the specific concerns that influence action rather than assuming that because the person is there and attending pain management they are able and willing to carry on with it at home.

A couple of things I really liked:

• it’s really specific to the individual and works with their real concerns
• it directly addresses the obstacles that we know will be there and works through ways to get around them
• it doesn’t rely on people to remember how to problem solve, it involves writing it down and making it visible
• it builds on positive reasons for making changes
• it doesn’t go overboard and try to solve ‘everything’!

I’d love to hear if anyone else has given this a try.  I’m keen to use it on myself, knowing that there are days when I simply don’t want to get out there and exercise, even though I love walking the dog and dancing!  I’ll keep you updated on my progress, but drop me a line if you have a go and let me know your results.

Christiansen, S., Oettingen, G., Dahme, B., & Klinger, R. (2010). A short goal-pursuit intervention to improve physical capacity: A randomized clinical trial in chronic back pain patients Pain DOI: 10.1016/j.pain.2009.12.015

Goal setting — again!

This post is most definitely an opinion piece, because once again I’m struggling with the practicalities of goal setting with people experiencing chronic pain. There is no doubt at all that goal setting is an integral part of pain management – it’s designed to focus the input, make sure the underlying reasons for using pain management are relevant to the person, and it helps the person monitor their own progress (not to mention help the therapists measure outcomes!).

The problems are that goal setting is a really complex activity, and to make goals patient-centred rather than therapist-driven involves time, and great communication skills.

Here are some of my observations about what makes goal setting difficult, at least in my experience in pain management:

1. many patients have lost sight of the future – they are living from day to day, and can’t conceive that things might be different
2. many patients don’t seem to have ever set goals before, or at least have never used goal setting as a formal strategy in life
3. some patients view goals as ‘obligations’ and the whole concept of goal setting is clouded by past failures (think of how many times people set New Year’s Resolutions – and fail to keep them)
4. some patients really don’t know the processes they need to follow to achieve a goal – how do they work out what job to return to? how can they repair their relationship?
5. it’s so tempting to help the person set their goals but in actual fact, end up setting them for the patient, especially when the patient might have a vague idea about where they might like to progress, but doesn’t have a feel for what success in that goal area might look like.
6. it’s tempting to include ‘outcome’ goals rather than ‘actions’ the person can take

An example might help.

Say Alex has a vague idea she wants to get back to a better family life.  My next step would be to ask her ‘What does a better family life look like? What would you be doing if your family life was good?’

Hopefully Alex will have an idea of the sort of activities she might be doing with her family and that makes it quite easy to set goals – for example, if she and her family like to go on a picnic, and currently she can’t sit long enough to get to the picnic spot, and when she gets there she finds sitting on the ground really uncomfortable, then we can set goals around sitting tolerance, driving tolerance, and we can probably even think of locations or modifications to the picnic that might make it more achievable in the short term.

Where it becomes problematic is when Alex can’t think of activities she would be doing with her family and instead comes up with more complex ‘problems’ that are contributing to her sense of dissatisfaction with her family life. Maybe she says ‘I feel so irritable all the time’, or ‘they need to be nicer to me’, or ‘if I was more positive it might happen, but my pain gets in the way’. Or even more likely, it’s difficult for Alex to even think of what a good family life might look like and the answer ‘I don’t know’ comes up!

Now before you rush in and tell me how to work from there – yes, there is definitely a process to go through to help clarify behavioural outcomes for each of these goals, and yes it’s possible to help someone finally identify these behavioural outcomes – but can you see how complex the process actually is?

It involves really listening to the person, being aware of the factors contributing to their current presentation, being committed to helping the person develop personal responsibility to make changes (probably changes that involve difficult behaviours like increasing assertiveness or becoming aware of his or her own contribution to that situation), and being so very careful not to put words in their mouth.   It really does involve formulating ‘on the fly’ unless shortcuts are taken – and this is when goal setting moves from being truly patient-centred to therapist-driven.

Goal setting is so much more than simply coming up with a ‘SMART’ formula. In order for a goal to be ‘SMART’, participants need to know why it’s important to them to achieve that particular goal, what’s really achievable (when they’re pessimistic that they can make any sustainable changes), and how to persist when the payback may be quite delayed.

I don’t have the recipe yet.  I wonder whether we need to recognise that goal setting is not as simple as ‘Deciding what to work on and then doing it.’ While that might look like what is happening on the surface, and in truth that is what goal setting looks like – underneath that deceptively simple process lies a complex mass of listening, clarifying, formulating and reflecting that is no simple task.

