Not just neural plasticity – health system plasticity

ResearchBlogging.orgIn chronic pain management there seems to be a pretty consistent pathway for people to finally get to interdisciplinary treatment.  First a referral from the primary care physician or GP to one or more specialist medical people – maybe an orthopaedic surgeon, or a rheumatologist, or a psychiatrist, or a neurologist.  This person will carry out investigations, get the results, make a determination that the problem is “not theirs” – and suggest some kind of management, or a referral to another kind of orthopaedic surgeon, or a rheumatologist, or a psychiatrist, or a neurologist… who will repeat the same.

Finally, after many investigations and referrals and consultations, around 3 years later, the person makes it to a chronic pain management centre.  (btw I am using those specialties as indicative only – could be other types of specialties too).

Once the person makes it to a pain management centre, there again is a kind of process that typically involves a medical assessment and possibly some intervention (injections, medications), and often a psychosocial and functional assessment.

Finally … the person begins self management. If they’re willing and not searching for another option or “cure”. (Remember, patients have been well-trained by this stage to hope there is something else out there to fix their problem completely.)

Now what if our health system became as plastic as our neurobiological system? What if, as evidence mounts, the pathways to management of chronic pain could change?  What if people with pain were given information so they could be informed about chronic pain – and then choose their own “next best step”?

In our own small way, a colleague and I developed a different pathway for people referred to our Centre.  We, like so many tertiary pain management centres, have a waiting list.  Some people can’t be seen within the Government-determined timeframe of six months and are sent back to their GP.  We decided to identify those people and invite them to participate in a new form of programme.  Here’s what we did:

  • Sent an invitation to attend a chronic pain seminar
  • We made it clear there would be no medical management and no individual treatment
  • At the seminar, we had a talk by one of our pain physician’s who pointed out the limited options available from a medical point of view, and outlined that chronic pain is a disorder of the nervous system, that there are different kinds of chronic pain, and that hurting doesn’t mean there is ongoing damage.
  • We then invited participants to consider attending a six week, two hours a week, group programme
  • The programme included all the usual pain management information and strategies but was delivered in a mini-lecture format, with a workbook that included home learning activities each week.
  • The programme was conducted by two occupational therapists and one physiotherapist, with the doctors involvement only at the seminar.

The numbers attending this pilot approach were quite low – a combination of winter, earthquakes, and the usual problems people with chronic pain have with transport, readiness to change, and self regulation.  It is, however, a different way of thinking about delivering pain management, and could be one way to help people access self management for their pain.  Because otherwise? They could very well continue the cycle of referral to one or more specialist medical people, more investigations, more inconclusive results, more decisions that the problem is “not theirs” – and more referrals… All the while that person and the person’s family are living in limbo.

It’s a little radical – changing the way we deliver health to side-step the wait to access self management. But what we tried to do is not the first, nor the only way to do this.

Davies, Quintner and colleagues (2011), in Western Australia, have published this study examining the effects of a brief, group-based self management programme, delivered to people before they see a specialist, with any ongoing consultation initiated by the patient. Wow! Now that’s different.

Their programme was only slightly different to ours: six-session program run over 2 days led by clinical psychologists, an occupational therapist, a physical therapist, and pain medicine physicians to impart their knowledge and to share skills.

Their aims were: (i) a reduced demand for individual new case outpatient appointments; (ii) reduced clinic waiting times; (iii) increased efficiency of clinic utilization with reduced unit costs; and (iv) improved patient outcomes and satisfaction.

Is this what they achieved? In their own words: preclinic group education for patients with persistent pain attending our Pain Medicine Unit reduced the overall unit cost per new patient and decreased the new to follow-up ratio of  attendances, reflecting the increased number of new patients appointed and reduced need for follow-up appointments. This resulted in significantly reduced waiting times for new patients to access the pain units while increasing the total number of individual patients seen.

Working in a large, tertiary pain management service within a large health service organisation can mean change is S L O W! Organisations just don’t change that fast, health delivery culture is conservative at best and stagnant at worst, and there still is a focus on a biomedical model in many centres.  This can get in the way of responding quickly to emerging needs, or thinking about different ways to conduct business.  Innovation is not always supported.

