Making the first contact

How do we begin working with someone who is asking for help with their persistent pain? In this post I’ll describe some of the considerations I have when I begin, because as Benedetti points out, the “meet the therapist moment” is one of the most potent times in the therapeutic ritual (Benedetti, 2011). It’s the time when the person’s expectations and the clinician’s empathy and competence meet, and the “meaning response” blooms.

My two clinical questions are:

1. Why is this person presenting in this way at this time, and what’s maintaining their predicament?
2. And what is this person’s main concern?

But before I ask these questions, I want to take a moment to think about the person and what might be going on in his or her mind.

Benedetti points out that expectancies are an important part of a response to treatment – whether that treatment has any active action, or not. Expectancies are about what a person brings to a therapeutic encounter: there are two, one is stimulus expectancies (anticipations of external events – eg that the next painful experience will be less), and the other is response expectancies (predictions of your own nonvolitional response – eg that after doing this thing, I expect to experience less pain) (Kirsch, 1985).

People who come to see a clinician, especially a clinician from a little-known profession (occupational therapy!) will hold expectancies about what that person will do, but these will likely be weaker than the expectancies a person might hold about seeing a well-known profession. The strength of an expectancy is different from the direction of an expectancy – for example, a negative experience with a physiotherapist might lead to a strongly negative expectancy about future treatments, while not having had an experience with an occupational therapist might lead to a weakly positive expectancy about what’s about to happen.

Along with expectancies, the person will likely be anxious about what’s to come. The possibility of something that might help (or not), meeting a new clinician, and living with pain are all stressors – and anxiety erodes a person’s ability to absorb lots of information, while biasing them towards remembering threatening words (Reidy & Richards, 1997).

So there’s a lot going on in the person’s mind when they attend that first session.

There’s also often a large power imbalance (Joseph-Williams, Edwards & Elwyn, 2014). This emerges from the fact that often clinicians hold a lot more information about the person we’re seeing than they do about us. Especially after we’ve asked a bunch of questions, often quite intimate in nature. For a person seeking help, this imbalance can make it hard to ask questions, to direct the conversation, to hold a sense of independence throughout the encounter.

So having set the scene for you, I’m sure you can agree that how we go about collecting information from a person is incredibly important – especially so that relationship can begin to build.

Introductions

In the introduction, I seek to give the person some information about who I am – not just as a clinician, and the kind of treatments I use, but also about who I am. I’ve drawn inspiration from tikanga Māori here, where the cultural tradition entails letting the person know where I come from and who I’m connected to. I like to let people know my childhood roots are in Turanganui a kiwa, or Gisborne. That the mountain my heart connects with is Mount Hikurangi – the first mountain in NZ to see the sun. The river I connect with is the Taruheru, flowing into the sea in Gisborne. I also let people know my whanau connections – the Lennox’s, and the Thompson’s, are my whanau (extended family), and I’m a 5th generation New Zealander. I now live in Otautahi/Christchurch. This introduction only takes a few minutes, and your culture might not value this form of introduction. For me in Aotearoa/New Zealand, it’s one way I can show respect and follow a tradition that means the person I work with knows something more about me than just my name.

I also include my profession – what I do. I’m an occupational therapist, my job is to help people do what matters in their life contexts.

I like to then let the person know that they’re brave and courageous for seeking help – it’s not easy to say you can’t do this on your own. It takes courage to tell someone that.

Questions

Then I open with a broad question about what has led this person to come to see me. I might add in something about “tell me about your pain and what you’ve done so far for it.” I’ll often ask what their theory is about their pain, what they think is going on.

Then I ask “What is your main concern today?”

Throughout this process I’m reflecting what I’ve heard, to ensure I’ve understood what the person has experienced. I’m NOT giving reinterpretations, I’m NOT giving out new information, I’m just listening.

I often spend time asking about four areas of life: relationships, fun, work, and health. Or I might ask the person to take me through a typical day, from the time they wake up.

I like to find out not just what the person has done to help themselves, but also what they’ve learned from these experiences. The messages they’ve received over time, and the things they’ve tried but perhaps didn’t like or that didn’t help.

Questionnaires

I was a big fan of questionnaires filled out ahead of time, and I am still a fan but don’t use them as much. This is mainly because so many people have filled out endless questionnaires and nobody has sat down with them to talk about what they mean! So I’m a little more selective and focus much more on listening first then choosing something that will offer me and the person some insight into what might be going on. For example, I might choose the PASS20 (McCracken & Dhingra, 2002) because it helps me figure out where to begin with reducing pain-related anxiety. It’s a good measure to use each week to track changes over time, and I’m beginning to delve into repeated measures of progress rather than a pre-post-follow-up approach that’s typical.

Observation

Covid has meant it’s not as easy to carry out observational assessments, but I’m always watching how the person sits, moves, walks, and body language. What I’m not doing is interpreting these observations without talking to the person about them! Too many clinicians make judgements about the person based on maybe one or two observations, out of context of the person’s life and environment, and without checking in with the person to work out what might be contributing to what they see. Let’s not do that – the person might be completely oblivious that they’re guarding their sore hand, or they keep shifting in the chair, or that a habitual movement like taking a jacket off might be easier to do than being asked to perform some weird movement at the command of the clinician!

Pulling it all together

Just as we wouldn’t expect to be marched in for surgery straight after our first consultation with an orthopaedic surgeon, I don’t believe it’s OK to offer something to a person on their first visit just because we feel internal pressure to do so. Having said this, I will often suggest to the person that they spend a bit of time doing some brief “noticing without judging” exercises. We’ll give it a go at this first appointment, so they’re not being expected to go do it without knowing how. The reason I start with brief noticing experiments is that it’s something we could all do more often, it gives the person a new skill (usually) to develop, and it’s often an introduction to being fully present without judging. Being fully present without judging is hard to do when you’re sore because the mind likes to anticipate how bad it’s going to be (“you’ll need to take it very quietly or you’ll pay for it”) or remember previous pains (“last time you just sat around your pain went nuts, you don’t want to risk that now do you?”).

Notes/Documentation

I write conversational notes directly to the person, going through what we’ve talked about and pulling together all the information I’ve gathered in this first meeting. I find it helps me to make sense of what’s going on, it allows me some time to reflect on what I’ve observed and heard, and I can assemble it in a case formulation that the person and I can explore if/when we meet again.

Assessment is never over. Every time I meet with a person I’ll be learning more about what’s going on. I don’t feel pressured to “find it all out” at that first session just because there are goals that must be developed. In fact, one goal I leave in for everyone is “develop goals” (well, I don’t use goal language – it’s more about directions and actions that take you there). Because seriously, how can anyone meet someone and immediately develop goals – that’s disrespectful to the person who may not have had time to think about what matters the most, and it’s disrespectful to the complexity of goal setting as a process anyway.

Theme and variations

I’ve written one approach I use for learning about the person I’m trying to help. There are others – a time line, drawing a life map, mind-mapping, walking and talking, making a coffee – all of these and more can be used to explore the same information.

Let’s not call it “the subjective” – let’s call it what it is, our first “getting to know you” meeting.

Kirsch, I. (1985). Response expectancy as a determinant of experience and behavior. American Psychologist, 40(11), 1189–1202.

Joseph-Williams, N., Edwards, A., & Elwyn, G. (2014). Power imbalance prevents shared decision making. Bmj, 348.

McCracken, L. M., & Dhingra, L. (2002). A short version of the Pain Anxiety Symptoms Scale (PASS-20): preliminary development and validity. Pain Research & Management, 7(1), 45-50.

Reidy, J., & Richards, A. (1997). Anxiety and memory: A recall bias for threatening words in high anxiety. Behaviour Research and Therapy, 35(6), 531-542.

Thought experiment: Would therapists be out of a job if we could “fix” persistent pain?

Every few years someone, somewhere, announces that “it won’t be long before we have a treatment to rid the world of persistent pain.” And there’s a hiss and roar to celebrate this momentous finding, and much ado about how wonderful it will be.

I’m still waiting. BUT I thought it might be an interesting thought experiment to wonder what might happen if a “cure” was available for fibromyalgia.

As readers will know, I have lived with what eventually was named “fibromyalgia” since my early 20’s, and probably longer. I’ve dabbled in various treatments over the years but sadly, nothing but good clean living has helped (by which I mean early to bed, good diet, maintain healthy movement, manage stress, have good friends to connect with, play, have fun). So I would dearly love a treatment that would remove the constant aching, reduce the prolonged DOMs, keep a lid on delayed recovery after injury, and generally offer me a life relatively “normal.”

I am definitely pro-pain reduction and pain treatment. I just haven’t found anything that changes mine.

