pain-related anxiety and avoidance

Graded exposure in the real world

Well, not exactly the real world – yet – just the clinic.

A man I’m working with is very worried about his back.  Some years ago he had a discectomy and his surgeon told him he needed to be ‘very careful’ with his back – and so he has.  No bending, twisting, lifting for this man!  He’s given up some of his favourite things like fishing and whitebaiting and even golf because of this worry, although when I talk things through with him he’s not exactly sure what might happen if he ‘disobeyed’.

Let’s call him Matt for wont of a better name (and yes, as usual, details have been changed to ensure confidentiality), and he’s a fairly ‘blokey’ man who loved his fishing, diving, and taking off for days in his converted bus with his partner.  He’s just recently hurt his knee in a fall, and although the knee has been slow to recover, he’s now on the mend – but his back pain has become much worse.

Matt’s previous back problem involved a large disc prolapse, compression of the nerve root, and radicular pain radiating down his left leg.  After his surgery, the leg pain completely went but as often happens, he was left with slight low back pain.  Matt told me he could usually manage this and it didn’t bother him because he was ‘very careful’ with his back.  When he said ‘very careful’ what he meant was he’d stopped all those things he’d enjoyed and when he got pain he immediately thought of what his surgeon had said, and worried that maybe his back was ‘under stress’ and he might have a recurrence of that pain that he had experienced before.

While his knee is settling down, Matt’s back pain has increased – and to cap it off, he’s now got pain in all his joints.  Matt’s not one to visit the doctor unless he ‘has’ to, and he hasn’t mentioned this widespread pain to his doctor – and his fear was that this pain ‘must be’ rheumatoid arthritis.  He doesn’t have any RA in his family, but his understanding was that RA is something that affects every joint, it’s progressive and certain to mean he will be crippled (his words).

I guess we could say that Matt is a man with health anxiety, and more specifically, pain anxiety – and kinesiophobia.

Matt’s worry about his back pain has lead him to see his GP to get an MRI to ‘find the cause’ of his increased pain, and to ‘get it fixed’.  Unfortunately, even though he hasn’t any specific signs to suggest the need for an MRI, he’s been referred for one (see my previous posts on ‘is reassurance reassuring’!).

I spent a while discussing the possible outcomes of the MRI with Matt.  Maybe there will be a clear anatomical change that will account for his back pain and a clear surgical solution.  Maybe there will be a slight anatomical change but no surgical solution.  Maybe there will be no anatomical change at all.  What will he do?

I should add at this stage that Matt and I spent quite a while with one of our doctors looking at his previous surgery and the possible explanations for his increased back pain.  Even though he had a clear explanation, his questions were answered and he has had a good response to medication suggesting that the pain is most likely due to central sensitisation, Matt is not convinced he should change his practice of avoiding movements involving his back.

At our session, Matt and I discussed the effect of his avoidance strategy.  He’s aware that it’s not working for him, and that it means he has given up many of the things he really enjoys – but at the same time, to him the risk of ‘doing damage’ is far too high. So I suggested to him that we go through a set of photographs (the PHODA) to look at exactly which movements and activities he felt he shouldn’t do – and would avoid.

Together we sorted through the 100 photographs of people doing everyday activities.  He sorted them into two piles – one that he would do reasonably happily, and the other of things he wouldn’t do.  Sixty seven of the photographs were sorted into the pile of things he wouldn’t do. Things like carrying a load of washing, picking up a planter pot, pushing a wheelbarrow, twisting to reach for a book, reaching above his head to retrieve a box from the top shelf…

Things he would do included some activities that looked very similar to the ones he wouldn’t do. For example, he wouldn’t bend over to pick up a pair of shoes from the floor – but he would reach across a bed to pull the duvet up.  He wouldn’t reach across a table to pick up a book, but he would reach forward to prune a rosebush.  In both of these cases the postures he adopted were the same but for Matt, there were clear ‘reasons’ one movement was fine, and another was not.