While our small project was too small to indicate whether it would be helpful or not, this one in Western Australia supports our approach.  And, for what it’s worth, I’m not sure that the specific clinicians delivering it, or the timeframe it was delivered in, are particularly significant.  It’s the concept of offering self management before medical management, and patient-initiated appointments for any further input.  Now that’s responding to need – a health system with plasticity!
Davies S, Quintner J, Parsons R, Parkitny L, Knight P, Forrester E, Roberts M, Graham C, Visser E, Antill T, Packer T, & Schug SA (2011). Preclinic group education sessions reduce waiting times and costs at public pain medicine units. Pain medicine (Malden, Mass.), 12 (1), 59-71 PMID: 21087401

Establishing routines and baselines: Baseline recording

One of the problems novice clinicians often complain about is that journals and research papers rarely examine or provide practical approaches to daily problems that are encountered when working with people who have chronic pain.

It can take a lot of work to locate suitable approaches to things like:

  • ways to help a person who is not accepting that a cure for chronic pain is unavailable
  • ‘motivating’ a person to engage in activities that are anticipated to increase pain
  • how to develop a baseline and establish an appropriate rate of progression
  • how to establish a daily routine

It’s tempting to think that in the absence of evidence-based approaches, the clinical skills are artistic rather than scientific, but I’m not so sure about that.  Maybe it’s more a case of lack of systematic documentation about methods used, or lack of systematic examination of the ways in which these often non-sexy and very practical strategies might be improved (subtle hint to clinical researchers here!).

Anyway, there are a few approaches that I’ve collected for developing a daily routine and baseline.  To date I don’t have publications to cite in their defense, so you’ll need to join me in exploring how and whether these work to help people with chronic pain become aware of their activity patterns.  First up: Baselines

There is good evidence that simply by recording what happens on a daily basis, positive changes can begin to occur.   This is a basic behavioural approach that has been used in eating disorders, smoking cessation, exercise, diabetes blood sugar monitoring and treatments for OCD.  It’s the principle that by having feedback available about often habitual activities, we’re more aware of them, and can begin to recognise antecedents and consequences of the behaviours in question.

The process of recording what happens, when it happens, and what comes after is often called ‘establishing a baseline’.  Clinicians unfamiliar with psychological use of baselines use the term without realising that, for behaviour change, the natural variations in behaviour need to settle into some sort of pattern in order for it to be called a ‘baseline’.

Variations in activity levels, for example, may not occur over the course of a single day or even over the course of a week.   If we don’t spend the time exploring variations over time until they’ve settled into a recognisable pattern, it can seem as if there are no patterns and fluctuations occur in a totally random way.

Once a baseline is recorded, we can start to analyse the antecedent triggers or events might be (ie the things that come before a behaviour), and the consequences of each type of behaviour.  This can help us identify the type of situation the person has trouble managing effectively (or in a way that is aligned with the person’s values in the long term).

For example, we might notice that it’s often after a period of feeling relatively comfortable that the person suddenly starts increasing his/her exercise demands.  After a few days of increased exercise, he/she might suddenly stop.  It’s important to explore the reasons the person felt it was important to increase exercising – automatic thoughts about being ‘lazy’ for feeling OK but not making the most of it? or automatic thoughts that the pain has ‘gone’ and ‘I’m cured’ so it’s time to start doing things normally again? or did the person get ‘bored’ of doing the same old thing and seek something more stimulating and blow their energy budget?

There are loads of ways to record baseline activity – diaries similar to an appointment diary; recording sheets that have several things to track such as sitting time, distance walked, thoughts about situations – and for people with high-tech backgrounds, electronic diaries that ask the person to note their activity as they go just by clicking on a button on a phone or PDA or iPad.

There is some research on whether there are differences in the quality of information collected via pen and paper through the day, or whether an ‘end of day’ record is sufficient.  I think it depends on the purpose of your assessment, and it also depends on the ‘pen-and-paper-ness’ of the person you’re working with!  In other words, it’s going to be difficult for a heavy labourer with limited access to pen and paper and low literacy to complete a detailed activity diary throughout the day, but if you’re asking a busy executive who is used to carrying a PDA or iPad around with them to do the same activity electronically, it’ll probably happen.

One simple electronic method of recording ‘up-time’ is a simple pedometer.  Taped up so it can’t be opened, it can be worn for three or four days, then opened, the total number of steps recorded, divided by the number of days, and there is a rough measure of general activity level.  This can help when developing and monitoring activity level over a longer period, such as when you’re helping someone begin a walking programme, or to maintain an even level of activity each day.  Just by recording the number of steps over a fortnight or so, with a target of maintaining the same number of steps each day, the person has a target to aim for and it can act as feedback on their overall activity level and help shape their activity behaviour.

More on ways to establish routines next time!  If you find this interesting and want to know more, or have questions, don’t forget you can post a comment below, and I’ll do my best to help.  I’m also collecting some diary and other recording formats that I’ll post in my next post.