We have had some spectacular developments in therapies over the past 25 years – particularly in the inflammatory rheumatological diseases like ankylosing spondylitis, rheumatoid arthritis and ulcerative colitis. Treatments with anti-TNF alpha biologicals means that my partner who lives with anky spond now has normal C reactive protein levels, no pain, the disease activity has stopped, and he’s tickety-boo.

So why am I just a tad reserved about the notion of a “fix” based on new discoveries about mechanisms associated with neuropathic and nociplastic pains? Why am I just a little skeptical of a new psychological study showing outstanding results (Ashar, Gordon & Schubiner, 2021)? Am I just worried I’ll be out of a job if there’s an effective treatment?

Nope.

You see, even though some people like my Manly Jack have had a wonderful response to treatment for inflammatory disease, there are many more who have not. Or, who have significant reductions in inflammation – but not to “normal” levels, and accompanied by complications/adverse effects, and, in many instances, continued pain. Why is that? Well – I think it’s because while treatments target mechanisms, people are enormously variable in both biology and more importantly, psychology and sociology.

And it’s these last two that have been identified as amongst the most important contributors to ongoing disability and limited participation.

Now the social deserves a little attention. Drug developments are not cheap. The medication my partner uses is extremely expensive – NZ$1200 every two weeks. Luckily for us, this drug is fully funded by the NZ Government. There’s an economic argument for having meds like these publicly funded – without this drug, it would have been very difficult for my man to carry on working. He was having trouble rolling over in bed at night, had trouble coughing, couldn’t inhale fully, and walked like a little old man. He’s now fit as a buck rat and pays his taxes because he’s working.

The problem is, as we can see from the Covid vaccination roll-outs world-wide, people and countries without resources have less access to effective treatments. Even in NZ where we don’t have the “vaccine hesitancy” of other countries, the people who are least likely to be vaccinated right now are those who have trouble traveling to a centre, who don’t feel “at home” in healthcare, who are hard to reach, perhaps not very literate, don’t speak English or te reo Māori. The NZ government is working incredibly hard to ensure the vaccine is given to these people, and I’m proud of the variety of ways they’re doing so.

But spare a thought for countries where there is no relative affluence. Where other countries don’t have the will to help. Where infrastructure is poor. Where women, children, and people from different cultural backgrounds or religions are discriminated against. In these countries, vaccinations are very slow to reach those in need.

So one risk from a fancy new treatment is that people who need it but can’t afford it, don’t trust healthcare (who would after the stigmatisation so many people receive?), and people who are from countries where the rest of the world doesn’t help out – they risk missing out.

Another risk is that while pain might be reduced or even eliminated, these address only the biology, and people are people, and pain is multidimensional. People remember what it was like to be in pain. People have their own narratives about what’s going on to create their pain. We all learn from our experiences, and beliefs, attitudes, emotions, the influence of others around us, the communities and families and workplaces we come from, all of these have an effect on “what it is like to be experiencing pain.”

We know that people who have completely successful joint replacements without pain, don’t resume the activities they were doing before their joints became painful (see my last blog post). People successfully treated with biologicals still hold fears about future harm that developed before they got their treatment. We know that many people take years before being diagnosed and treated successfully – and that’s a long time to develop beliefs, habits, routines and relationships that don’t support recovery. We also know the trauma of unhelpful and stigmatising healthcare interactions can live long, even after successful care.

Resuming daily life and valued activities is integral to pain rehabilitation. Helping people safely do what matters to them in their life contexts is still needed. In the enthusiasm for applauding treatment advances, we need to remember that people are more than the sum of their diagnoses, more than their biology, and our societies are not fair.

Ashar YK, Gordon A, Schubiner H, et al. Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain: A Randomized Clinical Trial. JAMA Psychiatry. Published online September 29, 2021. doi:10.1001/jamapsychiatry.2021.2669
h ttps://jamanetwork.com/journals/jamapsychiatry/fullarticle/2784694?fbclid=IwAR23strMuoUXYs_Ae9EmTVz9eNAzYxgxAR1IBj64SePpbWeLQL_M_DOaXr8

One plus one may not always equal two

If it hurts – take notice, and avoid it. Learn from it. If there are other people around, make sure your behaviour is noticeable so they take care of you and don’t do what you just did. If they look after you, you’ll probably do the same thing again when you hurt, if they don’t you probably won’t.

This is one description of pain behaviour and how it works. It’s the only part of our pain experience that we can share directly with one another (actions and words). The “doing” part is also the part that is most affected by pain – even distress is signalled to others – so it’s unsurprising that a lot of attention has been paid to how therapists can change behaviours that are unhelpful.

Many of us start with offering an explanation. Language is something that sets humans apart from other creatures because we learn concepts, and associate one concept with another through it (see Beeckman, Hughes, Kissi, Simons & Goubert (2019) for excellent insights into relational frame theory and pain). I’m sure there are many clinicians who’ve tried to give information (to “educate”) to a person and found it works well. And then there are those who just don’t get it. There are three main points that people who respond well to “education” seem to find useful: (1) pain doesn’t mean my body is damaged (the old “hurt does not equal harm” message that originated with Fordyce. Butler (2017) offers us a selection of Fordyce’s wisdom – and wit); (2) thoughts, emotions and experiences affect my pain (again, something the cognitive behavioural therapists have been sharing with people since the beginning of multidisciplinary pain management programmes); and (3) I can retrain my over-protective nervous system (yes, another thing we’ve been doing in pain management for many years… not that we are unlearning pain, we’re helping the nervous system settle down and becoming less distressed by the experience).

We quite like talking to people – maybe because it appeals to our often dictatorial mind (read A Liberated Mind for a new take on this!). And so for people experiencing pain, we talk. But talk on its own isn’t super-effective. After all, for every one time we hear “pain doesn’t mean my body is damaged” we can Google and find literally hundreds of messages telling us our spine is fragile, our joints are damaged and pain is a sign there is harm.

So what is more potent than words? It’s learning by experience. Doing.

A brand new analysis of “sufficient conditions” for psychological therapy was published in Pain (Batho, Kneale, Sutcliffe & Williams, 2021).

Now I do have some reservations about calling this “psychological” because that word is loaded with meanings, not all of them helpful. Truth to tell, we humans use psychological approaches effortlessly in daily life – and it’s not “in the head/mind/emotions” which is almost inevitably what people first think of when they hear it…

In this analysis (which is complex – go read the paper!), the authors investigated 38 studies, did some horrendous statistical analysis and compared the ten most effective treatments with the ten least effective treatments. What they found was quite surprising, and I’m still pondering what it means.

They established that “interventions using graded exposure, graded exercise or behavioural rehearsal (exposure/activity), and interventions aiming to modify reinforcement contingencies (social/ operant) reduced disability levels when either approach was applied but not both.” [italics mine] They also found “exposure/activity can improve distress levels when combined with cognitive restructuring, as long as social/operant methods are not included in treatment.” [italics mine]

It pleased me to find that graded exposure or reactivation, when applied in the absence of social and operant contingencies, reduced disability and distress. And that social/operant approaches reduced disability on its own. The reason I’m happy is that graded exposure and reactivation with a dab of “let’s notice your thoughts and check out whether they’re helping you” are very common approaches used across occupational therapy, physiotherapy, chiropractic, osteopathy, coaching and a whole bunch of therapists who work with people in pain. Graded reactivation with information has been the mainstay of pain management since at least the 1980’s. We know it’s helpful. Graded exposure has gained popularity since the mid-1990’s and we know that it’s helpful too. And we use social reinforcement just because we’re humans.

In the analysis, ACT was used in only one study. ACT doesn’t do cognitive restructuring and instead, uses six interwoven processes that together support psychological flexibility. I use ACT as my primary approach, both for myself in daily living, and with people who come to see me for help with their pain.

What I like about ACT is that it’s flexible, allows people to notice what their mind tells them, but helps them to step back from that dictator within to make a choice about what to do. It’s the doing part (based on what matters in a person’s life) that I enjoy because it involves both graded exposure and graded reactivation. And if a person doesn’t relate to what they’ve been told about their pain, we don’t have to offer another explanation, we can help the person work out what works for them in the context of their own life.

So where are we with this now? Given that we can’t stop being social animals, and that we respond to one another without knowing it, I’m not sure we can avoid inadvertently using social and operant approaches as therapists. What we can do, though, is become more knowledgeable about behavioural approaches in pain management and rehabilitation – and that undoubtedly means learning a whole lot more psychology. Perhaps we might need to reframe our own understanding of psychology so we feel more comfortable with it – a bit like explaining pain and cognitive functional therapy have both helped us feel OK to step into doing what has often been the territory of psychologists.