He and I have agreed to develop a hierarchy of these avoided activities. We’ll put the photographs in order from least bothersome to most avoided.  And we’ve agreed to work through each activity and firstly identify what it is about the activity that concerns Matt.  Then I’ll show him how I’d do the movement, and he will attempt to do it the same way.  I’ll ask him to rate his level of concern out of 10, and to rate the likelihood that what he fears will happen out of 10.  Then he’ll do the movement, and repeat the measures.

What we’re trying to do is test his hypothesis that these movements are going to do what he fears. It seems that although he’s concerned that he might ‘damage’ his back, the cue that he uses is his pain level – and he is not happy about fluctuations in his pain, both because it might mean his back is ‘getting worse’, but also because he is fearful that he won’t be able to ‘handle’ the pain (remember he’s usually a pretty staunch and blokey man).  He’s got a few theories about how his back works, but readily acknowledges that he doesn’t really know all that much about his spine, just what his surgeon has told him.

I’ll keep you updated on Matt’s progress as we work through this exposure activity.  I think this is a great opportunity to help Matt learn both about his body, and that he can cope with fluctuations of pain.  I’ll be listening carefully to what he thinks is going on, so I can set up ‘experiments’ that we can do together (at least initially) to test out whether his hypothesis is correct.  Matt seems satisfied that I’ll be ‘doing the worrying’ for him, and that he’ll be doing the activities in our environment.  My plan is that once we’ve managed it in the clinic, he will feel confident enough to practice the same activity at home.

For some more details on the graded exposure process and the theory behind it, here are several papers:

Wicksell, Rikard K; Ahlqvist, Josefin; Bring, Annika; Melin, Lennart; Olsson, Gunnar L. Can exposure and acceptance strategies improve functioning and life satisfaction in people with chronic pain and whiplash-associated disorders (WAD)? A randomized controlled trial. Cognitive Behaviour Therapy. Vol.37(3), Sep 2008, pp. 1-14.

Linton, Steven J; Boersma, Katja; Jansson, Markus; Overmeer, Thomas; Lindblom, Karin; Vlaeyen, Johan W. S. A randomized controlled trial of exposure in vivo for patients with spinal pain reporting fear of work-related activities. European Journal of Pain. Vol.12(6), Aug 2008, pp. 722-730.
Vlaeyen, Johan W. S; de Jong, Jeroen; Sieben, Judith; Crombez, Geert. Graded exposure in vivo for pain-related fear. Turk, Dennis C [Ed]; Gatchel, Robert J [Ed]. (2002). Psychological approaches to pain management: A practitioner’s handbook (2nd ed.). (pp. 210-233). xviii, 590 pp. New York, NY, US: Guilford Press; US.

Pacing and avoidance in fibromyalgia

The recent emergence of study into ‘pacing’ or activity regulation in pain management is a welcome addition to our knowledge of this coping strategy. Although pacing has been described and included in many self-help books as well as clinical texts as an effective strategy for people with chronic pain to use, the research base for its use is pretty skinny (see Gill and Brown, 2009). McCracken and Samuels (2007) found that increased use of pacing was associated with higher disability and less acceptance, while Nielson and Jensen (2004) found that it was associated with lower disability in people with fibromyalgia.

The study I’m looking at today, by Karsdorp and Vlaeyen, looked in whether pacing specifically was different from ‘other behavioural strategies assessed with the Chronic Pain Coping Inventory (CPCI), such as guarding, resting, asking for assistance, relaxation, task persistence, exercise/stretch, seeking social support, and coping self-statements.’ The second part of this study looks more closely at whether ‘pacing was associated with physical disability when controlling for pain catastrophizing, pain severity and the other behavioural strategies as measured with CPCI.’

The methodology was pretty simple: a random sample of around 400 patients from the Dutch Fibromyalgia Association responded to being sent a set of questionnaires, a response rate of 68%. 388 women; mean age = 47.58 years, SD = 10.18, range 18–75 years. The mean duration of pain was 160 months (SD = 116.79). Thirty-four percent of the patients had a job and 39% of the patients received income from a disability income insurance.