Yes, we can set simple, concrete goals ‘for’ our patients, and it might even be an effective way to begin the process of learning how to set goals (the mechanics of setting goals) – But is it truly patient-centred? How long will a person persist with a goal that they’re doing simply to please a therapist?  And at what point will we help that person understand the contributing factors that lead to them being dissatisfied with their current situation?

Do we set goals at the beginning of therapy when the person has little idea of what is possible and even less optimism that thing can change? Do we create goals to work on that mean less but have rapid success to demonstrate that change is possible – then challenge the person to set their own, personally relevant goals?  Do we make sure the goals are actions rather than outcomes that depend on other variables?

The pondering continues – looking forward to comments from all and sundry on this really important topic!  And you can bet I’ll be scouring the information highways and byways to locate resources that might shed light on how to do effective goal setting in a practical way.

Don’t go to the internet to get good information about chronic pain

…it’s true, you know, the quality of the information about chronic pain found on the internet is poor – at least it was when this study was conducted (of course, that was before this blog got started!). ‘In December 2007, there were an estimated 1.3 billion Internet users worldwide with the usage growth increasing by 265% from 2000 to 2007’ – I don’t think that numbers will have decreased since then!
Anyway, in this study, Corcoran and colleagues developed a scoring tool to measure the quality of the material they found when searching the internet using the terms ‘chronic pain’, and using the popular search engines like Google and Yahoo. Their scoring was developed from terms from the Health on the Net code, with some modification to improve reliability.

Their search process copied the ‘typical’ searches carried out by people looking for information on the internet – that is, they used the search term ‘chronic pain’, hit the first or maybe the second page of a website and stopped there. It’s interesting to note that the patterns Corcoran and colleagues used are very typical of the patterns I see on this blog – people hit the first page and then maybe go to one other page, but then leave.

What did they find?
‘A total of 50 websites were retrieved, 10 per search engine. There were 23 websites duplicated across the search engines, leaving a total of 27 websites to be scored’

I suppose it’s a blessing that the search engines found relatively similar sites, so there doesn’t appear to be any advantage in using one search engine over another. And from the quality scoring, there wasn’t any difference in terms of quality between the different search engines. What was a bit worrying was that only two sites scoring as ‘very good’ or ‘excellent’ – and one of them is wikipedia (which as we know, is subject to frequent revision! – and may change from day-to-day…)
Just to give you an idea of the areas considered under the quality scoring:

Authorship
Qualification
Authors contact
Copyright
Reference quantity
Reference quality
Ownership
Responsibility
Purpose
Original date
Revised updates
Total score

So, the overall quality of the sites across these headings was, on the whole, not good. In fact, combining ‘technical’ aspects (ie, did the site cover a range of interventions for each pain condition, did it identify the type of pain condition it discussed and so on), and the ‘quality’ aspects as I’ve listed above could generate a score of 22. These scores were then converted to a percentage. The authors found that ‘Only 2 out of the 27 websites we evaluated earned a grand score that ranked them as either excellent or very good. The vast majority was judged to be fair or poor.’

They also found ‘About 67% of sites had no statement of purpose, 60% were unreferenced, whereas 75% of sites mentioned drug therapy in some form, and over 30% (9 sites) omitted any mention of nondrug therapies’

So, the average web surfer looking for information on chronic pain is likely to find sites about drugs, the sites probably don’t identify why they’re published, don’t have any references to support their claims, and don’t say much about nonpharmacologic strategies. And we wonder why patients turn up with a weird and wonderful selection of ‘new’ drugs to try.

As Corcoran and colleagues point out: Patients with a chronic condition are more likely to search the Internet for healthrelated information than acute patients, and 39% of patients attending a university pain center had searched specifically for pain information on the Internet. This tendency to search for information, coupled with the poor quality of information available, increases the risk of patient misinformation which can lead to conflicting emotions. …Patients search the Internet because they feel they have not been fully informed…It is of concern that the information patients find on the Internet differs from what their doctor provides.’

What bothers me is that some health providers slate the patient for heading to the internet to find out more about their condition. Maybe it’s not the patient who should be criticised, it’s the quality of the site! How many of us write adeqautely referenced material for patients? How many public hospital services take the time to generate informative web-based material for patients, resorting instead to photocopied bits of paper (and would these bits of paper score any more highly in terms of quality than what these authors found on the web?)