Batho, A., Kneale, D., Sutcliffe, K., & Williams, A. C. C. (2021, Oct 1). Sufficient conditions for effective psychological treatment of chronic pain: a qualitative comparative analysis. Pain, 162(10), 2472-2485. https://doi.org/10.1097/j.pain.0000000000002242

Beeckman, M., Hughes, S., Kissi, A., Simons, L. E., & Goubert, L. (2019, Oct). How an Understanding of Our Ability to Adhere to Verbal Rules Can Increase Insight Into (Mal)adaptive Functioning in Chronic Pain. Journal of Pain, 20(10), 1141-1154. https://doi.org/10.1016/j.jpain.2019.02.013

Butler, S. (2017). The wit and wisdom of Wilbert (Bill) Fordyce (1923-2009). Scandinavian Journal of Pain, 16(1), 160-163.

Leake, H. B., Moseley, G. L., Stanton, T. R., O’Hagan, E. T., & Heathcote, L. C. (2021, Oct 1). What do patients value learning about pain? A mixed-methods survey on the relevance of target concepts after pain science education. Pain, 162(10), 2558-2568. https://doi.org/10.1097/j.pain.0000000000002244

When living with pain is too hard

**If you’re a person living with pain, and this headline caught your attention because you’re feeling it’s just too hard to carry on – PLEASE take a moment to seek help. If you’re feeling you can’t because they might judge you, or try to stop you feeling this way, at the very least give yourself an hour before you take any action. If that feels too long, give yourself a minute. Get through that, and give yourself another minute. And so on – until you’ve give yourself some time to let this awful feeling ease up a little. You can always revisit your decision to wait. Speak to someone – anonymously if you need to. There are helplines in every country. Phone one. Please.**

Living with persistent pain can be really hard, and clinicians, family and the person with pain can be worried about suicidal thoughts and possible actions. There’s good reason to be concerned, too, as a recent study from the 2012 Canadian Community Health Survey shows.

Grocott, Sommer and El-Gabalawy (2021) used the data obtained from this Canadian Health Survey to explore the relationships between pain intensity and suicidality in people with arthritis, migraines and low back pain.

The first question is how many people in the overall population involved in this study had any of the three diagnostic groups – and, as expected and in line with many epidemiological studies, between 10.3% (migraines) and 18.1% (low back pain) indicated they had been diagnosed. The “usual” pain levels across all three groups were between 25.9 – 27.7% indicating their pain was “mild”, 52.5 – 54.5% said it was “moderate”, and 19.7 – 20.9% described it as “severe”. This does not surprise me one bit – moderate levels of pain intensity are really common, and, albeit acknolwedging the difficulty of rating pain intensity on a numeric scale and the complex relationship between pain intensity and interference with daily life, demonstrate just how necessary persistent pain services are as a health services priority.

The team then identified the rates of “lifetime” suicidality – these were measured using the following questions.

“you seriously thought about committing suicide or taking your own life” (i.e., suicide ideation; yes, no), “you made a plan for committing suicide” (i.e., suicide plans; yes, no), or “you attempted suicide or tried to take your own life” (i.e., suicide attempts; yes, no).

It’s important to note that this question asked about whether the person had ever, during their life, had these thoughts – not that they were currently present. Remember this as you interpret this study, because suicidal thoughts are relatively common but acting on those thoughts is less common.

The authors found that people who were usually in pain were more likely to have suicidal thoughts, plans or had made an attempt than those who had periods of time without pain (ie intermittent pain). The different rates were reasonably large, too – just in terms of ideation, between 18.7 – 34.0% of people who were usually in pain had suicidal thoughts as opposed to those with intermittent pain (10.5-16.6%), and this association was particularly strong for people with migraine. For people with low back pain, having pain all the time was associated with much greater odds of suicidal thoughts (1.79, 95% CI [1.19-2.68], p<.05).

Pain intensity was also a factor – lifetime suicidality prevalence increased as pain intensity increased, and this was relevant to all pain conditions measured, and especially amongst people with severe pain and migraines.

A good question to ask is whether the odds were the same for people with current mental illness as for those without – and using the magic of statistics, the authors found that this only held for some forms of pain. People with arthritis (note they didn’t identify the kind of arthritis people had) reported lower levels of suicidality even in the presence of mental ill health.

The authors point out that this is an interesting study in that yes, suicidality was higher in people with migraines, and similar to other studies, but their intriguing finding was that differences in the intensity of usual pain increased the odds, along with elevated odds if people reported higher levels of pain intensity.

Why did I choose to summarise this paper?

A few reasons: one is that as health professionals, we may not be aware of just how many people in our communities live with pain. It’s a lot – and this study only included specific diagnoses. Yet, at least in New Zealand, pain management services for people with pain are scarce.

Most people in New Zealand will maybe get referred to a physiotherapist, but it’s often difficult for people with persistent pain to raise their issues with pain with their health provider and for those providers to respond with empathy (Thompson, Dowell, Hilder, Macdonald, Stubbe & Alchin, 2021). This means that many people may not be seen by clinicians with confidence to help people with psychosocial aspects of their pain (eg Holopainen, Simpson, Piirainen, Karppinen, Schutze, O’Sullivan & Ken, 2020, Zangoni & Thompson, 2017) if they even indicate that this is a concern for them during the consultation.

Another reason is that many clinicians who work mainly in “physical” health may not know what to do if someone does disclose suicidal thoughts. It is confronting to hear someone say they don’t want to live any more – and knowing what to do next can feel highly risky. How does this fit within my scope of practice? What if I say something wrong and the person goes ahead and attempts suicide?

Note though, that this study didn’t look at current levels of suicidal thought – it’s lifetime prevalence. Perhaps people who have had occasion to think about killing themselves have a greater degree of vulnerability for persistent pain, particularly when pain is intense. We don’t know – but the authors speculate. Worth reading the paper in full to find out their thoughts.

My thoughts (briefly!) are:

• Prepare ahead of time. We’ll all likely encounter a person who is really distressed, at the end of their tether, and indicates they’re thinking of harming themselves. Being prepared makes responding to this situation much easier.
• Preparation should include writing a policy for your practice or your setting. It should include a list of people to contact in a psychiatric emergency (when a person indicates they’re ready to take action to harm themselves), as well as specific actions to take when talking to the person.
• We’re not all psychologists and it’s not our job to be psychologists – all we’re asked to do in this kind of situation is be a human. What I mean by this is – listen, affirm that the person is feeling really bad and support them to access the help they need. This might mean calling the psychologist if you have one you work with regularly, or calling the person’s family doctor, or calling psychiatric emergency services.
• Ensure you hand the person to someone who will take care of them. This means not letting them go off in their car without letting their family doctor know, even if they say they’re fine. For your own reassurance this is important.
• Take care of yourself. Don’t just go on to see the next person waiting for you. Take some time to process what’s happened, what you did, and debrief with someone you trust. It doesn’t need to be a trauma counsellor – it’s just as useful to talk to your colleagues who know you and the kind of work you do. Go have a cup of coffee, go for a walk, give yourself space to recognise that you just helped someone who was really distressed. That’s an important job.
• Don’t ignore the person and pretend they didn’t just say that. Affirm that they’re feeling rotten. Don’t trivialise it and suggest they should just harden up, or it’s not really that bad, or that they’re at fault for feeling this way. Just be gentle and human, and recognise the privilege you have – this person trusts you enough to say how they’re really feeling. It’s an honour. So if you can’t think of anything to say, just sit with them and bear witness to their distress. Hand them a tissue. Be there for them.

Oh, and in that paper, while 18.7 – 34.0% had suicidal thoughts over their lifetime, 7.2–14.5% had made actual plans, while 6.6–14.7% had made attempts. Don’t trivialise suicidal thoughts, but at the same time, don’t freak out that the person is going to kill themselves – just take action to support them, and in most cases, the thoughts will fade as the person gains hope.

Grocott, B., Sommer, J. L., & El-Gabalawy, R. (2021, Jun 28). Usual presence and intensity of pain are differentially associated with suicidality across chronic pain conditions: A population-based study. Journal of Psychosomatic Research, 148, 110557. https://doi.org/10.1016/j.jpsychores.2021.110557

Holopainen, M. R., Simpson, M. P., Piirainen, D. A., Karppinen, P. J., Schutze, D. R., Smith, P. A., O’Sullivan, P. P., & Kent, A. P. (2020, Jan 16). Physiotherapists’ perceptions of learning and implementing a biopsychosocial intervention to treat musculoskeletal pain conditions: a systematic review and metasynthesis of qualitative studies. Pain. https://doi.org/10.1097/j.pain.0000000000001809

Thompson, L., Dowell, A., Hilder, J., Macdonald, L., Stubbe, M., & Alchin, J. (2021, Jan 4). How do patients and General Practitioners talk about pain and negotiate empathy in consultations? A direct observational study. Health & Social Care in the Community. https://doi.org/10.1111/hsc.13259

Zangoni, G., & Thomson, O. P. (2017, 2//). ‘I need to do another course’ – Italian physiotherapists’ knowledge and beliefs when assessing psychosocial factors in patients presenting with chronic low back pain. Musculoskeletal Science and Practice, 27, 71-77. https://doi.org/https://doi.org/10.1016/j.msksp.2016.12.015

Why I don’t trust my clinical reasoning: and why this matters

“See someone experienced” I hear people with pain say. “They’ll know what’s wrong with you.”