I had a nice email from James Hardie from Moodjuice website, an NHS Scotland site developed for both health professionals and individuals to access self help resources.

For patients, the site starts by saying “Emotional problems are often the mind and body’s way of saying that something needs to be changed in our life” – I like that!  I like the way the patient area is based on practical problems like housing, childcare, hobbies and interests, meeting people, relationships and so on.

For professionals, the feature that really appeals to me is the “build your own resource” area.  This enables you to put together the most relevant handouts for the person you’re seeing – a lovely feature! Then you can print the whole lot off, and it’s a pulled-together document that looks a far cry from some of the tatty photocopied things I’ve seen in the past.

The resources in the professional area is designed to be used alongside individualised sessions, so it’s not a “plug and play” kind of site – but it does provide a great range of tools that you can use.

My one tiny criticism? The site doesn’t clearly indicate who developed it – well, it does, but it’s buried in the menu’s right away from the front page. I’d like to see that information on the front page, along with the dates the material has last been updated (just a wee point).

Anyway, here are the pages for the Chronic Pain page

and the Problem Solving Information page

and the Challenging Thoughts page


Earthquake aftermath

Dear Readers

I have had many, many expressions of concern since the earthquake struck Christchurch again on Tuesday 22 February 2011.  I’m glad to say that me and my family have escaped relatively unscathed from this traumatic event – I can’t say how badly hit my home city has been though.  While the earthquake on 4 September last year was certainly awful, this one has been so much more devastating in terms of the physical damage, not to mention the human cost in loss of life and both physical and emotional damage.  The infrastructure in Christchurch is incredibly damaged – I live in New Brighton, and we are expected to not have power for several weeks; we have no water or sewerage; the roading is terribly broken up with huge holes and smelly, sewage-contaminated liquefaction all around. 

Luckily I am well set-up at home with camping equipment.  My partner and I were away on a camping holiday for two weeks, starting on Sunday (20th).  We were in Motueka which is well north of Christchurch when I heard about the quake.  I can’t tell you how overwhelming it felt to be up there and be unable to contact my daughter who was in town, right beside one of the worst-hit areas of the city centre.  She was safe, and made contact about five hours later, but as we heard of people being killed by falling debris, I’m sure you can imagine what it was like not to be able to hear anything.  The rest of my family are fine.

I’m currently writing from my parent’s place.  Their power and water has been restored hence my being able to write! But I will go back to my home later today because the mess inside was incredible.  Every single drawer and cupboard was open with the contents hurled on the floor.  All the TV sets (we have a few!!) hurled to the ground, all the electronic equipment similarly on the ground (and we have no way to tell if they’ll ever work again with no power!).   My precious ceramics and crystal smashed – all the foodstuffs from my pantry over the floor.  Now the contents of my fridge and freezer are rotting because there is no power.  My sewing machine, iron, all my beadwork – tossed on the floor.  My piano had a shard of glass embedded in the side about 1cm deep (glad I wasn’t standing in the way of that!).  All the bookshelves and books, all the china cabinet, – ALL THE ALCOHOL!!!! all over the floor. 

How do you clean with no water? How do you get rid of the glass shards in the carpet with no power?  What do you do with the wasted food and human waste that needs to be disposed of while keeping hands clean?  No cell phones, I have a portable radio (thankfully!) but not able to make calls for most of yesterday – we now have the telephone connected, thankfully we have an old analogue phone we keep for just these emergencies!

If you haven’t yet put together an emergency kit – please do!  Consider it to be something like camping: gas cooker (portable), water containers (20litres), toilet paper and a portaloo, hand sanitiser, foodstuffs that won’t go off or don’t need refrigerating.  I’m using ice and a chilly bin to keep food cold – you can’t keep meat, milk, cheese in a warm environment.

I know I won’t be able to maintain contact much over the coming days until we get power restored.  In the meantime, please accept my thanks for the thoughts that have been pouring in.  I know there are so many people who have given time and energy to keep the people around me well and bouyed in heart and mind.  This is why people matter.

A maori saying that always means a lot to me:

He aha te mea nui?
He tangata.
He tangata.
He tangata.

What is the most important thing?  It is people, it is people, it is people. 

Believe it.

A quick (oops! long) observation on using ACT

The last few weeks and months I’ve been starting to work with people using some of the ACT approach.  For those of you who are unfamiliar with ACT, it involves

  • developing an awareness that what we think and feel is not who we are,
  • that if we are open to experiences (even negative ones) they seem to be less distressing,
  • that being present in the ‘here and now’ helps us to live fully,
  • and by being committed to doing what it takes to live out our values in the real world

we will be more able to have the life we really want.