This year I hope to work with Health Navigator and the NZ Pain Society to produce informative web-based material that will be accessible to patients looking to self manage their health condition. Perhaps if, in New Zealand at least, we combined forces and developed really sound material as a joint project, we might be able to ensure our patients can get good information when they go to google or bing or yahoo. If you are writing and putting your information on the internet, consider the Health on the Net code of ethics, join MedBloggers – make sure your material is accurate and of good quality. Public health promotion on the internet can be something that individuals can influence!

Corcoran TB, Haigh F, Seabrook A, & Schug SA (2009). The quality of internet-sourced information for patients with chronic pain is poor. The Clinical journal of pain, 25 (7), 617-23 PMID: 19692804

Goals or actions?

Goals seem to work best when they’re important to the person, and the person has sufficient confidence that they’re going to be achieved. But…’there is many a slip betwixt cup and lip’ – while the goal might be set, actually getting there depends on many things. I wonder whether we can inadvertently slip up when we’re working to help someone set goals by focusing on outcome goals rather than process actions.

Let me clarify. Outcome goals are things like ‘sleep for 8 hours a night’. That’s what the person wants to achieve – but sleep might be disrupted by a child crying, a storm outside, or even a partner snoring! Sometimes the goal isn’t achievable not for lack of trying but because external factors intervene.

Process actions, on the other hand, are the particular actions the person does in order to work towards the desired goal. Actions are things like going to bed at a regular hour, keeping the bed for sleep and sex NOT worrying, arguing or being awake. Actions are specific behaviours the person can do, and are able to be achieved provided the person actually does them. Actions should lead toward the outcome.

I started to mull over the difference between goals and actions after reading through some of the ACT therapy manuals. In ACT, it’s important to identify the ‘why’ a particular action is being taken. The underlying reasons for an action are like a compass – they are the values that are important to the person, and guide the direction in which the person lives life. They’re never ‘completed’ or ‘achieved’, they can’t be ticked off a list and then dropped. Values can be eroded when actions that used to fulfil them stop being carried out. This can lead to a life full of actions to reduce negative experiences, but that inadvertently get in the way of actions that embody other important values.

When I look at the Stages of Change model and motivational interviewing, an important aspect of readiness to take action is to identify how important the change is, and how confident the person is to make that change.  Reviewing the importance of a change uncovers the values that the new behaviour is intended to fulfil. Without being really clear about why a new behaviour might be carried out can lead to weak engagement in the goal.  Importance is the aspect that MI identifies should be strengthened and clarified before starting to increase confidence.

Coming back to actions or goals.  If a goal is the end point and the outcome varies because of something unforeseen,  then the chances of the person becoming confident that it’s worthwhile persevering will be quite low.  After all, if my goal is to be first in a race, and I see that everyone else lining up for it has a personal best far better than mine, I’m not likely to want to even begin the race!

It’s important to distinguish between actions that the person can take, and be in control of, and goals that may not be achieved because of other things.  And the actions must tie in with underlying values or the person isn’t likely to find them important, even if they are certain they can do them.

This suggests a couple of preliminary steps before developing action plans or goals in therapy.

1. Establishing what is important, or the values that a person has might be a necessary first step in developing a therapy plan.
2. Values often tie in with roles that the person fulfils, but roles might be undertaken for different reasons – so we can’t make assumptions about why an activity is important to someone simply on the basis of our reasons for doing a similar activity.
3. Sometimes people don’t know why an action is important, and we might need to spend some time working through this with the person – and in the end, may not pursue that action at all!
4. Once the important values are identified, finding out what that value might look like in this person’s life may help to define the actions the person can take to live.
5. These actions, and working towards being able to carry out these actions then become the basis of therapy.

Actions can be specified, measured, counted, tied to place and time and person – and they’re about what this person chooses to do (or not do).  Achieving them helps the person live what they value, even though this may look different from what we might do to live that value.

I wonder if, instead of developing ‘goals’, we started to use the words ‘action plans’.  This might help us as therapists focus on things the person can do in the process of living a life aligned with personal values.  And isn’t that what we’re really trying to do in our own lives?

I hope you’ve enjoyed this tour through some goal setting literature.  If you want to keep reading, you can subscribe using the RSS feed above left, or you can bookmark and just visit.  I write most days during the working week, love comments and respond to questions!  Don’t forget you can introduce yourself via the ‘About’ page, and if you’re an occupational therapist, there is the private section just for you.  Email me for the password via the ‘About’ page.