Well, based on the research I’ve read, I wouldn’t be so sure. In fact, I’m certain my own clinical reasoning is biased, prone to errors that I don’t notice, and influenced by factors that most clinicians would be horrified to think they, too, were influenced by.

Let me give you a few to ponder:

I’m interested in women and pain – and there’s a lot of evidence showing that women’s pain doesn’t get the same kind of diagnostic and management attention as men. Now part of this is due to the inherent bias in research where experimental studies often rely on male rats, mice and undergraduates because they don’t have those pesky hormonal fluctuations each month. Even volunteering to take part in a pain study has been found to be biased – people who volunteer have been shown to be more risk-taking and more extraverted (Skinner, 1982) – though to be fair this is an old study!

But contextual factors such as gender, distress and even the supposed diagnosis do influence judgements about pain intensity (Bernardes & Lima, 2011) including potentially life-threatening chest pain (Keogh, Hamid, Hamid & Ellery, 2004). Gender bias has been identified in a large literature review of gender bias in healthcare and gendered norms towards people with chronic pain (Samulowitz, Gremyr, Eriksson & Hensing, 2018).

And if you have the misfortune to be judged to have low trustworthiness and you’re a woman, you’re more likely to be thought to have less pain and to be exaggerating your pain (Schafer, Prkachin, Kaseweter & Williams, 2016). Beware if you’re overweight and a woman because you’ll be likely judged as having less intense pain, the pain will be judged as less interfering, more exaggerated and less related to “medical” factors – women’s pain in particular is likely to be judged as “psychological” and given psychological therapy rather than other treatments (Miller, Allison, Trost, De Ruddere, Wheelis, Goubert & Hirsch, 2018).

The weird thing is that the clinicians involved in these studies were oblivious to their bias. And let’s not even go there with people of colour or so-called “minority” groups such as LGBTQI.

So as clinicians our initial impressions of a person can lead us astray – and I haven’t even started with the contribution experience has on clinical reasoning. Let me go there then!

Something that cognitive psychologists have explored for some years now, is the type of thinking that we draw on for clinical reasoning. System one is “fast reasoning” – where we rapidly, instinctively and emotionally make decisions on the fly. Kahneman (1982) first described these two processes and noted that fast thinking gets better with rehearsal and are helpful especially for skilled clinicians needing to make decisions in pressured contexts, and draw on “pattern recognition” – or to be precise, draw on deviation from a recognised pattern (Preisz, 2019). System two is “slow reasoning” where decisions are made in a considered way, are not influenced by emotional state, and can be thought of as “rational.” Slow thinking is most useful where the situation is complex, where decisions need to weigh multiple pieces of information, where the situation might be novel, or where, for persistent pain in particular, there are multiple disease processes occurring.

OK, so we should choose system two, right? Not so fast! System one is hard to switch from – it’s what underpins “intuition” or “hunches” – and it gets more entrenched the more experienced we are. According to Preisz (2019), system one “seeks to form a coherent, plausible story by relying on association, memories, pattern matching and assumption.”

Why is system one thinking not so great? Well, we’re human. We’re human in the way we respond to any reasoning situation – we anchor on the first and most “plausible” ideas, and these might be unrelated to the actual presentation we see. For example, if we’ve been reading a journal article on a new treatment and its indications, it’s amazing how many people will present with those exact same indications in the next week! This is availability bias or anchoring bias. We’re also inclined to believe our own patients and judgements are different from “those people” – especially “those people” who might respond best to clinical guidelines. This means that even in the face of clear-cut research showing the lack of effects of knee arthroscopy (Brignardello-Petersen, Guyatt, Buchbinder, Poolman et al, 2017) an orthopaedic surgeon I know argued that “we choose our patients very carefully” – essentially arguing that his patients are different, and this approach is the best one.

If experienced clinicians find it hard to “unstick” from old practice, or move quickly to “intuitive” reasoning (even if it’s called “pattern recognition”), and if we all find it hard to recognise when we’re biased, or even that we are biased, what on earth should we do? All us old hands should retire maybe? All follow algorithms and not use “clinical judgement”? Take the “human” out of clinical management and use AI?

Some of these things might work. There is evidence that algorithms and AI can offer effective and (perhaps) less biased diagnosis and management than our unaided human brain (Kadhim, 2018) but there are also studies showing that direct comparisons between decision aids and clinical judgement are rarely made, and those that have been carried out don’t show superior results (Schriger, Elder, & Cooper, 2017). But watch this space: AI is a rapidly developing area and I predict greater use of this over time.

The risk with decision aids is – garbage in, garbage out. If we look at existing research we can see that male, pale and potentially stale dominates: this doesn’t bode well for people of colour, for women, for the unique and idiosyncratic combination of diseases a person can have, or for untangling the impact of disease on the person – in other words, disability and illness.

So, to summarise. We are all biased, and it’s best to acknowledge this to ourselves upfront and personal. We can then turn to strategies that may reduce the biases. For me, the one I turn to most often is a case formulation, using information gathered from a semi-structured interview and a standard set of questionnaires. These have been developed a priori so my biases in information gathering are limited. By taking time to follow a case formulation, my thinking is slowed to that more deliberative system two. At least some of the biases I know I’m prone to are mitigated.

And yet, I know I am biased. That’s why I use a supervision relationship to help me identify those biases, to be challenged and to reflect.

Bernardes, S. F., & Lima, M. L. (2011, Dec). 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.

Brignardello-Petersen, R., Guyatt, G. H., Buchbinder, R., Poolman, R. W., Schandelmaier, S., Chang, Y., Sadeghirad, B., Evaniew, N., & Vandvik, P. O. (2017, May 11). Knee arthroscopy versus conservative management in patients with degenerative knee disease: a systematic review. BMJ Open, 7(5), e016114. https://doi.org/10.1136/bmjopen-2017-016114

Kadhim, M. A. (2018). FNDSB: A fuzzy-neuro decision support system for back pain diagnosis. Cognitive Systems Research, 52, 691-700. https://doi.org/10.1016/j.cogsys.2018.08.021

Kahneman, D., Slovic, S. P., Slovic, P., & Tversky, A. (1982). Judgment under uncertainty: Heuristics and biases. Cambridge university press.

Keogh, E., Hamid, R., Hamid, S., & Ellery, D. (2004). Investigating the effect of anxiety sensitivity, gender and negative interpretative bias on the perception of chest pain. Pain, 111(1-2), 209-217.

Miller, M. M., Allison, A., Trost, Z., De Ruddere, L., Wheelis, T., Goubert, L., & Hirsh, A. T. (2018, Jan). Differential Effect of Patient Weight on Pain-Related Judgements About Male and Female Chronic Low Back Pain Patients. J Pain, 19(1), 57-66. https://doi.org/10.1016/j.jpain.2017.09.001

Preisz, A. (2019, Jun). Fast and slow thinking; and the problem of conflating clinical reasoning and ethical deliberation in acute decision-making. Journal of Paediatric Child Health, 55(6), 621-624. https://doi.org/10.1111/jpc.14447

Samulowitz, A., Gremyr, I., Eriksson, E., & Hensing, G. (2018). “Brave Men” and “Emotional Women”: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain. Pain Research and Management, 2018.

Schafer, G., Prkachin, K. M., Kaseweter, K. A., & Williams, A. C. (2016, Aug). Health care providers’ judgments in chronic pain: the influence of gender and trustworthiness. Pain, 157(8), 1618-1625. https://doi.org/10.1097/j.pain.0000000000000536

Schriger, D. L., Elder, J. W., & Cooper, R. J. (2017, Sep). Structured Clinical Decision Aids Are Seldom Compared With Subjective Physician Judgment, and Are Seldom Superior. Ann Emerg Med, 70(3), 338-344 e333. https://doi.org/10.1016/j.annemergmed.2016.12.004

Skinner, N. F. (1982, 1982/12/01). Personality characteristics of volunteers for painful experiments. Bulletin of the Psychonomic Society, 20(6), 299-300. https://doi.org/10.3758/BF03330107

Flare-ups and how to handle them

If you live with persistent pain of any kind, you’ll know what a flare-up is. Periods of time when pain is exacerbated and sustained at a higher than average level over at least a few days, often longer. Flare-ups always settle down – but oh my, it can feel like they’re going on forever!