This site gives you some great information on ACT (Thanks to Russ Harris, who wrote one of the books on ACT that I’ve found exceptionally helpful ‘Act Made Simple’ published by Harbinger Press)

Anyway, back to what I’ve been learning.  One of the major differences I’ve noticed is the pace at which I work using ACT. It’s an experiential process and to experience means being present.  So there is much less talking in the sessions I’ve been taking.  Much more emotional content – for both the person I’m working with, and myself.  There is more silence.  I’d noticed that in ‘typical’ CBT sessions I’d been skirting around intense feelings, especially sadness.  In ACT it’s so much easier to allow those precious moments to be there.  This is an incredible privilege.

And by working in this way, people are more able to access what they really value and how much they want to live a life where these incredibly important things are honoured.  To be present with a man’s sadness when he acknowledges how he has avoided showing vulnerability and disappeared into ‘the shed’ during pain flare-ups, violating his values because of the way his mind has been telling him that it’s ‘not OK to be weak in front of the kids’.  It is profoundly affecting to hear this man say how much he wants to be a good Dad, to be there for his kids – and how willing he is to experience difficult thoughts and emotions to make the commitment to act according to these values, one step at a time.

Someone yesterday said that ‘Acceptance is a process’. I couldn’t agree more.  In fact I worry when people say to me ‘Oh I’ve accepted my pain’ – I feel uneasy because living truly with pain is an ongoing process of being willing to do what it takes to live the values that are important. And that’s not a singular action.  I don’t think you can tick it off a list and say ‘Now I’ve done acceptance’ – it’s about being willing to bring the pain (or any other negative experience) with you on the journey towards the values that are important.

Because ACT is experiential, these moments have long-lasting impact on people. I caught up with someone I’d been working with some months ago who reminded me of a session in which we’d discussed what it was like for them as a child.  One of the metaphors I’d used for working with her thoughts was of dropping ‘Poohsticks‘ in the stream she’d described in her back yard.

When I was a kid, my grandparents had a big old homestead on three sections – two of the sections were orchard and were ‘over the creek’, and there was a wooden bridge built over the creek and yes, I used to play Poohsticks there.  If you don’t know Poohsticks, it involves dropping a leaf or twig on one side of the bridge then racing to the other side to see if it comes out – if you’re with someone else, then you each drop a twig and run to the other side to see who wins.  Such fun!

The image we used for thoughts was to recognise the thoughts then place them on the twig and drop them over the side of the bridge and into the creek.  The thoughts then float off down the creek, swirling and drifting as thoughts do.

This woman told me how she’d used this image when going off to sleep to not only allow her thoughts to be present and then drift away, but also to remind herself of the fun she’d had then of letting go to ‘see what happened’.  When she was a child, this was a releasing, exciting, freeing experience – but at times it was frustrating and irritating when the twigs got caught up in rocks or other debris.  She was able to be present to both these emotions when her mind was thinking thoughts about her pain – and she found this had been a turning point to starting to think about what had been important to her as a child, and how she could as an adult take action to live those things now.

Someone challenged me about whether I was prepared only to help people cope with pain, or whether I would also try to address the pain itself.  I’ve been pondering this for quite a while now and so far this is where I’ve got.

Life has both happy and sad in it.  I think one reason, paradoxically, we have so much unhappiness around us is that our culture (at least, my Western culture) promotes the idea that we must be happy to be fulfilled. When we’re disappointed or fail at something, or have a sad event happen, we end up with a double whammy of both the sad event AND the judgement that we must either pass through it quickly (lest the sadness turn into depression) or we must resist it and defend ourselves (and be energised and angry to do so).  If we don’t manage to defend or whip through it we end up with ANOTHER whammy of guilt that we’ve failed to ‘get over it’.

Does this mean that we’re ill-prepared to recognise that no emotion lasts forever? Both sadness and joy are transient – in seeking permanent happiness, but failing to retain it, are we training ourselves to fear both?  So perhaps learning that being present to the whole range of emotions allows the freedom of being able to carry on with what is important and valuable and is a good thing for everyone…

I also recognise that our fabulous brain and central nervous system contain all that makes us human. The way our nervous system works means that these psychological and experiential process have a neurobiological substrate. I don’t believe there is a ‘spirit’ or etheric ‘other’ that infuses my blood, bone, muscle and tissue.   I think that it’s far more likely that our sense of ‘spirit’ is a product of this awesome body that we are.  So I consider that by helping people learn to be ‘psychologically flexible’ I am probably changing the central nervous system.  From top down rather than bottom up.  And this might be just as powerful at changing our experience as bottom up, or outward in.  Imagine what it would be like if we could integrate both!