The questionnaires used were the Chronic Pain Coping Inventory (Jensen, Turner, Romano & Strom, 1995). CPCI comprises 70 items measuring 9 behavioural strategies: Guarding (9 items), Resting (7 items), Asking for Assistance (4 items) , Relaxation (7 items), Task Persistence (6 items), Exercise/Stretch (12 items), Seeking Social Support (8 items), Coping Self-statements (11 items), and Pacing (6 items).
Pain intensity was measured using VAS, catastrophising was measured using the Pain Catastrophising Questionnaire (Sullivan, Bishop & Pivik, 1995), functioning was measured using a fibromyalgia specific Fibromyalgia Impact Questionnaire (FIQ-PH) (Burckhardt, Clark & Bennett, 1991), and the Pain Disability Index (Pollard, 1984) were used. Note: these were translated into Dutch for this study.

Thank goodness for statistics! Multiple regression analysis was undertaken – two hierarchical regression analyses were conducted with physical functioning or disability as the dependent variables. The first step included gender, age, and education, pain intensity, and pain catastrophizing. At the second and third step, the 8 CPCI subscales and the pacing subscale were entered, respectively.

What did they find?
At step one in the regression analysis, the demographic variables, pain intensity, and pain catastrophizing explained a significant amount of variance in physical functioning.

Older patients, patients with more severe pain, and patients who tended to catastrophize about pain reported greater physical impairment and more disability.

At step two, the 8 CPCI subscales without the pacing scale reduced the effect of age and pain catastrophizing to zero and significantly explained an additional amount of variance in physical functioning.

At step 3, the pacing subscale did not explain a significant additional amount of variance in physical functioning, leaving, in the final model, patients who avoided physical activities and asked for assistance to manage their pain reported greater physical impairment and more disability, even when controlling for demographic variables, pain intensity, pain catastrophizing and the other behavioural strategies.

So, what does this mean?
Remember, the first question was whether pacing forms a separate scale within the Chronic Pain Coping Inventory, and it seems to – at least in this Dutch version of the CPCI. Pacing is different from guarding, asking for help, avoiding and so on.

The second question was whether pacing was associated with physical disability when controlling for pain catastrophizing, pain severity and the other behavioural strategies as measured with CPCI. The reason for testing this hypothesis was to ascertain whether ‘activity pacing is an adaptive behavioural strategy that could be taught in pain management programs to improve adjustment in FM.’

Zero-order correlations revealed that patients using more pacing strategies reported greater physical impairment and more disability as opposed to less physical disability, so perhaps not such a great strategy to use – but wait: regression analysis demonstrated that pacing did not significantly contribute to physical functioning and disability over and above demographic variables, pain severity, pain catastrophizing and other behavioural strategies reported in chronic pain.

This means that the present study suggests that helping patients to increase pacing strategies in pain management programs may not be a key element in diminishing disability in FM. The authors suggest that the context in which pacing is used may determine whether it’s adaptive or not. Some patients may use pacing as an avoidance strategy, while others may use it, along with graded activity, to increase their ability over time.

The two strongest predictors of disability in this study were guarding and asking for assistance, which are likely to be dysfunctional strategies in FM. This shouldn’t be surprising, as these findings fit with the fear-avoidance model of disability.

Now, some caveats when interpreting this study. Don’t ever confuse correlation with causation – this is a correlational study, so there could very well be some intermediate factor that moderates the effect of activity pacing and disability. The authors quite rightly identify this. Longitudinal and experimental designs are needed to explore the relationship between activity pacing and disability in much more detail. Observational studies are needed to counter the self-report nature of the study instruments in this study. (Of course, we know how difficult observational studies are to carry out!).

Nevertheless, the authors suggest (and I agree based on my experience) pain management programs targeting activity pacing or behavioural strategies in general may not be effective in FM. Instead, therapeutic interventions based on fear-avoidance models specifically targeting paradoxical safety behaviours are likely to be useful in FM. I’m not sure we do exposure therapy as well as we might – and I’m certainly not sure we identify safety behaviours well at all. Perhaps something to explore in the future?

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Karsdorp, P., & Vlaeyen, J. (2009). Active avoidance but not activity pacing is associated with disability in fibromyalgia Pain DOI: 10.1016/j.pain.2009.07.019

J.R. Gill and C.A.A. Brown, Structured review of the evidence for pacing as a chronic pain intervention, Eur J Pain 13 (2009), pp. 214–216.

L.M. McCracken and V.M. Samuel, The role of avoidance, pacing, and other activity patterns in chronic pain, Pain 130 (2007), pp. 119–125.

W.R. Nielson and M.P. Jensen, Relationship between changes in coping and treatment outcome in patients with Fibromyalgia Syndrome, Pain 109 (2004), pp. 233–241.

Safety behaviours – do they maintain kinesiophobia?
Let me start by saying this post is conjecture, but based both on observing patients, and after reading an interesting paper on ‘subtle avoidance and safety behaviours relevant to social anxiety’.

First some definitions: I hope you’re all familiar with the term ‘kinesiophobia’, or ‘fear of movement’ – it’s the fear and avoidance of movements that an individual believes will hurt or harm them.

Safety behaviours: are strategies that may be used to reduce the anxiety of carrying out a behaviour – and are usually ‘logically’ linked to the underlying belief about the movement.  For example, using ‘safe lifting techniques’ can be a safety behaviour in someone who is fearful of bending; taking a deep breath in and breathing out prior to doing a movement may also be a safety behaviour, as can moving very slowly while carrying out the movement.

The reason safety behaviours are important in the treatment of phobia is that they are ‘subtle forms of avoidance that are employed during feared movements’, and as such the prevent the ‘unambiguous disconfirmation of unrealistic beliefs about danger’  (note that I’ve inserted the words ‘movements’ and ‘danger’ in these quotes that I’ve drawn from the paper by Cuming, Rapee, Kemp, Abbott, Peters and Gaston, 2009).

Let’s unpack that sentence: in a phobia, a person holds an unconfirmed and (usually) unrealistic belief that some sort of disaster will occur if they encounter the feared stimulus.  In kinesiophobia, this belief can be complicated by the degree of meaning that people hold about experiencing pain – not only are individuals probably correct in their belief that if they move they may experience pain, but from childhood we have been trained to avoid experiencing pain because it is equal to harm or damage.  The problem for people with chronic pain who also have kinesiophobia is that the movements may exacerbate pain but the pain they experience no longer represents harm or damage.  But it doesn’t feel like this!

As a result, people with high levels of fear and avoidance will avoid movements that they believe will cause pain in the belief that some sort of harm will befall them – the harm may be their belief that some sort of damage will occur in their bodies (their backs will ‘fall apart’ or ‘go out’), or it may be much more subtle, perhaps a belief that ‘I can’t cope if the pain increases’, or ‘I will have an awful day and I won’t sleep if my pain goes up’.

As in social phobia, safety behaviours in kinesiophobia prevent the person from experiencing or verifying that the feared outcome will not occur.  The person may instead believe that the awful thing hasn’t occurred because they have used a protective safety behaviour – so they still believe that the movement will cause harm (think of ‘safe lifting’ techniques supposedly reducing the risk of back ‘injury’); or safety behaviours may actually increase the likelihood of experiencing the negative outcome – by tensing and moving very carefully, the person may increase muscle tension and inefficient movement patterns, thereby increasing pain after the movement is complete.  By carrying out safety behaviours, the person never confronts his or her fear that something horrible will inevitably occur – either increased pain that they ‘can’t cope with’, or ‘damage’.

The paper I read that triggered my pondering today suggests that subtle avoidance and safety behaviours are prevalent in individuals with social anxiety.  The subtle behaviours allow the person to remain in a feared social situation – but only if they carry out these ‘special’ behaviours, for example speaking very slowly or quietly, mentally rehearsing what to say, holding onto a utensil very tightly causing it to shake and so on.  The problem is, these behaviours may make the negative outcome more likely (people will get frustrated listening to someone who speaks very slowly or hesitantly!), and they therefore maintain the fear that ‘people will ignore me and I’ll make a fool of myself’.

Can you see the similarities between these behaviours and maybe what we ask patients to do while getting people to carry out movements?

Maybe we ask people to review their footing and posture before they do a manual handling task – suggesting, in effect, that if they do the task ‘this way’ they will be ‘safe’.

Maybe we encourage patients to breathe in a special way, or pre-plan their movements or ‘wait until you’re warmed up’ before doing movements.

Maybe we get them to do special stretches or breathing exercises at certain times of the day, maybe even ask them to rate their pain and if they report any increase in pain, we reduce the demands on them, or try to identify ‘what has caused the pain’ so we can modify the way they do the activity.

Some patients use medication as a way to avoid experiencing fluctuations in pain – experiencing relief almost immediately after swallowing a tablet and way before it can have had a pharmacologic action.  Some patients use splints or hotties or rubs.

What are we reinforcing in our patients when we encourage them to notice their pain, report on their pain, medicate their pain – maybe we’re actually reinforcing their fear that something awful will happen if they experience a fluctuation in their pain?  Or maybe we are fearful of seeing someone experiencing pain?

The authors of this paper describe the development of a self-report measure of safety behaviours – maybe it’s time we started to develop something similar for people experiencing kinesiophobia.  Of course, in social phobia, and indeed in most phobia, the fear is out of proportion to the threat, the avoidance interferes with daily life, and most phobia are recognised as being ‘unrealistic’ .  I wonder if we can say the same about pain-related fear and avoidance – or do we have mixed feelings about how OK it is for people to experience pain?

I think our job is to help people reduce their level of suffering, to minimise the interference that pain has on their lives, and to encourage full participation in life.  I’m not so sure that we always do this when we encourage people to avoid experiencing pain by medicating or avoiding movements or carrying out movements in special ways.  What do you think?

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Cuming, S., Rapee, R., Kemp, N., Abbott, M., Peters, L., & Gaston, J. (2009). A self-report measure of subtle avoidance and safety behaviors relevant to social anxiety: Development and psychometric properties Journal of Anxiety Disorders DOI: 10.1016/j.janxdis.2009.05.002

One size does not fit all – people with pain are not clones

On a similar theme from my post ‘Pain management can’t be cloned’, I want to post about the need to tailor therapy to suit the person.  Pain management does not follow a recipe – principles yes, protocols … not quite so sure.

What do I mean by this?  Well let’s take two people with back pain that is making it difficult for them to work.  Both have trouble bending forward, sitting, walking and sleeping.  Both are male, mid-30’s, hard workers in manual labouring jobs.  Same date of onset, same reported pain intensity.   Neither man responding very well to NSAIDs with gastric problems and now taking regular paracetamol but no other medications.  ‘Objective’ measures of forward flexion, straight leg raising, lower limb strength are only slightly limited, and neurological testing is normal, and both present with paravertebral spasm, localised tenderness to palpation over L4/5, and localised pain over the central low back.  There are no changes on X-ray, and MRI/CT is not indicated.

Robbie is a surfer in his spare time, hasn’t been surfing recently but has been swimming, and until now had back pain intermittently but had never stopped working.  He comes from a family where pain has been ‘toughed out’, and he expects that this episode will eventually settle too.   He is surprised that his back pain hasn’t settled, but is carrying on with regular walking and intends to return to work as soon as he is able.  His main concern is that he finds during exacerbations of his pain, he has trouble settling his body down – his breathing changes, he feels nauseous, giddy, his heart rate rapidly increases, he becomes sweaty and quite distressed.  He has difficulty getting off to sleep and his sleep is interrupted.  He is typically active when his pain is settled, but then experiences a long period of intense discomfort (boom and bust pattern of activity).  He is quite careful with his movements, and in particular takes care not to move into certain positions that he has found have been associated with pain.