Handling a flare-up is not quite the same as handling everyday pain. Everyday pain, for those of us who manage it independently of healthcare professionals, usually needs a generally steady routine, not too many surprises. A regimen of movement, relaxation, fun, mindfulness, plodding on and managing stress. A little boring, if you will. Most people will add or subtract some medication (if there is some to help) and vary the activity level depending on the demands of the day.

But when a flare-up happens, some people can find themselves side-swiped and confidence can plummet, while the usual everyday coping can feel like it’s not quite cutting it. For some people, it can be a complete surprise to find that on one day everything feels “normal” yet the next can be a flare-up.

What health professionals do during a flare-up is important, because how we respond and our attitude towards flare-ups can build confidence, or knock it even further.

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Identify your early warning signs

Even though a flare-up can feel like it’s come from out of the blue, mostly there are early warning signs that perhaps haven’t quite been recognised (or have been ignored because something else is more important than pain intensity). It can be a period of feeling really good (so that the normal coping strategies don’t feel quite as relevant, and are just a bit easier to forget to do). It can be fatigue, or feeling a little overloaded. It can be a rotten night’s sleep, or a really busy day without the normal recovery time.

An early warning sign can be being more achey than normal, a little stiff and less keen to move. For some it can be feeling a little irritable, or a little down.

There may be parts of the body that don’t typically get sore – but during a flare-up, they begin to join in the action. The quality of the pain may be different: burning, deeper, achier.

Noting these “flare-up early warning signs” in a diary can be a great way to develop an alert system to remind us to focus on keeping on with the strategies that we’ve found useful – like a reminder not to suddenly stop what’s working!

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Rescue Remedy

No – I don’t mean the drops you can get! Please no!! The rescue remedy I advocate is to develop a set of strategies, a plan, that is written down ahead of when it’s needed. During a flare-up, thinking straight can be difficult, so pre-planning can reduce the effort at the time.

I always begin by developed a “Can Cope” card. This is a business-card sized card with four or five simple steps that can be used immediately and may even abort a flare-up before it begins. The first instruction is always “Breathe out!” followed by using a calming word like “relax” or “I’m fine” or “chill out”. Three to five out breaths can help to interrupt stressful thinking, enough to move on to the next step that I pretty much always include: notice. Noticing in this instance is a few minutes of body scanning to notice just what is happening in the body in the here and now. A body scan allows an opportunity to recognise where any additional tension is held, to notice and stop rushing if that’s part of the problem, to simply be for a moment or two.

I then like to include a few actions like get up and stretch, or go grab a drink of water, something that allows for some whole body movement – maybe a walk around the block. And finally, I end the Can Cope Card with a reminder that these flare-ups do end!

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Working out why it happened

It’s tempting to try and find out what went wrong and why a flare-up happened, but it’s not uncommon to be unable to put a finger on it. So many variables are likely to influence! As I mentioned at the start of this blog, it can be a night of rotten sleep, a busy day, maybe a change in routine, feeling overloaded, maybe even having had a period of feeling really good.

If flare-ups don’t trouble the person very much, analysing how and why it happened may be counter-productive. It’s common for us to think firstly about movements or activities that are out of the ordinary, or perhaps more demanding than normal. These are the easiest flare-ups to identify. They can even be predicted, so can be built in to the weekly planning.

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Other contributors can be much more difficult to identify – especially those involving emotional factors, stress, or enjoyable activities. For me, sitting for long periods, as in a conference, or travelling to a conference can be a flare-up initiator. Holidays not so much, but it’s not uncommon for me to feel sore in the days before heading away on holiday – all that rushing around, getting things ready!

Often it can be a cumulative series of seemingly irrelevant decisions. A whole cascade of tiny changes to routine that eventually tips the balance over – maybe working late a few nights in a week, combined with not as much time for exercising, and little more stress at work and not doing mindfulness or taking time out. On their own, they don’t seem much – but they erode the reserves needed to deal with pain on a daily basis.

If pain flare-ups like this do bother the person (or you!), it’s worth taking some time to track activities and mood, fatigue, sleep, and habits for a while. Simply tracking can be enough of a reminder to keep the habits going! But analysing what happens to energy, pain, mood can mean better capability for preparing and noticing in advance. That way, while a flare-up can be on the cards, gradually the person can get better at predicting what things set it off, and can make an active choice about whether it’s worth doing.

Health professionals

If we aim to prevent flare-ups, we’re on a hiding to nowhere. While there’s not a lot of research about on flare-ups, what research there is shows that flare-ups are common – 51% of people interviewed by telephone, all of whom had chronic low back pain, reported flare-ups (Suri, Saunders & Von Korff, 2012). It may be a matter of language: flare-ups can be called “breakthrough pain” (although this applies to cancer pain, when pain ‘breaks through’ the opioid dose, and shouldn’t be applied to noncancer pain); flare-ups can be called relapses or exacerbations or fluctuations. Whatever they’re called, there just doesn’t seem to be much in the research literature although qualitative studies do seem to show flare-ups as important.

If flare-ups are common, what are we doing as health professionals, to help people with pain learn to roll with the fluctuations? I think this depends a great deal on our own fears about pain. If we feel uncomfortable about pain, worry that our patients are “doing harm”, or feel concerned that they may get distressed because of pain, we may inadvertently convey this to them. We may try to dig deep into what may be causing the flare-up, we may ask the person to stop doing things, or alter their programme to prevent the flare-ups from “getting worse”. Or we may simply avoid discussing them at all. None of these approaches seem helpful to me.

I think (yep, opinion time!) that we need to convey our confidence that this person has the skills, capability and confidence to manage this themselves. I think it’s useful not to rush in to try to “fix” the problem, or to help the person out too quickly. This doesn’t convey the message that we are confident they can manage! It doesn’t mean ignoring the person, but it does mean we might want to think about asking the person what they can do to get through. And we can let people know how good it is that they’ve come in to see us even though it’s a high pain day. We can remind people of the skills they have and think of asking them which options they’d like to use. This might sound contradictory after I’ve just said not to rush in to “fix”, but to me the difference is that in one we’re supplying the answers and doing to, but in the latter we’re reminding people and giving the choice back to them.

I also think it’s worth avoiding analysing all the possible contributors, at least initially. Why? Because our temptation will probably be to focus on movements or activity changes that “caused” the flare-up, but it’s probable that many tiny decisions, multiple factors are the real issue. And if we focus on physical factors, we’re conveying yet again that pain is a problem of “the physical” – which may not be the case.

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I’ve often said that if someone hasn’t had a flare-up while we’ve been working together, then I haven’t done my job. Flare-ups are part of living with persistent pain, and learning to roll with them is a skill I think everyone who lives with persistent pain can develop. Even though I know it’s difficult. But as people with persistent pain know, we are tough!

Suri, P , Saunders, & Von Korff, M., (2012). Prevalence and Characteristics of Flare-ups of Chronic Nonspecific Back Pain in Primary Care: A Telephone Survey. Clinical Journal of Pain, 28(7), 573-580.

Having The Conversation…

Over the past few weeks I’ve been posing some of the curly questions that I don’t think have yet been answered in pain rehabilitation. In fact, some of them have yet to be investigated in any depth. Today I’m stepping out into the abyss to offer my current thoughts on one question that has been rattling around for some time: how do we have a conversation about pain and its persistence? I want to begin by stating very emphatically, that I do believe pain can change. And that the way a person views or interprets their experience can change, and there is reversibility in pain intensity and quality. Having a conversation about persistence doesn’t mean pain will inevitably hang around. So why talk about it?

One major reason comes from people living with pain. In a recent book (Meanings of Pain) I quoted several qualitative studies where “pain acceptance” and conversations about this were highly valued by people with pain – in fact, in my own research, learning that pain would either likely remain in its current form, or would be a feature in some way, was part of a turning point (Lennox Thompson, Gage & Kirk, 2019). The turning point was away from pursuing pain reduction as a primary goal, and towards living a life. “And then I finally said to myself, nothing’s going to work. I might as well try to live with it, and learn to live with it, and since then I haven’t tried pursuing any type of pain relief” (Henwood, Ellis, Logan, Dubouloz & D’Eon, 2012), “All the previous treatments dealt with taking
away the pain. This is the first time one gets a treatment that focuses on acceptance of the pain, and you really understand that this is chronic pain that will never disappear; it’s the first time one has received the message from this angle” ( Pietilä, Stålnacke, Enthoven, Stenberg, 2018)

I guess I don’t see this as a dichotomous choice. It’s not simply “pain reduction” OR “pain acceptance”. I think we can have more than one goal. It’s a matter of emphasis, where energy gets spent. Mark Sullivan and Betty Ferrell argue that health professionals need to reconceptualise their contribution to health: is it to treat disease, or to “advance the person’s capacity for personally meaningful action?” (Sullivan & Ferrell, 2005).