I’m not a hands-on therapist.  I have the privilege and responsibility of helping people sift through what is important to them and how they can get on and live these values.  In the end it’s up to them to do the things they want.  I think it’s just great that as a team working together we can help people be who they want to be.

Just doing it: Behavioural Activation
This post is sparked by a pre-print paper I read yesterday, but follows a long time cogitating about the use and value of “just doing it”.

Behavioural reactivation is a set of techniques often used for mood management.  It usually incorporates activity monitoring, assessment of life goals and values, activity scheduling, skills training and problem solving, effective communication training, relaxation training, contingency management, and managing things like avoidance.

Fellow occupational therapists will probably feel a tad superior here because these are core aspects of the ways in which occupational therapists work with people, but beware troops! The research from psychology is vast, and it’s rapidly gaining recognition as a psychological approach to reactivation.

Behavioural activation strategies are pretty old as far as rehabilitation techniques go.  In fact, the literature in psychology goes back to the 1970’s with Lewinsohn’s work on pleasant event scheduling.  Occupational therapists, I need to add, have used activities as therapy since the early 1900’s.  There have been numerous more recent studies on aspects of behavioural activation, but in the light of the flourishing CBT and cognitive therapies, the value of behavioural approaches has sometimes been lost.

While the majority of work has been studying behavioural activation in mood management, there is reason to consider its use in pain management.  Not only do the two populations often have similarly low levels of activity, there is a good deal of cross-over in terms of diagnosis (people with chronic pain often have low mood, people with low mood often have chronic pain), symptoms can be quite similar (slowed movements, lack of energy, loss of enjoyment in doing things) and even pharmacological management of certain types of low mood and chronic pain disorder.

The basic techniques of behavioural activation vary from research study to research study, and like many techniques, the specifics of each technique can vary too.  Despite this, and the current paucity of research into its use in chronic pain management, I think there is something to be gained by taking a closer look at these techniques, and considering their use in pain management – maybe even generating some good research into their application and effectiveness.

Activity monitoring – this usually involves recording daily activities in some sort of diary format.  By doing this it offers both therapist and participant a look at baseline activity levels, and to explore the relationship between activities, emotions, thoughts and aspects of wellbeing such as role fulfilment, balance in life, and the distribution of activity throughout the day.  Activity monitoring isn’t seen as a specific behavioural intervention, but rather as an assessment or monitor to support behaviour change – despite this, simply by recording activity, behaviours do change.  (Don’t believe me? Try recording your eating for a day…!)

Assessing goals and values – this involves reflecting on life roles or domains in order to identify values within each domain.  These values are then used to guide activation ‘assignments’, or the specific activities that can be used within activity scheduling.  Sounds a lot like COPM to me!  But many variants are able to be used, and it seems that the research within cognitive therapy strangely enough supports the behavioural reinforcement role that values can have within a behavioural activation approach.  Values underpin ‘important’ activities, and provide internal motivation as the activities carried out enact those values.  The ‘feel good’ factor of doing what you say you will, if you like.

Activity scheduling – now many people will know how much I loathe the word ‘pacing’ because of its connotations of ‘doing less’, or ‘doing things until just before your pain flares up’, so now I can feel quite justified in adopting the term activity scheduling because, as used in behavioural activation, ‘scheduling’ means just that.  As used by Lewinsohn, activity scheduling is intended to bring about contact with positive reinforcement in the environment.  In pain management, it also involves spreading activities out throughout the day to enable the person to maintain consistent activity patterns rather than erratic or deactivated patterns.  Pleasant event scheduling is one of the early forms of activity scheduling, and can be useful when an individual is just learning to become more active, but isn’t the only type of activity that can be scheduled.  In fact I often find it hardest to help someone develop the skill to schedule ‘time out’ for relaxation!  Activity scheduling is one sure-fire way to access automatic thoughts if you’re integrating a cognitive approach with a behavioural one too.

Skills training – strategies like developing assertive communication, relaxation training, role playing etc are included in behavioural activation because while many people can simply ‘do’ the activities, others may need support to carry them out skillfully – and in doing activities may also encounter issues with other people and may need to problem solve to enable them to carry out the activities consistently.

I couldn’t find a behavioural activation paper in chronic pain management, but I did find this paper by Dimidjian,  Hollon, Dobson, et al. (2006) that I particularly liked because of both its design, and the examination of symptom severity with treatment outcome.  It’s difficult to know whether a similar study could be carried out in pain management, especially in New Zealand, because of the complexity of the ways we manage pain (multiple clinicians, multiple medications etc).  But I can dream – and one day hope that this aspect of pain management will get the attention it deserves.

Lewinsohn, P., & Libet, J. (1972). Pleasant events, activity schedules, and depression.  Journal of Abnormal Pyschology, 79, 291-295.

Lewinsohn, P., Weinstein, M., & Alper, T. (1970). A behavioral approach to the group treatment of depressed persons: a methodological contribution.  Journal of Clinical Psychology, 4, 525-532.

Dimidjian, S., Hollon, S., Dobson, K., Schmaling, K., Kohlenberg, R., Addis, M., Gallop, R., McGlinchey, J., Markley, D., Gollan, J., Atkins, D., Dunner, D., & Jacobson, N. (2006). Randomized Trial of Behavioral Activation, Cognitive Therapy, and Antidepressant Medication in the Acute Treatment of Adults With Major Depression. Journal of Consulting and Clinical Psychology, 74 (4), 658-670 DOI: 10.1037/0022-006X.74.4.658

Why do I spend so much energy & time on chronic pain?

Someone said recently that they’d like a job where they come in, do the job, then go home and have a life.  Later that day I spent an hour or so after work talking to another clinician who, like me, has occasionally been accused of ‘not having a life’ – oh and breaking a few rules to get a good outcome for someone.  We both thought that in health care, at least in New Zealand, there are more people who live and breathe their passion for their work than those who don’t, and that our work is more enjoyable and more exciting than when we’ve ever been working in a job that needs less energy.  I can also say that I’d rather be seen by someone who loves their job than someone who is simply waiting to go home…

There’s a saying I put on the whiteboard behind my door in my office: it says ‘Passion puts perfection in the job’.  That makes a whole lot of sense to me.  And as I ponder and write this post I realise that for many years I’ve held to the idea that if you choose work that ignites something deep inside, you’ll not only feel like you have many choices for your job, but you’ll also thoroughly enjoy your day and will have energy left over for the other things that make up a rich life.

I’m fortunate I know in that I have had advantages in my life – I can read well, I’m endlessly curious, and I can’t recall being bored with nothing to do ever!  This doesn’t mean I have lead a charmed life, I’ve had chronic mood problems, postconcussion syndrome, fibromyalgia and gestational diabetes now morphing into type II diabetes (despite being average weight!).  I’ve also had some relationships fall apart, some work situations not work out, and some trauma and losses I don’t easily talk about.  I think I’ve had a pretty normal range of ups and downs.

But what I do have in bucketloads is the motivation to want to learn more, find out things, to feel moved and have emotions and care and get annoyed on behalf of and LIVE a life.

So when someone asked me what keeps me motivated to write this blog, to work in chronic pain, to read about chronic pain – and to care about whether people with chronic pain get effective therapy, I found it quite hard to put my finger on what it really is that keeps me so fired up.

It’s not just intellectual curiousity, although chronic pain is such a complex and multifaceted area where philosophy, biology, psychology, sociology and things like consciousness, macro vs micro views of humanity, politics and science all intersect one another.  And it’s not that there is an endless supply of patients to see who are all different with varying permuatations of the problems that chronic pain can bring.  It’s also not because of a desire to be seen to push a message that everyone wants to hear, to be popular, to make money out of it.  BTW I don’t get paid to write this blog, and what I have to say about chronic pain management doesn’t appeal to people all the time (wouldn’t you prefer to be told your pain will disappear or be ‘fixed’ rather than my somewhat grim message that ‘if it’s to be, it’s up to me’ – for life!).

It think it’s all of that AND that as a group, people with chronic pain are often misheard, passed from one person to another often with a shrug of the shoulders and a ‘I don’t know what to do, you’re really too hard for me and maybe all you need to do is pull yourself together’ sort of look!  People with chronic pain see endless specialists, are often viewed as ‘the back’ or ‘the foot’ or whatever body part is sore when pain invades every aspect of being human.

Why wouldn’t I want to work in a field where I have the privilege of being a guide or facilitator so the person I’m working with gets to live a life that embodies their most cherished values?
AND a field where I can feed my own passionate curiousity!

The world is full of people who will go about their whole lives and not actually LIVE one day.

I do not intend to be one of them.

I’m reminded of one of my favourite poet’s poem – Hone Tuwhare

Child coming home in the rain from the store

When I see you pause
make talk dawdle-walk
on the back road to your house
your house overlooking
the timber mill and timber yard
I know you stop only to talk
not to the cruel metalled road
but to a stone    a solitary stone
sharp-edged with flat shiny

Through your mind’s eye know
the feel of washed leaves
made green again: tall rain -shafts
drifting: wind wincing
a water-filled pothole

And I child-delighting share
your long walk you talk
to things     and for things along
the bent road where impatiently
others wait for the damp bread
you bring

There is something about talking the time to appreciate the small things that transports me from the irritations and frustrations of stifling rules and procedures that fence and constrain rather than allow those contained to feel protected.

Enough rambling, I hope you get the picture that working as I do is a joy and a treasure and releases energy and I can go on and enjoy other things in my life just as passionately. Except for vacuum cleaning, or tidying (I do not enjoy that!)

…but I’m not ready to stop looking for a cure
People come to pain management with a wide range of attitudes and expectations.  Over the past few months I’ve been reviewing the ‘goals’ that people write in their pre-appointment psychometric questionnaires, and almost without exception people write ‘Reduce my pain’ or ‘Fix my pain’.  While they’ll also write down ‘do more’, ‘return to work’, ‘get a life back’ – these things are all ‘provided that…my pain is gone’.

I spent a half hour talking to a man yesterday who has spent seven years searching for firstly ‘the reason’ for his pain, and now ‘the cure’ for his pain.  He told me he’s not yet ready to accept that his pain might be permanent.  His life over the past seven years has consisted of appointment after appointment with specialists, numerous scans and other investigations, even more medications and medication trials, surgery at least twice, and he still says to me ‘I’m not ready to stop looking for a cure’ – and the killer for me is the next phrase ‘so I can have my life back’.

Now I’m not criticising him, I feel really saddened for him and I wish there was a way to show him his future if nothing changes – because the life he’s living right now is his life, and it’s nothing like what he says he wants in his life.  Everything has been put on hold over the past seven years, his job, his family, his intentions to travel, to have a social life, to have choices about what he wants in his life.

I can understand the desire to know what is going on and why chronic pain is.  It’s a normal attitude to think that if a diagnosis is made, someone somewhere will be able to ‘do something’.  Or is it?  Where are the cures for so many chronic diseases? Diseases like diabetes, asthma, chronic obstructive airways disease, rheumatoid arthritis, osteoarthritis.  None of these diseases have a cure per se – all of them are simply ‘managed’.  So knowing what the diagnosis is hardly leads to ‘cure’ except in a few cases.

Knowing the diagnosis may satisfy the desire to know that ‘it’s real’ – but doesn’t remove the emotional burden of having a disease.  I don’t think knowing that you have Parkinsons’ removes the burden of knowing that your physical movements are slowly deteriorating.  Knowing that you have Multiple Sclerosis doesn’t lessen that emotional sting of knowing that your life will progressively become slower and more difficult.

And in each of these cases there is a clear range of management options that are usually employed that reduce the physical demands of the disease, and once diagnosed, most doctors will then stop searching for ‘another cure’.

Not so for chronic pain.  It seems that in the case of chronic pain, it’s often the health professionals who drive the search for ‘another diagnosis’ to ‘find out the cause’ of the pain – as if we can’t quite accept that the nervous system can have its own dysfunction in just the same way as another body system.  And once diagnosed, the management of chronic pain is much less systematic than for many other disorders, so it’s not unknown for people to be given several different ways of managing from a huge load of multiple medications to the minimalist approach of very few and lots of self management.

What should I do as a health professional working in this field when I talk with someone like the man above?

I’m not sure about a ‘rule’, but this is what I actually did do.

  1. I empathised with his distress and worries about his pain
  2. I empathised with his frustration about trying to find the cause and cure for his pain
  3. I asked about and listened to his concerns
  4. I asked about what was important to him and what his life might look like if he was well
  5. I pointed out, gently, the discrepancy between what he wanted and what he had
  6. I asked him whether his search was working for him
  7. I asked him where this left him
  8. With his permission I gave him information about self management and what it might offer
  9. I asked him what he thought was his next best step
  10. I respected his choice to keep looking for his cure but I kept the door open by saying that we were here for him when he’s ready to start to put back the things he’s missing in his life right now

I don’t know whether I’ll see him again, although I said I’d give him a call in April.  What I hope I offered him was the chance to feel heard, to look at the discrepancy between what he had in his life and what he wanted, and to respect his decision but let him know we’re still there.  I really hope he does find his cure although I’m not confident about it.  I do hope we see him again if he doesn’t’get fixed’.

Accepting chronic pain doesn’t mean giving up, but it does mean putting back into life what is important.  In the pursuit of something elusive, we can lose sight of what we already have that is good, right and gives life meaning.

Clarke KA, & Iphofen R (2007). Accepting pain management or seeking pain cure: an exploration of patients’ attitudes to chronic pain. Pain management nursing : official journal of the American Society of Pain Management Nurses, 8 (2), 102-10 PMID: 17544130

I’m so tired of coping: Self regulation, executive functions and chronic pain
Changes take energy – that’s nothing new, I know, but perhaps something as clinicians we might forget when we work with people who have chronic pain. I was thinking about this as I’ve had a week away from regular blogging so I could focus on writing and some self care.  Things are busy and as we enter the run up to Christmas, not likely to slow down any time soon – and yes, this takes energy!

Adjusting to living with a chronic health problem is demanding, it’s complex and requires people to reflect on what is important to them, how to achieve important activities all the while maintaining a sense of self.  Self regulation is a term used to refer to the ability to alter thoughts, feelings, and behaviors.  In chronic pain ‘[the] demands cross biopsychosocial boundaries and include managing the pain itself (e.g., by redirecting attention or exercising), negotiating close relationships that can be affected by the limitations associated with chronic pain, suppressing ruminative thoughts about pain, and regulating moods such as depression and anxiety that are commonly comorbid
with pain.’
(Solberg, Roach & Segerstrom, 2009).

I’m not sure that we generally acknowledge the fatiguing aspects of all this adjustment – and I reflect myself on how I respond when someone says they’re tired, I usually start to think about whether the person might be depressed, what their sleep might be like and so on, but rarely ponder the extent to which adjustment and self regulation might be a finite resource that requires replenishment from time to time.

Solberg, Roach and Segerstrom state that ‘Executive functions, largely orchestrated by the prefrontal cortex (PFC), are “a collection of interrelated abilities that enables people to modify their thoughts and actions”’. Executive functions vary both in terms of general ability and specific ability to regulate thoughts and actions. Use of a portion of the brain to self regulate (eg suppress thoughts or emotions) reduces the ability to carry out other cognitive functions such as reasoning. ‘Acts of self-regulation (e.g., attention control, emotion control) led to poorer higher order intellectual performance on tasks involving logic and reasoning, cognitive exploration, and reading comprehension.’

It’s already recognised that some chronic pain conditions such as fibromyalgia and temporomandibular disorder not only present with pain, but also affect cognition, emotions and physiological functioning.  People commonly report being fatigued, having ‘fibro fog’, and present with a range of other problems including disruption to sleep.  The authors of this paper point out that many of the same brain regions that are affected in chronic pain are also associated with executive function such as cortical blood flow to thalamus, the caudate nucleus, and the anterior cingulate cortex and gyrus.  Whether these changes are cause or effect matters less than to recognise that they are present and functionally suggest that people with chronic pain may also have trouble with self regulation.

Importantly, self regulation can be developed.  Active coping in chronic pain is almost all about self regulation – setting goals, persisting in certain tasks, halting others, managing emotions and so on.  The ability to sustain these activities varies considerably and I’m sure we’ve all encountered people who have managed well for a time, but lapsed or had a major set-back due to another significant event.  Important to remember is that ‘if patients with chronic pain are already experiencing self-regulatory fatigue, they have little strength to initiate or maintain such activities, regardless of their potential benefits.’

Maybe one part of the success of graded reactivation is not so much the habituating to pain, nor even the ‘return to fitness’ that is now being challenged (just how fit are the therapists compared with the participants who have chronic pain?!), but because it doesn’t tax the already fatigued self-regulatory resources.

The paper I’ve been quoting from provides a helpful, albeit brief, review of self regulation, executive functions and chronic pain. Recommended reading if you haven’t considered the area before, and also because it summarises a good deal of the neurophysiological information and self regulatory literature and applies it directly to the areas we are concerned with in chronic pain management.

This week I’ll be focusing on self regulation – there’s much more to learn! I think it may well be a significant part of resilience, and therefore worth developing not simply in people with chronic pain, but maybe in ourselves as clinicians. Who knows, some of us might be both!

Solberg Nes, L., Roach, A., & Segerstrom, S. (2009). Executive Functions, Self-Regulation, and Chronic Pain: A Review Annals of Behavioral Medicine, 37 (2), 173-183 DOI: 10.1007/s12160-009-9096-5