Andrew is a motorcyclist and is continuing with recreational motorcycling despite having had what he calls ‘grumbling’ back pain for most of his adult life.  His back pain hasn’t really settled completely, and this episode has got him quite worried because it is more intense than ever before.  His family are becoming quite irritated with the ongoing saga of his back – and want him to ‘get on with it’.  He has stopped walking, going to the gym and doesn’t like swimming.  He stays fit by using an exercycle, but doesn’t enjoy it.  His main concern is his lack of energy, and his increasing need for sleep. He does have trouble getting off to sleep on occasion, and goes to bed quite early because he is fatigued, but wakes regularly through the night and about an hour earlier than he would really like to.  He has even had an occasional afternoon nap.  He doesn’t really avoid movements that increase his pain – but has reduced his overall activity level because of his fatigue.  He notices that he has gained weight because he is not doing very much.

Sound familiar?  Clients like both of these men often attend pain management centres – and often they receive exactly the same treatment.  Lots of ‘core stability’, fitness training, daily scheduling, relaxation training and a graded return to work programme.   And these probably help in some way… but let’s take a closer look at what might be a more targeted and individualised strategy.

Robbie may have pain-related anxiety and avoidance. He describes increased physiological arousal and has learned that certain movements are best avoided.  He’s not deactivated or unfit – his cardiovascular fitness as measured by a 3-minute step test has remained high.  Treatment should probably focus on helping him develop skills to manage his physiological arousal (eg biofeedback, relaxation training, cognitive behavioural therapy to help identify automatic thoughts and replace with more helpful thoughts and behaviours), alongside graded exposure to those movements and activities that he finds concerning.   Sleep management would focus on strategies to improve sleep hygiene, reduction of unhelpful rumination as he goes off to sleep, and possibly sleep restriction.  A graded return to work would have a greater chance of success if he develops strategies to work to quota, and addresses his automatic thoughts and beliefs about needing to get everything done very fast (and very well).  He can probably return to work quite quickly once he has overcome his concerns about activities such as lifting and bending.

Andrew on the other hand, has lost fitness and lacks energy to increase his activity level.  He is assessed as being depressed and is treated with a combination of both antidepressant medication and cognitive therapy for this.  His family need to be brought into his treatment and it would help if he developed ways of communicating with them.  He needs to develop a daily activity plan with a schedule for both active and pleasurable activities.  Because he normally attends the gym and walks, his programme needs to be developed around this – swimming or hydrotherapy probably won’t be helpful.  He may need some help with ‘efficient’ ways for relaxing through the day, but doesn’t have the need for specific methods to reduce physiological arousal that Robbie does.  He may need to have a similar programme of sleep hygiene and sleep restriction, but because worry isn’t a problem for him, he may not need to focus on ways to address this before sleep.  His ‘pacing’ will need to focus on gradual increases in activity – and increases set by his fitness level.  Graded return to work will need to be progressed according to his cardiovascular fitness and fatigue/depression levels rather than avoided activities.

In effect, the two men have quite different treatment programmes despite experiencing very similar functional limitations.   This is why it’s so important to assess their presentation very carefully and develop hypotheses about what might be perpetuating their problems.  Any ‘protocol’ should ensure that the following principles are followed:

  • good assessment
  • generation of a number of competing hypotheses about cause and maintenance of the problems
  • interventions designed to confirm or disconfirm the hypotheses or based on a confirmed hypothesis
  • pre and post as well as follow-up outcome measures

A protocol may be less effective when it specifies the content of each session or the processes used to facilitate learning.  People learn at different rates, have different learning styles, varying automatic thoughts and underlying beliefs and attitudes, and live in different environments.

Health professionals have skills in applying concepts to specific situations.  This is why people are professionals, not computers or robots.

Sorry I don’t have any references for this post – unusual for me!  If you’ve got some – or any comments – let me know! And if you’ve been provoked by this post and don’t want to miss any others – use the RSS feed above, and subscribe!