The issue is, that doing what matters can mean “doing what matters provided that pain isn’t present”, or “doing what matters provided that pain has gone”, or “doing what matters provided that it feels good”.

Back to the conversation. The purpose of the conversation is to allow some wiggle room around the “provided that”. Because, in the pursuit of pain reduction life can pass by. Jobs go, relationships fail, kids grow up and leave home, expertise and capability become obsolete, mates develop new pursuits and meanwhile, as people living with persistent pain have said, they’re living in “limbo land”. Reconnecting with values-based activities as one way to feel more whole again often means navigating the meaning of pain fluctuations. It can mean developing ways to allow pain to be present without trying to change the experience, or escape the experience.

Guiding the conversation

I routinely use guided discovery as my main form of therapeutic communication. My approach to The Conversation is to begin by finding out about the person’s theory of their pain – what do they think is going on? What have they been told and what sense have they made of this? What has it been like to have this experience bring attention to daily movements and activities? How are they going about daily life? What’s helped, what hasn’t? What have they given up? What new things have they had to do? What’s that been like?

I usually jot down the good and not so good of all of this – it helps to have a record both for the person and for me. I like to reassure people that they’re doing their very best in what can feel like an unrewarding endeavour. I also explore the impact of treatments on the person. What is it like to take medications, do exercises, have to make time to attend appointments? What is it like to tell one’s story to so many people – who often don’t reciprocate?

Drawing from both my clinical experience and from what I’ve learned about ACT (Acceptance and Commitment Therapy), I offer people a chance to reflect on the impact of not only pain, but also the process of getting treatment. On the work that goes into rehabilitation. I ask them what sense they make of life at the moment. What do they take from all of this?

And in that moment I also ask about what’s important in life. What matters. And how well is that person able to do at least something of what matters in their life? And is it possible to move towards doing more of what matters in life even in the presence of pain? And what sense does the person make of all we’ve discussed?

If I’m asked about whether pain will go, I am open about the possibility that it will not completely vanish. This reflects my understanding of neuroscience, the many many studies into all kinds of treatments, and from the words of people in qualitative studies who indicate that this is an important acknowledgement. I’m also not suggesting that anyone stop participating in pain reduction efforts, not at all. It’s not my decision. It’s never our decision – it’s the person with pain who must decide. I will point out, though, that I don’t think living well with pain is often offered to people as a positive option. It’s often delivered as “well if this doesn’t work, you can try doing some pain management”. Not exactly a ringing endorsement. Not even a neutral suggestion.

The Conversation isn’t about stopping treatment. It’s not about pain reduction vs pain management. It’s not about pain persistence as much as it is about ensuring rehabilitation focuses on what matters to people. For rehabilitation is not about eradicating the disease that caused the problem, it’s about restoring and optimising capabilities, enabling people to participate in their own lives as much as possible. Sometimes, in the pursuit of restoring capabilities, perhaps participating in life is forgotten.

Henwood P, Ellis J, Logan J, Dubouloz C-J, D’Eon J. Acceptance of chronic neuropathic pain in spinal cord injured persons: a qualitative approach. Pain Manag Nurs. 2012;13(4):215–22.

Lennox Thompson B, Gage J, Kirk R. Living well with chronic pain: a classical grounded theory. Disabil Rehabil. 2019:1–12.

Pietilä Holmner E, Stålnacke B-M, Enthoven P, Stenberg G. The acceptance. J Rehabil Med. 2018;50(1):73–9.

Sullivan, Mark, & Ferrell, Betty. (2005). Ethical Challenges in the Management of Chronic Nonmalignant Pain: Negotiating Through the Cloud of Doubt. The Journal of Pain, 6(1), 2-9.

Pacing, pacing, pacing…

If there’s one pain management and rehabilitation strategy that keeps me awake at night, it’s pacing. Living with persistent pain, I loathe the idea of pacing because I know everyone “booms and busts” from time to time, and few people like the idea of planning every single aspect of every single day as they come to grips with modifying their daily routines. BUT it’s one of the most popular strategies in textbooks, self-help books, and in treatment so there must be something in it, right?

Vexed definitions

One of the problems with the whole pacing concept is defining what we mean by it. I like Nicole Andrew’s approach: Nicole acknowledges that defining pacing is difficult, so when she talks about her research into pacing, she’s clear about the definition she’s using in that piece of work.

Various definitions abound. As a broad concept, pacing refers to organising daily activities in such a way that a specific end is achieved. The difficulty arises when we begin to determine the end goal of pacing (pain reduction? maintaining consistent activity levels? completing important tasks? avoiding a flare-up? reducing the relationship between pain fluctuations and activity? increasing overall activity levels over time?) and the means used to achieve these ends (time as a guide? activity intensity as a guide? importance and values as a guide? “spoons” of energy as a guide?). You can see how complex this concept is…

Nielson, Jensen, Karsdorp & Vlaeyen (2013) discussed this and identified two treatment goals (they weren’t considering the spontaneous use of pacing, nor the use of pacing outside a treatment context). “Whereas the operant approach seeks to improve function (decrease disability), the energy conservation approach is designed to reduce symptoms (pain, fatigue).”

Fordyce developed the operant conditioning approach, viewing pain behaviours as reinforced by other people – or by avoiding negative consequences such as a pain flare-up. His approach involved establishing a quota – a certain number, or a certain time in which people maintain activity irrespective of pain flucuations. In a clinical setting, this is the approach I mainly use, though there is an art to setting the “minimum” a person does (setting a baseline) and to nudging the activity levels up.

Sternbach, another influential pain management person from around the late 1970’s, followed a similar approach – but instead of simply establishing a baseline, he advised people to anticipate the point at which they would increase their pain and to stop the activity just before then. This is also a popular approach in pain management rehabilitation today – but has the unfortunate effect of reinforcing a pain avoidance (and pain contingent) approach, if not done very carefully.

Occupational therapists have frequently advocated the “5 p’s”. Pacing, positioning, posture, persistence and problem-solving. This approach was based on energy conservation, and while I can’t find the original papers from which this approach was developed, it was introduced to me as part of rheumatology practice, and in conditions where fatigue is a problem such as multiple sclerosis. I can see it being used today as part of the popular “spoons” meme where people are thought to have a fixed number of “spoons” of energy, and need to allocate their energy accordingly. My main criticism of this approach is that it doesn’t allow for people to increase their capabilities over time, either through “training” effects, or habituation.

Now, how about some evidence for any of these approaches?

Well therein lies a problem – there is very little research to support activity pacing despite its popularity. This is why I was so interested when I spotted a pilot study published in Journal of Pain, testing the energy conservation approach to activity managing (aka pacing) against an operant conditioning approach in a group of people with fibromyalgia. This group of people provides us with a useful population to test both approaches because fatigue is thought to be a prominent feature of fibromyalgia, and energy conservation has some degree of face validity for managing fatigue.

The design of the study involved four groups, two immediately treated using either an operant conditioning variant of pacing, or the energy conservation variant, and two groups with delayed treatments, again with the two versions (these groups acted as the control groups for this study). 178 participants were involved, with confirmed diagnoses of fibromyalgia given by occupational therapists using the American College of Rheumatology’s 2010 FMS diagnostic criteria. If the occupational therapist had doubts about the individual’s diagnosis, or the person wasn’t able to provide formal documentation confirming the diagnosis, the study rheumatologist assessed the potential participant for inclusion. This is an important procedure in studies of people living with fibromyalgia, given there is no definitive diagnostic test such as a blood test or imaging result.

The two treatment approaches were documented in treatment manuals to establish consistency, and it’s interesting to note that the approaches were applied across all activities in a day rather than just exercise, as often happens. For full descriptions of each of the ten treatment sessions, the article should be referred to, and the treatment manuals are available at http://research.melanieracine.com/activity management

Cutting to the chase, what did they find?

Well… to quote the authors “Inconsistent with the study’s primary hypothesis, neither treatment was effective in reducing average pain or usual fatigue symptoms. However, analyses of secondary outcome measures suggest the possibility that OL-based activity pacing treatments might be more effective than EC-based treatments in improving patient function.”

I didn’t expect pain reduction, or fatigue to be altered by an activity management approach: the relationship between movement and pain is highly variable, and there are many times we’ll be happy doing something and not experience pain simply because it’s something we enjoy. At the same time, I did hope to see a difference between the two approaches in terms of overall “doing” (function). My expectation was that pain may actually increase as people begin doing more, or alternatively, that people will feel more confident that they can achieve what’s important to them in a day, and that pain intensity becomes less of a guiding factor. The authors provide some explanations: perhaps the study numbers were too low to detect a difference (ie the study was under-powered); and perhaps a brief intervention isn’t intensive enough to help change over so many different aspects of a person’s life. Or perhaps, I want to add, neither approach is terribly great and while they both have intuitive appeal, persistent pain is too complex for any single activity management approach to make much of a difference. Maybe it’s something that needs other strategies to be incorporated such as exercise, mindfulness, medications, and even scheduling pleasant events.

So where does this leave us?

I guess for me, I like to think of activity pacing as one of many different tools in my toolbox. I bring it out when I’m attempting to increase my overall activity level – such as my walking programme, where I’m slowly but gradually increasing my capabilities without giving myself a whole two weeks of DOMs! I otherwise use a more flexible activity management approach: if something is important to me, and I think I can deal with the flare-up, I’ll do it. If it’s not as important to me, or I don’t think I can deal with the flare-up, I’ll probably modify my approach. Pacing, or activity management is only one tool…

Andrews, N. E., Strong, J., & Meredith, P. J. (2012). Activity Pacing, Avoidance, Endurance, and Associations With Patient Functioning in Chronic Pain: A Systematic Review and Meta-Analysis. Archives of Physical Medicine and Rehabilitation, 93(11), 2109-2121.e2107.

Nielson, W. R., Jensen, M. P., Karsdorp, P. A., & Vlaeyen, J. W. S. (2013). Activity Pacing in Chronic Pain: Concepts, Evidence, and Future Directions. Clinical Journal of Pain, 29(5), 461-468.

Racine, M., Jensen, M. P., Harth, M., Morley-Forster, P., & Nielson, W. R. (2019). Operant Learning Versus Energy Conservation Activity Pacing Treatments in a Sample of Patients With Fibromyalgia Syndrome: A Pilot Randomized Controlled Trial. Journal of Pain, 20(4), 420–439. https://doi.org/10.1016/j.jpain.2018.09.013

Do you trust me?

Trust – something that needs to be earned, or something that is present at first… and then erodes? Or perhaps, it’s a snap judgement we make on the fly – and judge everything else about a person on that basis?

Firstly, why even discuss trustworthiness in pain rehabilitation? Well, the answer is quite clear: I don’t know how many times I’ve been asked if I can tell whether someone is faking their pain. I’ve read numerous articles on functional capacity testing – and its poor predictive validity (or completely absent investigation of such properties). I’ve had case managers tell me they have a method for testing whether someone is faking or malingering… so trustworthiness is something those in the insurance industry seem to want to test. The same kinds of questions are made by employers: how can I tell whether this person is really that bad?

When we don’t believe someone, or we think they’re exaggerating, our level of empathy for that person drops, and our tendency to question their honesty increases (Ashton-James & Nicholas, 2016; Schafer, Prkachin, Kaseweter & Williams, 2016). As a result, people who don’t fit our preconceived ideas of who should or shouldn’t deserve empathy are stigmatised (De Ruddere & Craig, 2016; Stensland & Sanders, 2018). Stigma means people may not receive adequate analegsia (Wilbers, 2015), they may present as stoic and prefer not to reveal how they are feeling (Cagle & Bunting, 2017), and this in turn may lead to further lack of acceptance of that person’s own experience.

So, how is trustworthiness formed? Swenson, Weinstein, Junghaenel and Richeimer (2019) carried out an online study of pain narratives, ie depictions of pain from the perspectives of people seeking treatment. They had 727 participants in this study, 86% (n=626) individuals with chronic pain, and 14% (n=101) having a ‘medical’ background (we don’t know whether medical = health-training). The narratives were based on actual narratives from people living with pain who had responded to the Institute of Medicine (US) call for descriptions related to obtaining care for pain. They identified three narrative characteristics: apparent pain severity, apparent frustration with care, and apparent wish for more or better pain medication. They hypothesised that those describing high levels of pain, frustration with care or a wish for more or better pain medication would be associated with lower ratings of trustworthiness, while people living with pain would give higher ratings of trustworthiness compared with medical professionals.

Participants were asked to rate each vignette on the following characteristics: depressed mood, histrionicity, stoicism, appreciativeness, hostility, and likability. Participants were also asked to assess trustworthiness using the Physician Trust in the Patient Scale (Moskowitz, Thom, Guzman, Penko, Miaskowski & Kushel, 2011).

The results? “Narratives that were rated as depressed, hostile, or histrionic were rated as significantly less trustworthy by study participants (rs=−0.25, −0.44, and−0.43, Ps < .001, respectively). In contrast, pain narratives that were rated as appreciative, stoic, or likable showed a significant and positive relationship with ratings of trustworthiness (rs=0.48, 0.36, and 0.58, Ps < .001, respectively). The observed relationships between personality and psychological characteristics and trustworthiness were similar between patient peers and clinicians.” In other words, the more distressed the narrative the less trustworthy they were rated. So much for compassion for people who are so very often not able to get answers for their pain!

“Pain narratives that expressed a low or moderate level of pain severity received significantly higher trust ratings compared to those narratives that expressed a high pain severity level (t (1,585.15)=9.97, P < .001). Similarly, pain narratives that did not express frustration with pain care received significantly higher trust ratings compared to those narratives that expressed frustration with pain care (t(1,2894.02)=2.59, P=.009).” So, grateful patients are trustworthy, as are people rating their pain as low or moderate. Finally, “when no frustration with pain care was expressed in the narrative, patient peers and clinicians gave similar ratings of trustworthiness, whereas clinicians gave lower trustworthiness ratings than patient peers when frustration with pain care was expressed in the narrative (F(1,2857.31)=7.16, P=.008).” Clinicians clearly think patients should be grateful and satisfied with their care.

Now, I can hear clinicians reading this saying “Oh but not me!” “I would never…” – yet implicit biases exist in healthcare (FitzGerald & Hurst, 2017). Implicit biases are those we have without being aware of them (Holroyd, Scaife & Stafford, 2017). This makes it really difficult to decide whether we ought to take them into account and attempt to correct them, or whether it is just something to put up with. Philosophers Holroyd, Scaife and Stafford tackle this in their paper Responsibility for implicit bias. They break the question of responsibility down to three: Does the attitude reflect badly (or well) on the agent [person], is there a fault (or credit) that can be attributed? Should the agent [person] be regarded as blameworthy for the fault she has or has demonstrated, should she bear some cost or burden (in the form of sanction or blame) for this? And finally, What forward-looking obligations do individuals have for dealing with the fault or problematic behaviour?

Arguments for and against the first question suggest that because the person isn’t aware of their bias, he or she can’t really be held to account for what they do as a result of this. However, once that bias is drawn to the person’s attention, while he or she might still not be able to alter their tendency towards being biased, there is a responsibility to recognise the unfair situation that has arisen, and do something to correct it. Now, Holroyd, Scaife and Stafford’s paper is complex, lengthy and philosophical (tautology perhaps?!), and I’ve cut to the chase – but here’s the thing: we are aware that the way we perceive a person is judged within the first few seconds of meeting them. We’re also aware that we like people who are more like us than different from us. We think people should be grateful for our help, and that they should present as calm and pleasant when they seek it.

YET – many people who live with persistent pain have spent years trying to find appropriate help for their problem. They’re often frustrated, depressed, angry perhaps, and distressed. If we recognise that the people presenting in this way are often stigmatised and judged by others as less trustworthy, I think we ought to (because we know about it) take special steps to counter our tendency to be biased. Some practical things we could do:

1. Listen for commonalities between the person and ourselves
2. Recall people who are exceptions – perhaps those who present as distressed and who pull through and develop confidence in their ability to manage
3. Listen for the unique features of this person’s narrative. Break the stereotype and look for details that make this person special.
4. Perhaps take the time to ask yourself: what would I be like if I had lived through this person’s life?
5. Spend some time with people who are experiencing persistent pain. Listen to their stories. Hear their gripes.
6. Take your time – hurried interactions tend to elicit greater implicit biases.

As we’re emphasising right now in New Zealand, as a result of the terror attack on 15th March 2019, where 50 people died and many were seriously injury, we are one.

Ashton-James, C. E., & Nicholas, M. K. (2016). Appearance of trustworthiness: an implicit source of bias in judgments of patients’ pain. Pain, 157(8), 1583-1585. doi:http://dx.doi.org/10.1097/j.pain.0000000000000595

Cagle, J., & Bunting, M. (2017). Patient reluctance to discuss pain: understanding stoicism, stigma, and other contributing factors. Journal of social work in end-of-life & palliative care, 13(1), 27-43.

De Ruddere, L., & Craig, K. D. (2016). Understanding stigma and chronic pain: a-state-of-the-art review. Pain, 157(8), 1607-1610.

FitzGerald, C., & Hurst, S. (2017). Implicit bias in healthcare professionals: a systematic review. BMC Medical Ethics, 18(1), 19. doi:10.1186/s12910-017-0179-8

Holroyd, J., Scaife, R., & Stafford, T. (2017). Responsibility for implicit bias. Philosophy Compass, 12(3), e12410. doi:10.1111/phc3.12410

Institute of Medicine (US) Committee on Advancing Pain Research, Care, and Education. Relieving Pain in America, A Blueprint for Transforming Prevention, Care, Education, and Research, Washington (DC): National Academies Press (US), 2011.

D. Moskowitz, D.H. Thom, D. Guzman, J. Penko, C. Miaskowski, M. Kushel, Is primary care providers’ trust in socially marginalized patients affected by race, J. Gen. Intern. Med. 26 (8) (2011 Mar 11) 846–851.]

Schafer, G., Prkachin, K. M., Kaseweter, K. A., & Williams, A. C. d. C. (2016). Health care providers’ judgments in chronic pain: the influence of gender and trustworthiness. Pain, 157(8), 1618-1625.

Stensland, M. L., & Sanders, S. (2018). Not so golden after all: The complexities of chronic low back pain in older adulthood. The Gerontologist, 58(5), 923-931.

Swenson, A. R., Weinstein, F. M., Junghaenel, D. U., & Richeimer, S. H. (2019). Personality and treatment-related correlates of trustworthiness: A web-survey with chronic pain narratives. Journal of Psychosomatic Research, 119, 14-19. doi:https://doi.org/10.1016/j.jpsychores.2019.01.017

Wilbers, L. E. (2015). She has a pain problem, not a pill problem: Chronic pain management, stigma, and the family—An autoethnography. Humanity & Society, 39(1), 86-111.

Always look on the bright side of life!

Anyone who is older than, say, 40 years old, should be whistling right now…

For some time now I’ve been interested in how people who cope well with pain go about their daily lives. What makes this group of people different from the ones we more often see? While I know from my own research that there’s a process to get to where living life outweighs putting all the emphasis on finding a cure (note: this doesn’t mean giving up on a cure, it just means it’s a different priority), there is some research showing that how we view a situation (either as a challenge – or not) plays a role in how well we deal with it (Lazarus & Folkman, 1984).

The theory goes something like this: resilience people view pain as a challenge and believe that they have the resources to cope with it, and as a result they experience less disability and distress.

There has been a reasonable interest in resilience in coping with persistent pain since Karoly and Ruehlman (2006) found that a small but reasonable-sized group of people report moderate to severe levels of pain intensity, but don’t report high levels of interference or emotional burden. It’s thought that instead of avoiding movements or activities that are painful, this group of people may feel fear – but go on to “confront” or at least willingly experience pain as part of their recovery. What hasn’t been as well-understood is whether resilience is associated with perceiving pain as a challenge, and therefore people are more likely to do things that may hurt, or whether people believe they can face the demands of experiencing pain (ie they have self efficacy for managing pain) and this is the path by which they get on with life.

This study was carried out in mainland China, and is for this reason alone, is an interesting study (most of our understanding about pain comes from the US, Canada, Australia and the UK). China also faces an enormous burden from people being disabled by chronic pain, so this is a good step forward to understanding what might support living well with pain in this highly populated country.

The study is by Shuanghong Chen and Todd Jackson, and published last year in the journal Rehabilitation Psychology. The authors recruited 307 Chinese adults with chronic back pain (189 women, 118 men), and asked them to complete a batch of questionnaires: Connor-Davidson Resilience Scale (Chinese); Pain Appraisal Inventory (Short-form) Challenge; Pain Self-Efficacy Questionnaire; The catastrophising subscale of the Coping Strategies Questionnaire, the Chronic Pain Grade; The Multidimensional Pain Inventory-Screening (Affective Distress) subscale; and the Center for Epidemiologic Studies Depression Scale. Participants were recruited from large residential settings close to the university and two local hospitals, and participants needed to be at least 18 years old with back pain of at least 3 months duration. All the questionnaires were translated into Mandarin using back-translation. This was a cross-sectional design, so all the measures were taken at one time, and analysis performed across the group. It’s not possible, therefore, to determine causal relations, and all the calculations were carried out using structural equation modeling, therefore correlational relationships only.

What did they find out?

High resilience levels were related to elevations in primary appraisals of pain as a challenge, and in turn, higher resilience and challenge appraisal scores were each related to higher scores on the secondary appraisal measure of pain self-efficacy beliefs. Those with high scores on resilience and pain self-efficacy tended to score lower on the secondary appraisal measure of pain catastrophising. When analysing the path it was found that challenge appraisals didn’t reach significance with catastrophising or pain-related disability (such as scores on Chronic Pain Grade, Affective Distress, or Depression). Higher scores on resilience and pain self-efficacy as well as reductions in pain catastrophising were associated with lower overall dysfunction scores (Chronic Pain Grade, Affective Distress, and Depression).

Interestingly, the authors tested to see whether pain self-efficacy and pain catastrophising had a bidirectional relationship with one another – they found that yes, this did have a good fit with the data but the resilience-catastrophising path was strong than the path in the original model, while the bidirectional self-efficacy-catastrophising path was slightly less strongly associated compare with the other model.

What does all this mean for us?

Well it seems that while we attend to negative features of a person’s presentation, from this study it looks like the relationship between positive aspects (such as not thinking of pain as an incredibly negative thing (catastrophising) and believing that yes I do have resources sufficient to cope with pain) is more predictive of outcomes than simply looking at catastrophising alone. However – pain self-efficacy and pain catastrophising and poorer coping have been found significant, while general resilience (appraising pain itself as a challenge, or not) and appraising pain itself as a challenge is less strongly associated. What this suggests is that increasing a person’s beliefs that they have the capability to cope (ie self-efficacy) despite pain needs to be a priority in pain rehabilitation.

To me this is an important finding. When we as therapists attribute change in function to either less pain, or to our efforts (or the treatments, eg injections, pills, special exercises, super-duper techniques that we use), we fail to foster or support self-efficacy. Self-efficacy is a slippery concept: the measure indicates confidence to engage in activities despite pain. If our treatments focus on reducing pain intensity and don’t support the person being able to do things despite their pain, we’re likely not helping them become more confident, especially in the future.

This doesn’t mean we should tell people to “suck it up, Buttercup”. It does mean we should help people identify the strategies they have (or can develop) to be able to continue with activity in the face of pain fluctuations. Of course this means we need to be comfortable with the idea that it’s OK to do things despite pain! If we still hold a sneaky suspicion that it’s not OK to be sore and do things, we’re likely to inadvertently (or perhaps overtly) encourage people to ease up, back off, or generally stop when they’re sore. Asking people how sore they are at each treatment is likely not to increase confidence that it’s OK to move. Commiserating over how painful it is and how tough it is may be unhelpful!

What can we do instead?

I think we can draw a lot from motivational interviewing. No, not the stages of change, but the part where we acknowledge that despite it being difficult, the person did something that moved them towards a more positive choice. What this might look like is “Hey you had a tough week, but it’s fantastic that you made it here today so we can look at what you carried on with”. It might include “While it’s been a flare-up week for you, you were still aware of your goals and had a go”. Or “Look at how you stayed the course despite the bumps in the road”.

Sticking with the idea that actions, or habits count more than results can be useful, because we’re helping people build long-term lifestyle changes that will sustain them over time. Yes, results are really cool and we want to see them (so don’t stop recording wins!), but at the same time, it’s vital we celebrate the daily choices a person makes to keep going and doing.

I think we can also help build self-efficacy by drawing on pain heroes. People who have maintained a good lifestyle despite their pain. Celebrating those who are grinding through, even though they have tough times. Perhaps other people in the clinic who are also managing pain. From self-efficacy research we know that vicarious learning (watching how others perform in the same situation) is one of the ways we boost our confidence to succeed. Group-work may be a useful approach for encouraging people to know they’re not alone, they can make progress, and that they’re doing OK.

So…. looking on the bright side of life doesn’t mean ignoring challenges, but it does mean viewing them as challenges rather than insurmountable obstacles. Our approach to pain – is it something to get rid of, or is it something to learn from and something we can manage – may give people encouragement to persist, or it may undermine coping. What’s your view?

Chen, S., & Jackson, T. (2018). Pain Beliefs Mediate Relations Between General Resilience and Dysfunction From Chronic Back Pain. Rehabilitation Psychology, 63(4), 604–611.

Karoly, P., & Ruehlman, L. S. (2006). Psychological “resilience” and its correlates in chronic pain: Findings from a national community sample. Pain, 123, 90–97. http://dx.doi.org/10.1016/j.pain.2006.02.014

Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer.