The demise of practical pain management

Cast your mind back to the last time you decided to create a new habit. It might have been to eat more healthy food, to do daily mindfulness, to go for a walk each day. Something you chose, something you decided when, where and how you did it, something that you thought would be a great addition to your routine.

How did it go? How long did it take to become a habit you didn’t need to deliberately think about? How did you organise the rest of your life to create room for this new habit? What did other people say about you doing this?

While we all know a reasonable amount about motivation for change – importance and confidence being the two major drivers – and as clinicians most of us are in the business of helping people to make changes that we hope will become habitual, have you ever stopped to think about what we ask people with pain to do?

It’s not just “do some exercise”, it’s often “and some mindfulness”, and “you could probably eat more healthily”, and “organise your activities so you can pace them out” – and “take these medications at this and this time”, “attend these appointments”, “think about things differently”… the list continues.

Now, for a moment, cast your mind back to the last few research papers you read, maybe even a textbook of pain management, the most recent course you went on, the latest CPD.

Was there anything at all on how people with pain integrate all of these things into their life?

Lewis et al., (2019) reviewed inpatient pain management programmes over 5 decades. They found 104 studies spanning from 1970’s to 2010’s. Unsurprisingly the content, format and clinicians involved in these programmes has changed – but you might be surprised at some other changes… Lewis and colleagues found that physiotherapy (primarily exercise) remained at similar levels over time, but programmes gradually became less operant conditioning-based (ie behavioural reinforcement with a focus on changing behaviour) to become more cognitive behavioural (working with thoughts and beliefs, often without necessarily including real world behaviour change), with reduced emphasis on reducing medications and less family involvement. While the same numbers of physiotherapists, doctors and psychologists remain, nurses and occupational therapists are decreasingly involved.

What’s the problem with this? Isn’t this what the research tells us is “evidence-based”?

Let’s think for a moment about effect sizes in chronic pain. They’re small across all modalities when we look at outcomes across a group. There are some gaps in our understanding of what, and how, pain management programmes “work”. We know that movement is a good thing – but effect sizes are small. We don’t know how many people maintain their exercise programmes even six months after discharge. We also don’t know how well movements taught in a clinic transfer into daily life contexts, especially where fear and avoidance are being targeted. We don’t know who, if anyone, carries on using mindfulness, cognitive strategies such as thought reframing or reality testing, and we don’t know many people leave a programme thinking they’ve been told their pain is “in their head” (though, to be fair, this is something we’ve had problems with for at least the 30 years I’ve been doing this work!).

So while assessment might be more “holistic” and outcomes more likely to be about quality of life and disability, the minutiae of how people with persistent pain integrate and synthesise what they learn in pain management programmes into their own life contexts is invisible. It’s not even part of many pain management programmes.

We could turn to the qualitative literature for some insights. Mathias et al., (2014) interviewed people two weeks after completing a programme. Munday et al., (2021) selected people toward the end of a three week programme. Farr et al., (2021) talked to people up to 24 months after a programme – but in the context of a peer-led support group (which, by the way, I think are marvellous!), Penney et al., (2019) interviewed veterans to identify outcomes, barriers and facilitators to ongoing pain management – but don’t indicate how long after a programme their participants were interviewed. So we don’t know what pain management strategies “stick” and remain in use, integrated into daily life.

So many questions come up for me! Do pain questionnaires measure what matters to people? Can a 0 – 10 response on an item of the Pain Self Efficacy Questionnaire (Nicholas, 2007) represent how someone draws on, and uses, coping strategies to do what matters? Does a response on the 0 – 10 Pain Disability Index (Tait, Chibnall & Krause, 1990) adequately capture how a person does their daily life? If we help people “do exercise” but they don’t continue with these exercises once they resume their own life – what is the point? Why are family members not included any more? How does this fit with New Zealand’s Te Whare Tapa Whā model of health?

The problem/s?

The health profession that entirely focuses on helping people do what matters in their life (occupational therapists use occupation or daily doing as both therapy and outcome) has had trouble describing our contribution. We don’t, as a profession, fit well into a medical model of health. We focus almost exclusively on the “Function” and “Participation” parts of the ICF – and we focus on daily life contexts. Researching our contribution using RCTs is difficult because we offer unique solutions that help this person and their whanau in their own context, and no-one’s daily life looks the same as another’s. We are about meaning, expressing individuality and self concept through the way we do our lives. This doesn’t lend itself to a clinic-based practice, or a hospital, or a standardised treatment, or treatment algorithms. Our contribution has been eroded over time. Very few pain management programmes incorporate occupational therapy – most are physiotherapy + psychology. This is especially noticeable in NZs ACC community pain management programmes.

Pain management is often based on the assumption that if a person is told what to do, perhaps gets to do it in a clinic with a therapist, this is sufficient. And for some people, especially those who view themselves in the same way as therapists (ie, individual responsibility), and people with the psychological flexibility and internal resources to just do it, they may do quite well. BUT consider the people we know who don’t. People from different cultures, lower socio-economic living, neurodiverse, those with competing values, lack of confidence, lack of personal agency – these are the people who don’t do as well in all of our healthcare, and especially those programmes relying on “self-management”.

Programmes also assume that what is done in a clinic can readily transfer to daily life. Clinics are contained, often purpose-built, usually regulated, and have a therapist handy. People are there for the one purpose. Daily life, on the other hand, is highly variable, holds multiple competing demands, other people question what you’re doing and why, is quite chaotic and messy. And there is no therapist. How does a person decide what to do, when, how, and why?

Remember your challenges with developing one new habit. How you had to stake a claim in your own life to create space for this new activity. How you sometimes forgot. How a change in one part of your life undermined you doing this new thing. How this was only one change. Only one. And what do we ask people with pain to do? And we don’t even bother to find out what is still being done 12 months down the track.

Practical pain management is about helping someone work out how to organise their week so they can add in this new exercise programme that might help, alongside having time and energy to be a good Mum, pick the kids up from school, sort the washing, do the groceries, oh and the car needs a new warrant, and I need a new prescription for my meds.

It’s about working out the best time of day to do some mindfulness – when will it do the most good? when can I fit it in? how do I deal with my partner wanting to get out and start the day while I’m meditating?

It’s about communicating to my boss, my colleagues and my customers that I need to get up and walk around – and maybe say no to some new projects at the moment. Perhaps I need to be more assertive about my own needs. Perhaps I’m worried I’ll lose my job because I need to make these changes….

In the rush to streamline pain management to the bare bones, I wonder if we have forgotten who it is all about. He tangata, he tangata, he tangata – it is people, it is people, it is people. Let’s remember that coping strategies and exercise and all the psychological approaches need to be continued for months, and even years. And this means helping people work out what our suggestions look like in their own life. Let’s not omit the profession that puts people and what their daily life looks like as its reason for being.

Tait, R. C., Chibnall, J. T., & Krause, S. (1990). The pain disability index: psychometric properties. Pain, 40(2), 171-182.

Farr, M., Brant, H., Patel, R., Linton, M. J., Ambler, N., Vyas, S., Wedge, H., Watkins, S., & Horwood, J. (2021, Dec 11). Experiences of Patient-Led Chronic Pain Peer Support Groups After Pain Management Programs: A Qualitative Study. Pain Medicine, 22(12), 2884-2895. https://doi.org/10.1093/pm/pnab189

Lewis, G. N., Bean, D., & Mowat, R. (2019, Sep). How Have Chronic Pain Management Programs Progressed? A Mapping Review. Pain Practice, 19(7), 767-784. https://doi.org/10.1111/papr.12805

Mathias, B., Parry-Jones, B., & Huws, J. C. (2014). Individual experiences of an acceptance-based pain management programme: An interpretative phenomenological analysis. Psychology & Health, 29(3), 279-296. https://doi.org/10.1080/08870446.2013.845667

Nicholas, M. K. (2007, Feb). The pain self-efficacy questionnaire: Taking pain into account. European Journal of Pain, 11(2), 153-163. https://doi.org/http://dx.doi.org/10.1016/j.ejpain.2005.12.008

Penney, L. S., & Haro, E. (2019). Qualitative evaluation of an interdisciplinary chronic pain intervention: outcomes and barriers and facilitators to ongoing pain management. Journal of Pain Research, 12, 865-878. https://doi.org/10.2147/JPR.S185652

Why do clinicians fear telling people their pain may persist?

There is a big void in our understanding of interactions between clinicians and people who live with persistent pain, and that vacuum is about how people learn that their pain is not going anywhere soon. Recently I searched for qualitative research examining the conversations between clinicians and patients at the moment of diagnosis: that moment when a clinician says “I’m sorry, but you’ve tried all there is to try, and it looks like your pain might not respond”. Or it might be “We’ve found out what your problem is, but we know that right now, there aren’t any very effective treatments”.

Oddly enough – or perhaps not – this is incredibly difficult to find. I wasn’t able to locate any specific studies (though if someone else has found some I’d be very happy to get a list!). The closest I found was a synthesis of qualitative studies by Toye, Seers and Barker (2017) looking at the experiences of healthcare professionals while treating people with persistent pain. In it, the authors identify six themes that seemed apparent after synthesising the included studies:

• Skepticism in medicine where a person is ill – but diagnosis is difficult. The authors point to the strong culture within medicine in which subjectivity is valued less (they say “shunned”) than objectivity. But of course, pain is always subjective.
• Clinicians have to “do the work” of reconciling the person they see in front of them and the absence of objective clinical findings – this is difficult when a biomedical model is preferred over a biopsychosocial model. (I could add here that unless that biopsychosocial model is truly integrated as a whole, it could turn into a dichotomous not “bio” then “psychosocial” but that’s another discussion)…
• Clinicians also have to work in a space where either their clinical knowledge is not relevant, or it’s actively unhelpful, meanwhile trying to help a person who wants and needs certainty and support.
• Clinicians also have a dual duty: responding to the person who is distressed while also remaining aware that some of what the person wants may not be helpful or good – with some of the concerns being also about the healthcare system, and using investigations that are unnecessary and wasteful.
• As a result of these multiple demands on clinical balance, clinicians may bear a personal cost in terms of emotional energy, empathy and perhaps as a result find it difficult to want to engage with people for whom they feel the “work” will be hard and unrewarding.
• Ultimately, clinicians working in this field develop a “craft of pain management” which they believe defies algorithms and categorisations, and instead is an ongoing interplay of call and response.

I can completely understand these challenges. If clinicians “measures of success” are resolution or a problem, or at least effective management of a problem, the difficulty in most instances of persistent neuropathic or nociplastic pain is the limited number of medications, and their relatively poor effectiveness. And other approaches (exercise, coping strategies etc) are equally limited. So – we might need to establish a different measure of success, and that’s hard.

In the absence of research discussing clinician’s ways of giving a diagnosis, I asked people with persistent pain on a social media group to give me their account of how they were given the news about persistent pain. The themes that emerged were:

• No-one told me my pain would persist.
• Despite surrounding myself with a broad multidisciplinary team, no-one broached the subject.
• Pointing to the presence of supposed pathology – “you’ll need surgery”
• “what we’re doing isn’t helping” – despite best efforts.
• Being put into a category of people who can’t be helped.
• No-one showed me how to live with this pain
• Being told casually as if it were no big deal – this shouldn’t have a big impact on you.
• I was told there’s no cure, no effective treatment and the idea is to make life tolerable but I will probably never be pain free.
• The diagnosis of a disease was given – but I wasn’t told it was the reason I hurt.
• You have chronic pain and there’s not likely to be a cure in your lifetime.

In my interactions with people online, both people with pain and those hoping to treat, I’ve heard a number of opinions: we should never “give up” on pain reduction; we don’t want to “kill hope”; there’s always something we can do …

Here are a few questions:

• When do we admit we don’t have a 100% success rate for treating persistent pain?
• Given that people with pain often put their lives on hold until there is a diagnosis and treatment plan (usually aimed at pain reduction and/or cure) – how long does someone need to put their life on hold until we acknowledge that the cost of waiting outweighs the uncertain benefits of pain reduction?
• Is this a decision we as clinicians should make? If it’s a collaborative decision, do we provide people living with pain an unbiased and neutral view of their options?
• Fundamentally, do we fear living with pain ourselves, and does this in part fuel our desire to keep treating?
• What do you think it’s like for a person living with pain to never be told that this is reality? Because people will blame themselves (for not trying hard enough), blame their health professionals (for not looking hard enough), blame the system (for not funding enough) – when actually there is no secret stash of treatments for people who are “good enough” to get them.
• If someone is told “chances are high this won’t resolve quickly, if at all” does this mean nothing will ever change? Or simply that we’re giving permission to ourselves and the person to find ways to have a meaningful life with pain? What if we conveyed the reality that currently there may not be a way to reduce pain, but this doesn’t mean it will be forever – and in the meantime we can work together to create a life that is fulfilling?

I guess the sad thing for me is that even though we’ve had persistent pain management programmes available in various forms since the 1970’s, with the flush particularly evident in the 1990’s and waning ever since, people are still not given the opportunity to have good support while learning how to live well with pain.

Because until we have at least a 90% success rate with our treatments for persistent pain, I think we need to be humble and admit these approaches are still needed.

Toye, F., Seers, K., & Barker, K. L. (2017). Meta-ethnography to understand healthcare professionals’ experience of treating adults with chronic non-malignant pain. BMJ Open, 7(12), e018411. doi:10.1136/bmjopen-2017-018411

Assessing problems with sleep and pain – ii

Last week I wrote about my approach to assessing sleep problems in those with persistent pain. As an ex-insomniac I’ve spent a while learning about sleep so I can understand what’s going on, and why sleep can be such a problem. In this week’s post I want to dig a little deeper into what’s going on with poor sleep, as well as some of the unique features of sleep in people experiencing persistent pain.

Having reviewed the five main areas that are fundamental (and can/should be assessed by anyone working with people who experience persistent pain), the next area I want to look at with people is mood. There are two primary psychopathological contributors to poor sleep: the first we’ve dealt with last week (Question 4 – what’s going through your mind…) which is by far and away the most common initiator and maintainer of insomnia, and it doesn’t even need to be a diagnosable anxiety disorder! The second, you’ll probably have guessed, is depression.

Depression is common in people with both rotten sleep and ongoing pain (Boakye, Olechowski, Rashiq, Verrier, Kerr, Witmans et al, 2016), and there are some suggestions that pain and depression may be related and similar neurobiological processes may be involved for both (increased limbic activity being one of them). In depression, there is increased activity in the HPA Axis, reduced BDNF (brain-derived neurotrophic factor), and reduced 5HT with increased pro-inflammatory cytokines . In persistent pain, there may be activity in the HPA Axis, there is certainly reduced BDNF except in the spinal cord, and reduced 5HT, along with increased pro-inflammatory cytokines. And in sleep disturbances there is also increased activity in the HPA Axis, redced BDNF, reduced 5HT and guess what… increased pro-inflammatory cytokines. And all three interact with one another so that if you happen to be depressed, you’re more likely to experience pain that goes on, and your sleep will also reduce your mood and increase your pain. And the reverse. All very messy indeed!.

What this means is that assessing for low mood and the impact on sleep is important – if someone’s describing waking well before they usually do, in the wee small hours (anywhere from 3 – 5am if they usually wake at 7.00am) I’m ready to screen for low mood. To be honest I always assess for that anyway! Depression is also associated with low motivation and loss of “get up and go” so this is likely to interact with poor sleep, creating a very tired person.

There are three other very important aspects of sleep I like to assess for: sleep apnoea, where someone stops breathing for seconds to minutes at a time, often snorting awake, and this may be associated with snoring and daytime sleepiness. Often the person won’t be aware of their sleep apnoea, so it can be helpful for a bed-partner to let you know whether this is a feature of your patient’s sleep.

The next are a group of movement disorders of sleep, many of which are associated with the third area I assess, which are medications.

Movement disorders of sleep include restless leg syndrome – that feeling of absolutely having to move the legs, usually at night, and relieved by getting up to walk around, but in doing so, making it difficult to sleep. Another is periodic limb movement disorder of sleep, which can be every 5 – 30 seconds of leg twitching all night long, and in some cases, whole body twitching though this is less frequent and less rhythmic. This latter problem may not be noticed by the person – but their bed-mate will know about it! – and this problem may be associated with both sleep apnoea and restless leg, AND some doses of antidepressants. Another common contributor to these problems is low iron levels – worth checking both iron and medications!

Finally with medications, I like to understand not only what the person is taking, but also when they’re taking them. Several points are important here: some medications are usually sedating such as tricyclic antidepressants but in some people nortriptyline can paradoxically increase alertness! If that’s the case, timing the dose is really important and should be discussed with either the prescribing doctor, or a clinical pharmacist. Opioids depress respiration (ie slow breathing down) so can be problematic if the person has sleep apnoea AND is taking opioids, the drive to inhale may be less, causing more frequent and deeper periods without breathing normally. For restless legs and periodic limb movement disorder, some antidepressants (venlafaxine is one of them) in high doses can cause the twitching and once the dose is reduced, this fades away, at least a bit.  There is a very small amount of research suggesting that NSAIDs can influence sleep quality in some people also.

The effects of poor sleep are many: anything from micro-sleeps during the day (problematic while driving or operating machinery!), to more irritability, sluggish responses, less concentration and more difficulty solving problems. Pain is associated with more frequent micro-wakenings during the night (Bjurstrom & Irwin, 2016) but findings with respect to whether deep sleep, REM sleep or light sleep were consistently more affected weren’t clear.

Having completed my assessment, more or less, I can also use a few pen and paper measures: Wolff’s Morning Questions (Wolff, 1974), Kryger’s Subjective Measurements (1991), Pittsburgh Sleep Quality Index (Bysse, Reynolds, Monk et al, 1989) and the Sleep Disturbance Questionnaire (Domino, Blair,& Bridges, 1984) are all useful. Speaking to the partner is an excellent idea because I don’t know about you but I never snore but my partner swears I do! Who do you believe?!

People experiencing insomnia are not very reliable when describing their own sleep habits – we’re terrible at noticing when we’re actually asleep or awake in those early stages of sleep, so we typically think we’ve slept less than we actually have. We also do a whole lot of things to avoid not sleeping – and these can actually prolong and extend our sleeplessness!

We’ll discuss what to do about the factors you may have identified in your sleep assessment in next week’s instalment, but you can rest assured it’s not crucial for you to do anything yourself about some things. For example, if someone has sleep apnoea, referring for a sleep study is important, but not something YOU need to do! But please make sure a referral is suggested to someone who can make it happen. Similarly with medications and sleep movement disorders, it’s not something you should tackle on your own – please discuss managing these with a specialist sleep consultant, psychiatrist, or the person’s own GP. Mood problems – treat as you would any time you find someone with a mood problem.

Next week – off to the Land of Nod: A roadmap?!

 

Boakye, P. A., Olechowski, C., Rashiq, S., Verrier, M. J., Kerr, B., Witmans, M., . . . Dick, B. D. (2016). A critical review of neurobiological factors involved in the interactions between chronic pain, depression, and sleep disruption. The Clinical Journal of Pain, 32(4), 327-336.

Buysse DJ, Reynolds CF 3rd, Monk TH, et al. The Pittsburgh Sleep Quality Index: a new instrument for psychiatric practice and research. Psychiatry Res 1989; 28(2):193–213.

Domino G, Blair G, Bridges A. Subjective assessment of sleep by Sleep Questionnaire. Percept Mot Skills 1984;59(1):163–70.

Kryger MH, Steljes D, Pouliot Z, et al. Subjective versus objective evaluation of hypnotic efficacy: experience with zolpidem. Sleep 1991;14(5):399–407.

Moul DE, Hall M, Pilkonis PA, et al. Self-report measures of insomnia in adults: rationales, choices, and needs. Sleep Medicine Reviews, 2004;8(3):177–98.

Wolff BB. Evaluation of hypnotics in outpatients with insomnia using a questionnaire and a self-rating technique. Clin Pharmacol Ther 1974;15(2):130–40.

Assessing problems with sleep & persistent pain

Problems with sleep affect most of us from time to time. We know we might find it difficult to get off to sleep because of a busy mind, a different bedroom, changes to our schedule – but for most of us, sleep returns to our normal fairly quickly. For some of us, though, sleep problems continue for weeks, months or even years. And for people living with persistent pain, sleep can be one of the most difficult things to deal with, yet it’s also one of the most common (McCracken & Iverson, 2002). Studies of sleep problems in people with fibromyalgia show abnormal sleep continuity as well as changes in sleep architecture – this looks like increased number of times waking, a reduced amount of slow wave sleep and an abnormal alpha wave intrusion in non rapid eye movement, termed alpha-delta sleep (Dauvilliers & Touchon, 2001). People with fibromyalgia may also experience primary sleep disorder such as sleep apnoea or periodic leg movements during sleep.

The effect of rotten sleep is quite clear: pain increases the day following a disrupted night’s sleep, while high levels of pain on one day has less of an impact on subsequent sleep – but if you’ve been sleeping poorly for a while, all of this becomes something of a blur (Johnson, Weber, McCrae & Craggs, 2017; Slavish, Graham-Engeland, Martire & Smyth, 2017)! When we add in the effects of poor sleep on daily activity, and begin to unpack the relationships between sleep, pain and mood (Goerlitz, Sturgeron, Mackey & Darnell, 2017) well it’s a bit of a complicated matter, and one that I think we need to address when someone comes in for help with their pain.

Assessing unrefreshing sleep or poor sleep can be a reasonably straightforward process, but it needs to be carried out systematically. The event/s that initiate poor sleep may be very different from the events that maintain poor sleep, and while it’s interesting to know what started the sleep difficulties – in the end it’s possibly more important to work out what’s maintaining it.

The following is my attempt to outline what I look for when I’m discussing sleep with someone.

1. Is sleep really a problem? Sounds a bit odd, but some people have a strong belief that they need a certain number of hours of sleep a night, and when they’re not getting that magical number, it can be quite worrying – and actually kick off a sleep problem!

• My key question here is do you wake feeling like you’ve had a good sleep? The number of hours of sleep is irrelevant, to a large extent, if you wake up feeling refreshed. If the person I’m talking to wakes up feeling OK I quickly swing into trying to understand why they’re worried about their sleep – and reassuring them that having a certain sleep duration is not fixed. In fact, sleep length changes over time – remember when you were a kid and slept for hours and hours? And when you were a teen and sleep in until midday if you could, but stayed up most of the night? These are pretty normal changes in pattern and nothing to worry about.

If you don’t feel refreshed, then I dig a little deeper…

2. What’s your sleep routine? This is about finding out the time someone goes to bed, how long it takes to fall asleep, what time a person wakes up, and gets up. I’ll also ask about the pre-bedtime routine: what’s the evening routine like? when do the screens go off? what’s the last drink of the evening? what’s the bedroom environment like?

• I’m looking for a consistent bedtime at around the same time each night, a “wind down” ritual where the same things happen each night to prime the mind for sleep. I’m also looking for factors that might make it more difficult to fall asleep once in bed – screen time (devices, laptops, TV), dealing with worries, solving problems, having arguments, difficulty getting comfortable.
• I’m also looking for a consistent wake up time, and whether the person gets out of bed then – or lies in bed and maybe falls asleep again…
• A comfortable room temperature, a dark room, relatively little noise: all of these very basic things help keep bed for sleep (and sex) but not for much else.

The reason these basic “sleep hygiene” factors help is that our sleep pattern is malleable. It changes depending on environmental factors like light, noise and temperature. This is why we end up having jetlag – it takes a little while to adjust to the new daily light patterns (especially when you travel from Christchurch, NZ to somewhere like Norway!). Our body temperature drops during the night, our digestive processes slow down (that’s why we tend not to do “number twos” at night) and why we pee a lot less at night than during the day. Setting up a consistent routine helps us retain these habits and “teach” the mind/body to sleep at the correct time.

3. What substances do you use? I’m interested in the usual suspects: caffeine (not only coffee, but tea, energy drinks, dark chocolate), but also alcohol, the timing of medications, and that late night snack.

• When sleep onset is a bit fragile it’s probably best not to have coffee and allied substances after mid-afternoon, and for some people (like me!) it’s best not to have them after lunch.
• Medications for persistent pain are often sedating, so people need to know how to use this side effect for the best – and that often means taking medications earlier than first thought.
• It also means for us, recognising that some medications alter sleep architecture (particularly meds given for, paradoxically, insomnia!). Alcohol might help people get to sleep but it changes the sleep architecture, preventing you from falling into that deepest sleep phase – and waking you up to pee halfway through the night, if you don’t do that already!
• I also check whether people are smokers, and if they are, whether they wake in the morning absolutely gasping for a smoke, or whether they smoke during the night. Nicotine withdrawal can keep someone awake during those brief periods before and after dreaming sleep, so may need to be managed with patches.
• Food is also something I check – snacks at midnight are the stuff of school stories, but can become a learned behaviour that we associate with being awake at that time, and maintain disrupted sleep. Maybe a mid-evening protein-based snack is a better option.

4. What’s going through your mind (or what’s your mind telling you) about your sleep? Having hopefully dealt with the basics of sleep hygiene (though I haven’t included exercise yet – that’s coming!), I’m keen to understand the person’s mind chatter about their sleep.

• Worries, rumination and attempts at problem-solving (yes I’ve solved the problem of world peace!) can all keep us from falling asleep. What we do about those thoughts depends on the sleep management approach we’re using.
• Often, the worries are actually worries about not sleeping – that paradoxically keep us from falling asleep! Feeling bothered about “how am I going to cope tomorrow if I don’t sleep”, or “I’m going to be so tired tomorrow, I know I won’t manage” are really common.
• Along with worries about not sleeping, every other unsolved problem seems to pop up courtesy of your mind – this can happen because the person is too busy during the day to stop and ponder (and it’s quiet at night… fewer distractions!) so it’s worth finding out what is going through the person’s mind and dealing with those issues.

5. What’s your pattern of sleeping through the night? This is about the pattern of arousals – when, how long for, what the person does during these times.

• Some understanding of normal sleep architecture is useful here so you can help the person understand why waking just before/just after dreams occurs.
• Reviewing the habits at these times helps to understand the factors that maintains being awake at the wrong times! Waking briefly but without being aware of it is normal, but when internal or external factors intrude during lighter periods of sleep, we become more aware of being awake and can begin to do things that keep us awake, like watching TV, turning the radio on, having a snack, worrying.

To be continued…

These are some of the very fundamentals of assessing sleep problems. Next week I’ll review some more – and the week after look at strategies that can help!

 

Dauvilliers, Y., & Touchon, J. (2001). Le sommeil du fibromyalgique : Revue des données cliniques et polygraphiques (sleep in fibromyalgia patients: Clinical and polysomnography pattern.). Neurophysiologie Clinique/Clinical Neurophysiology, 31(1), 18-33. doi:https://doi.org/10.1016/S0987-7053(00)00240-9

Goerlitz, D., Sturgeron, J., Mackey, S., & Darnall, B. (2017). (395) sleep quality and positive affect as mediators of daily relationship between pain intensity and physical activity. The Journal of Pain, 18(4), S73.

Johnson, M., Weber, J., McCrae, C., & Craggs, J. (2017). (397) the catch 22 of insomnia and chronic pain: Exploring how insomnia and sleep impact the neural correlates of chronic pain. The Journal of Pain, 18(4), S73-S74.

McCracken, L. M., & Iverson, G. L. (2002). Disrupted sleep patterns and daily functioning in patients with chronic pain. Pain Research & Management, 7(2), 75-79.

Slavish, D., Graham-Engeland, J., Martire, L., & Smyth, J. (2017). (394) bidirectional associations between daily pain, affect, and sleep quality in young adults with and without chronic back pain. The Journal of Pain, 18(4), S73.

Clinical reasoning in pain – emotions

The current definition of pain includes the words “unpleasant sensory and emotional experience” so we would be surprised if we encountered a person with pain who wasn’t feeling some sort of negative emotion, am I right? Yet… when we look at common pain assessments used for low back pain, items about emotions or worries are almost always included as indicators of negative outcomes (for example, STarTBack – Worrying thoughts have been going through my mind a lot of the time, I feel that my back pain is terrible and it’s never going to get any better, In general I have not enjoyed all the things I used to enjoy). And while the screening questionnaires have been validated, particularly for predictive validity (ie higher scores obtained on these measures are associated with poorer outcomes), I wonder how much we know, or think we know, about the relationship between emotions and pain. Perhaps its time for a quick review…

Firstly, let’s define emotions (seems easy!) “Emotions are multicomponent phenomena; (2) emotions are two-step processes involving emotion elicitation mechanisms that produce emotional responses; (3) emotions have relevant objects; and (4) emotions have a brief duration.” (Sander, 2013). There are thought to be six evolutionarily shaped basic emotions such as joy, fear, anger, sadness, disgust, and surprise (Ekman, 1992); but as usual there are complications to this because emotions are also examined in terms of their valence – negative or positive – and arousal (similar to intensity, but in terms of how much our physiology gets excited).

There are two main brain areas involved in processing both pain and unpleasant stimuli in general are the amygdala and the prefrontal cortex. These areas don’t exclusively deal with pain but with stimuli that are especially salient to people (remember last week’s post?), and researchers are still arguing over whether particular areas are responsible for certain emotions, or whether “emotions emerge when people make meaning out of sensory input from the body and from the world using knowledge of prior experience” based on basic psychological operations that are not specific to emotions (Lindquist et al., 2012, p. 129) . I’m quoting from an excellent book “The neuroscience of pain, stress and emotions” by Al, M. Absi, M.A. Flaten, and M. Rogers.

Now researchers have, for years, been interested in the effects of emotions on pain – there is an enormous body of literature but luckily some good reviews – see Bushnell et al., 2013; Roy, 2015 ;  Wiech and Tracey, 2009. What this research shows, essentially, is that pain is reduced by positive emotions, and increased by negative emotions. Now we need to be somewhat cautious about over-interpreting these results because they’re mainly conducted in experimental designs with acute experimental pain – people are shown pictures that elicit certain emotions, then poked or zapped, and asked to rate their pain (and their emotions, usually). It’s thought that the way these emotions influence pain is via our descending inhibitory pathways. Now the situation with real people experiencing pain that is not experimentally administered is probably slightly different – a lot more salient, a lot more worrying, and far less controlled. Nevertheless it’s worth knowing that when you’re feeling down, you’re likely to rate your pain more highly. If the emotion-eliciting stimuli are particularly arousing (ie they’re REALLY interesting) then the effect on pain ratings is greater. Experimenters also found pain reduces responses to pleasant stimuli, but there isn’t such a strong relationship with negative stimuli.

The valence (positiveness or negativeness – if that’s a word LOL) activates motivational systems either pleasant = appetitive, or unpleasant = defensive. Arousal or alertness gives us a clue as to how much motivation we have to either move towards or away from the stimulus. The degree of arousal affects our pain experience – so the more negative and angry we are, we rate our pain more highly; while the happier and jollier we are, we rate our pain as less intense. BUT, as for most things in pain, it’s complex – so once we get more than moderately angry/alert/aroused, the less we experience pain. The diagram below shows this kind of relationship – from the same book I quoted above (it’s worth getting!).

Does this mean we should freak people out so they experience less pain? Don’t be dumb! Being that alert is really exhausting. But what this diagram can explain is why some people, when they’re first attending therapy and are asked to do something out of the ordinary and just so slightly threatening (like lifting weights, or jumping on a treadmill) might report higher pain intensity – because we’ve caught them at the moderate arousal level where pain is facilitated.

Clinically, what this information means is that if we’re hoping to improve someone’s pain via pleasant or positive emotions, we’d better make sure they’re fairly high energy/arousing – a hilarious comedy perhaps – because lower intensity pleasure doesn’t affect pain much.

We should, at all costs, avoid eliciting fear and worry, or anger in the people we treat – because this increases pain intensity. This means giving people time to get used to our setting, what we’re asking them to do, and the intensity of whatever activity we’re going to do with them. In graded exposure, we should give people skills in mindfulness well before we begin doing the exposure component – because it’s likely to evoke higher than usual pain intensity if they can’t “be with” the increased anxiety that emerges during this kind of treatment.

And finally, if someone is experiencing anger, depression, sadness or anxiety – this is a normal psychological reaction integral to our experience of pain. It’s not necessarily pathological – though it probably increases the pain intensity the person reports.

I think we could promote far more scheduling pleasurable experiences as a routine part of therapy. What makes people smile, feel joy, have a good belly laugh? When was the last time they watched a comedy or joked with their family? Therapy can be fun, just see my friend Alice Hortop’s work on comedy as therapy (https://alicehortop.com/)!

 

 

Ekman, P.  (1992). An argument for basic emotions. Cognition and Emotion, 6, 169–200.

 

 

 

Flaten, M. A. (2016). The neuroscience of pain, stress, and emotion : Psychological and clinical implications. In Al, M. Absi, M. A. Flaten, & M. Rogers (Eds.), Neuroscience of Pain, Stress, and Emotion: Amsterdam, Netherlands : Elsevier.

K.A. Lindquist, T.D. Wager, H. Kober, E. Bliss-Moreau, L.F. Barrett, (2012). The brain basis of emotion: a meta-analytic review. Behavioral and Brain Sciences, 35 (03),  121–143

 

 

Roy, M. (2015). Cerebral and spinal modulation of pain by emotions and attention. Pain, Emotion and Cognition, 35–52.

 

Sander, D. (2013). Models of emotion: the affective neuroscience approach. in J.L. Armony, P. Vuilleumier (Eds.), The Cambridge handbook of human affective neuroscience, Cambridge University Press, Cambridge, pp. 5–56

 

 

 

Primary pain disorders

In a move likely to create some havoc in compensation systems around the world (well, at least in my corner of the world!), the International Association for the Study of Pain has worked with the World Health Organisation to develop a way to classify and thus record persistent pain conditions in the new (draft) ICD-11. While primary headache disorder has been in the classification for some years, other forms of persistent pain have not. Recording the presence of a pain disorder is incredibly important step forward for recognising and (fingers crossed) funding research and treatment into the problem of persistent pain. As the IASP website states:

Chronic pain affects an estimated 20 percent of people worldwide and accounts for nearly one-fifth of physician visits. One way to ensure that chronic pain receives greater attention as a global health priority is to improve the International Classification of Diseases (ICD) diagnostic classification.

The classifications are reasonably straightforward, with an overall classification of “chronic pain”, and seven subcategories into which each type of pain can be placed.

Now there will be those who are uncomfortable with labelling a symptom (an experience, aporia, quale) as a separate diagnosis. I can understand this because pain is an experience – but at the same time, just as depression, which is an experience with clinical and subclinical features, so too is pain. There is short-term and useful pain, serving as an alert and warning, and typically an indication of the potential or actual threat to bodily integrity. Just as in depression which has short-term and usually useful episodes of sadness, withdrawal and tearfulness (as in grief). At the same time, there are periods when sadness becomes intractable and unhelpful – and we call this depression. Underlying both of these situations are biological processes, as well as psychological and social contributors. Until now, however, persistent pain has remained invisible.

The definition of chronic pain, at this time, is the IASP one from the 1980’s:

“Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. Often, pain serves as a symptom warning of a medical condition or injury. In these cases, treatment of the underlying medical condition is crucial and may resolve the pain. However, pain may persist despite successful management of the condition that initially caused it, or because the underlying medical condition cannot be treated successfully.

Chronic pain is pain that persists or recurs for longer than three months. Such pain often becomes the sole or predominant clinical problem in some patients. As such it may warrant specific diagnostic evaluation, therapy and rehabilitation. Chronic pain is a frequent condition, affecting an estimated 20% of people worldwide. This code should be used if a pain condition persists or recurs for longer than 3 months.”

Chronic Primary Pain is defined as “…chronic pain in one or more anatomical regions that is characterized by significant emotional distress (anxiety, anger/frustration or depressed mood) and functional disability (interference in daily life activities and reduced participation in social roles). Chronic primary pain is multifactorial: biological psychological and social factors contribute to the pain syndrome. The diagnosis is appropriate independently of identified biological or psychological contributors unless another diagnosis would better account for the presenting symptoms. Other chronic pain diagnoses to be considered are chronic cancer pain, chronic postsurgical or posttraumatic pain, chronic neuropathic pain, chronic headache or orofacial pain, chronic visceral pain and chronic musculoskeletal pain. Patients with chronic primary pain often report increased depressed and anxious mood, as well as anger and frustration. In addition, the pain significantly interferes with daily life activities and participation in social roles. Chronic primary pain is a frequent condition, and treatment should be geared towards the reduction of pain-related distress and disability.” (definition are found here)

The definition doesn’t require identified biological or psychological contributors – so people with primary pain would be those who have fibromyalgia, persistent low back pain, perhaps even “frozen” shoulder. The main requirement is that the person is distressed by it, and that it interferes with life. Now here’s a bit of a problem for those of us who have learned to live well with our persistent pain – I experience widespread pain, but generally I’m not distressed by it, and seeing as I’ve lived with it since my early 20’s, I find it hard to work out whether I’m limited by it, or whether I’ve just adjusted my life around it, so it doesn’t really get in the way of what I want to do. Technically, using the draft definition, I might not be given the label. Does this mean I don’t have chronic primary pain?

Why did I suggest compensation systems might be interested in this new classification? Well, in New Zealand, if a person has a pre-existing condition, for example they have osteoarthritic changes in their spine even if it’s not symptomatic (ie it doesn’t hurt), and then lodges a claim for a personal injury caused by accident, they may well find their claim for cover is declined.  What will happen if someone who has fibromyalgia, has an accident (say a shoulder impingement from lifting something heavy overhead), and the problem fails to settle? I think it’s possible they’ll have their claim declined. Low back pain is probably the most common primary pain disorder. Thousands of people in New Zealand develop low back pain each year. Few will have relevant findings on imaging – and even if imaging shows something, the potential for it to be directly related to the onset of low back pain is open to debate. Especially if we consider low back pain to be a condition that doesn’t just appear once, but re-occurs thereafter (1-7). What will this mean for insurers?

I don’t know where this classification will lead insurers, but from my perspective, I can only hope that by incorporating chronic pain into the ICD-11 we will at least begin to show just how pervasive this problem is, and how many people need help because of it. And maybe, just maybe, governments like the New Zealand government, will begin to take persistent pain seriously and make it a national health priority.

1. Dunn, K.M., Hestbaek, L., & Cassidy, J.D. (2013). Low back pain across the life course. Best Practice & Research in Clinical Rheumatology, 27(5), 591-600.
2. Artus, M., van der Windt, D., Jordan, K.P., & Croft, P.R. (2014). The clinical course of low back pain: A meta-analysis comparing outcomes in randomised clinical trials (rcts) and observational studies. BMC Musculoskeletal Disorders, 15, 68.
3. Vasseljen, O., Woodhouse, A., Bjorngaard, J.H., & Leivseth, L. (2013). Natural course of acute neck and low back pain in the general population: The HUNT study. Pain, 154(8), 1237-1244.
4. Hoy, D., March, L., Brooks, P., Blyth, F., Woolf, A., Bain, C., . . . Buchbinder, R. (2014). The global burden of low back pain: Estimates from the global burden of disease 2010 study. Annals of the Rheumatic Diseases, 73(6), 968-974.
5. Campbell, P., Foster, N.E., Thomas, E., & Dunn, K.M. (2013). Prognostic indicators of low back pain in primary care: Five-year prospective study. Journal of Pain, 14(8), 873-883.
6. Axén, I., & Leboeuf-Yde, C. (2013). Trajectories of low back pain. Best Practice & Research Clinical Rheumatology, 27(5), 601-612. doi: http://dx.doi.org/10.1016/j.berh.2013.10.004
7. Hoy, D. G., Smith, E., Cross, M., Sanchez-Riera, L., Buchbinder, R., Blyth, F. M., . . . March, L. M. (2014). The global burden of musculoskeletal conditions for 2010: an overview of methods. Annals of the Rheumatic Diseases, 73(6), 982-989. doi:10.1136/annrheumdis-2013-204344

Everyday hassles of fibromyalgia

This post has been on my mind for a while now. I live with fibromyalgia (FM) and want to share some of the everyday hassles I face. This isn’t a “oh woe is me” kind of post, it’s more of a “if you’re a clinician working with someone who has fibromyalgia, these are some things to ponder”.

Diagnosis

I worked in chronic pain management for almost 20 years before I recognised that the pains I’d been experiencing most of my adult life actually added up to “…a syndrome of diffuse body pain with associations of fatigue, sleep disturbance, cognitive changes, mood disturbance, and other variable somatic symptoms”(Fitzcharles, Ste-Marie, Goldenberg et al, 2012). I’d hurt my back in my early 20’s, thankfully been seen by Dr Mike Butler and given the Melzack & Wall book “The Challenge of Chronic Pain” to read, so I wasn’t afraid of my pain and just accepted it as part of life. What I hadn’t really recognised was that not only was the pain in my lower back part of the picture, so too was the pain in my neck, shoulders, arms, hips, legs, feet, and the irritable bowel, and the gastro discomfort, and the migraines and the dysmenorrhoea. Not to mention the fatigue, rotten sleep, foggy thoughts, and low mood.

Diagnosis for people living with fibromyalgia is often delayed.  People with fibromyalgia may resist going to the GP for what seem to be short-term but painful bouts in various parts of the body. There for a couple of weeks, then shifting to another part of the body. As one person said to me “You feel a fool going to see a Dr about a pain that’s not consistent to say ‘Oh Doctor and I have pain here, and here and here and last week I had one here…especially when it might be gone next week, and that other one has already gone.'”. This experience is echoed in qualitative research where, for example in a study by Undeland and Malterud (2007) people said that although having a label was reassuring (it’s not something that will kill you!), the label itself was often difficult to obtain (doctors not being keen to label something so nebulous as FM), and even with a label health professionals and the general public “pay no attention to the name, or blatantly regard them as too cheerful or healthy looking” (Undeland & Malterud, 2007).

Treatment

One of the problems with getting the diagnosis is that very few people get relief from medication. Those that do may find their pain settles almost completely, but many others have no effective analgesia despite trying numerous combinations. I’m one of them. What this means is that “self management” is the order of the day – yet in many places this is not even considered, let alone having services to help people develop such skills.

I’ve learned that my body feels best when I maintain a consistent level of activity irrespective of the day of the week. I enjoy stretching, walking, cycling and dancing, but I also love gardening, fishing, walking the dog – and I guess I can add in doing the housework and working as part of the mix. New activities are bound to give me aches and pains that last for weeks, while stopping my usual routine also brings me aches and pains that last for weeks. So boring consistency is the name of the game. And as I’ve previously blogged that means I look for a variety of different movement options in my repertoire.

Everyday hassles

The one thing that makes my life difficult is when I develop a new pain in a part of my body that doesn’t usually feel uncomfortable. Like most people living with persistent pain, I’ve developed an awareness of “my normal” (see this study by Strong & Large, 1995, for a nice description of this aspect of living with pain, one that is not often discussed). I know the usual pattern of my pains – bellyache, low back pain, neck and upper back pain, wrists and fingers, and often, knees, headaches and facial pain. These are my normal – but when should I seek help for a new pain? After all, it could be simply a manifestation of my fibromyalgia (ie there is nothing medically to be found, and no real change in management). At the same time, these are new pains – one in my shoulder that feels like an impingement (painful arc), and one that’s possibly an adductor tendon thing that’s very localised and hasn’t moved for over 7 months.

The question that keeps coming back to me is whether I’m overlooking something that can be treated, or whether it’ll just settle down like most of my pains do. Essentially I’ve just kept doing what I do and ignoring it.

The difference between my situation and those of people who are not painiacs, who don’t know that their pain is largely unrelated to the state of the tissues, is that I’m immersed in pain research all day, every day. I’m not overly bothered by these new pains. I’m continuing to exercise as normal and these pains aren’t interfering with what I need and want to do in daily life (well, perhaps a little…).

I can understand why someone might ask for help for a new pain. There are no rules saying that just because you have a persistent pain disorder you’re immune from acute musculoskeletal disorders. And sometimes by treating a new pain as an acute pain, it will vanish. Though, it must be said that outcomes for people with more than 3 or 4 persistent areas of pain with low back pain are not as good as those who only have one or two (Nordstoga, Nilsen, Vasseljen et al, 2017), nor of recovery and benefit from total hip and knee replacement (Wylde, Sayers, Odutola, Gooberman-Hill et al, 2017).

Points to ponder

So how do we as clinicians help people who must live with persistent pain?

• Do we consider the meaning of the labels we give? And do we read around the experiences of those who have been given the diagnosis? Or do we, instead, rely on our own beliefs and biases when thinking about the way we handle diagnosis?
• Do we give people an explanation for their pain that they can understand, or do we rely on currently favoured language and models without really considering what this means to the person? And do we ever check out how they’ve interpreted our explanations?
• Do we ever discuss how to self-manage pain? Do we think about the practical implications of needing to learn to modify every aspect of life in the face of pain that will not just go away? When I compare the tasks of living well with persistent pain against those needed to cope with other disorders, pain can interfere with everything – do we talk about the impact on sex? on relaxation? on having a holiday?
• Do we talk about what to do when a new pain turns up? Do we think about how someone can decide whether their pain is worth seeing someone about, or one they can handle? And do we even talk about the effect of having a persistent pain problem and then going on to have surgery? Do we teach people to recognise their “normal” pain, or are we afraid to teach people this because it might focus their attention on their pain?

I don’t have researched answers to these questions. I have my experience. And I’ve been working in this field a long time – yet somehow the voices of people living successfully with this pain are rarely heard.

 

Fitzcharles, M.-A., Ste-Marie, P. A., Goldenberg, D. L., Pereira, J. X., Abbey, S., Choinière, M., . . . Proulx, J. 2012 canadian guidelines for the diagnosis and management of fibromyalgia syndrome. http://fmguidelines.ca/

Nordstoga, A. L., Nilsen, T. I. L., Vasseljen, O., Unsgaard-Tøndel, M., & Mork, P. J. (2017). The influence of multisite pain and psychological comorbidity on prognosis of chronic low back pain: Longitudinal data from the norwegian hunt study. BMJ open, 7(5). doi:10.1136/bmjopen-2016-015312

Strong, J., & Large, R. (1995). Coping with chronic low back pain: An idiographic exploration through focus groups. The International Journal of Psychiatry in Medicine, 25(4), 371-387. doi:10.2190/H4P9-U5NB-2KJU-4TBN

Undeland, M., & Malterud, K. (2007). The fibromyalgia diagnosis – hardly helpful for the patients? Scandinavian Journal of Primary Health Care, 25(4), 250-255. doi:10.1080/02813430701706568

Wylde, V., Sayers, A., Odutola, A., Gooberman‐Hill, R., Dieppe, P., & Blom, A. (2017). Central sensitization as a determinant of patients’ benefit from total hip and knee replacement. European Journal of Pain, 21(2), 357-365.

On the value of doing, being and becoming

An old occupational therapy tagline was “doing, being, becoming”. The meaning of this phrase is intended to point to the tight relationship between what we do, who we are, and how we develop and grow. As I read blogs discussing an increased emphasis on “real world” outcomes there is something missing from the narratives: that intangible quality that marks the difference between colouring in – and painting. Or filling in a form – and writing a poem. Going from room to room – and dancing. Something about expressing who we are and what we value.

Values are things we hold dear. They are principles, or “desired qualities of behaviour”, life directions (not destinations).

The things we do (our actions) are inevitably infused with our values because how we do things (sloppily, carefully, neatly, with gay abandon, enthusiastically) is an expression of what we think is important. To give you an example, I occasionally vacuum my house. Sometimes I’ll do it really thoroughly – because I love seeing a sparkling house. Sometimes I’ll do it with a flick and a promise – because it’s a beautiful day and I want to get out of the house. In both instances I’ve expressed something about what is important to me – I do enjoy seeing my home looking tidy and organised. I don’t have to have reasons for liking my home this way, I just do. When I do a quick flick through my home it’s not because I’m lazy or I don’t care, it’s because I value getting out of the house more than I value having a tidy and organised home on that day.

Values don’t have to be explained. We don’t have to have reasons for holding them. They’re something we choose to place as important.

Why be concerned about values? Well, they underpin our choices. They provide motivation towards some activities, and away from others.

There is a lot of emphasis at the moment on people with osteoarthritis “getting fit” and “doing exercise”. The current approach in New Zealand is to provide community-based programmes to people who have just been declined joint replacement surgery (because we can’t offer surgery to everyone who wants it). Uptake hasn’t been enormous, and to be honest I’m not surprised. People who haven’t been exercisers are not very likely to begin an exercise programme that is undoubtedly going to increase their pain in the short-term (because, duh, movement hurts!) even if the programme offers hope of improved pain and function in the future. Putting this into a “values” and “motivation” perspective, people usually value comfort over discomfort. They value short-term outcomes over long. If they’ve never exercised much, it’s clear that exercise isn’t something they value. To help them engage in an exercise programme, we need to work hard to identify values they hold dear so they’ll look to those to over-ride the value of comfort over discomfort.

An alternative might be to think of different ways of expressing values that will concurrently meet the goal of increased exercise. For example, I don’t enjoy exercise per se. In fact I’ve boasted that my body is an exercise-free zone! To tell the truth, that’s not exactly the case. I just don’t do “exercises”. Instead I dance. I get out of my chair for five minutes every 20 minutes and go do something involving my whole body. I garden. I play with the dog. I go out in the kayak. I walk miles when I’m fishing.

Some people would argue that “there’s no evidence base for this” – but I think we’ve forgotten that exercises are simply a planned and repetitive form of moving our bodies because we don’t do that nearly as much in modern times as we used to even in the early 1900’s, let alone in stone-age times. I don’t think hunter-gatherers “do exercises” except as training for something like war or hunting (to increase skill).

Living life with chronic pain must become a lifestyle. And it needs to be a lifestyle that has some life to it – not an endless series of “things we must do for health”, unless “health” is a particular value. If life is just about “things we do for health” doesn’t that constantly remind people of what they don’t have? That they’re not healthy? Making them patients instead of people? For most people, to be healthy is a means to an end: they want to connect with family, express who they are, contribute to their society, love and be loved. If the person in front of us isn’t into exercise, it’s OUR job to work out what they value and connect what we think is important to what they think is important, or we will simply fail.

Some simple steps to identify values – try these out in the clinic!

1. When a person attends your clinic, they’re expressing a value, that they care about something. Asking the person “what do you hope from coming to see me” is a pretty common opening line. Try extending this by, after they’ve answered, asking “why is that important to you?” or “what would it mean you could do” or “how would that make a difference to you?”
2. If a person says they don’t like something, try suggesting to them that they value the exact opposite. eg if they’ve said they really don’t like running, ask them why: “it’s boring” might be the answer. This answer suggests they like variety and excitement in their exercise routine. Then you can ask them what activities they see as exciting – maybe instead of running, they’d enjoy virtual boxing (bring out the Oculus Prime!), or a scavenger hunt, or geocaching.
3. Use the 1 – 10 “readiness ruler” technique from Motivational Interviewing. Ask the person to draw a line and put 1 at one end, and 10 at the other. 1 = not at all important and 10 = incredibly important. Then ask them to put a cross on the line to indicate the importance they place on doing exercise/healthy living/pain management (whatever you’re asking them to do). Then (and this is important!) ask them why they put that mark so high. This is important – even if that mark is down on 2!! Ask them why they put it there and not lower. This will help elicit important values that you can then use to connect what you want them to do with what they value.
   

“Sleep is my drug, my bed is the dealer, and my alarm clock the police.”

Sleep.  The “little death”, the “golden chain that binds health and our bodies together”, “sleep is a hint of lovely oblivion”.

There’s no doubt that having pain and sleeping well just don’t go together – having trouble with sleep is a common problem for people living with pain.  One study reports that over a period of 26 months, 67% of people living with chronic low back pain experienced poor sleep (Axen, 2015). More than this, in the same study one single day of bothersome pain increased the risk of reporting 2 to 7 nights with disturbed sleep by two, and people with chronic low back pain were more likely to report poor sleep than those with acute low back pain.

In another study, (Harrison, Wilson & Munafo, 2015) teenagers from a large cohort study in the UK were surveyed to identify the presence of sleep problems, mood problems and pain problems. 21% of the population reported trouble with sleep, 5.5% reported pain problems, and 2.8% experienced both pain and sleep problems.

And in yet another study, participants with fibromyalgia had significantly shorter and more frequent wake bouts than those with primary insomnia, and the researchers argue that sleep disruption in fibromyalgia does not lead to prolonged periods of wakefulness, but seems to be a disorder of the sleep system whereby internal or external events repeatedly disturb and fragment sleep, and suggest the resulting increased frequency of awakenings may be, at least in part, due to pain, as studies have shown that reducing pain also improves sleep.

These researchers also considered that there is a relatively intact homeostatic drive in participants with fibromyalgia that causes them to quickly return to sleep after an awakening. This is evidenced by shorter initial sleep latency (LPS) and increased slow wave sleep, in addition to shorter duration of wake bouts compared with individuals with primary insomnia (Roth, Brown, Pitman, Roehrs & Resnick, 2015).

People who experience chronic pain can often experience depression, while those who have depression commonly experience sleep disturbance. There are suggestions that common neurobiological pathways exist between all three states.  Atrophy of the hippocampus and increased limbic area activation has been reported across all three conditions, while increased limbic activation occurs in all three conditions as well. Neurochemical changes are also found in all three conditions: HPA-axis hyperactivity has been found, with subsequent alteration to glucocorticoid receptor downregulation, monoaminergic neurons are inhibited as a result of glucocorticoid-induced monoamine depletion, thus reducing inhibitory drive and therefore increasing pain.

Slow wave sleep has been found to inhibit the HPA axis and cortisol secretion, with wakefulness associated with increased cortisol which could lead to increased HPA activation and subsequent elevation of pain (Boakye, Olechowski, Rashiq, Verrier, Kerr, Witmans, Baker, Joyce and Dick, 2015).

Essentially it seems clear that there are neurobiological factors that are implicated in chronic pain, depression and poor sleep.

The importance of this finding shouldn’t be under-estimated. In qualitative studies, participants report that one of the most challenging aspects of dealing with chronic pain is handling fatigue and sleep-related problems (Turk, Dworkin, Revicki, Harding et al, 2008). Pain not only affects sleep quality, but because it intrudes on cognitive processing, there is perceived effort involved in just handling day-to-day situations.

What to do about it…

Well, here’s the thing. Most of the ways GP’s manage sleep problems is through short-term prescriptions of hypnotics such as zopiclone and occasionally benzodiazepines. While there are some useful short-term effects from these drugs, chronic pain is not a short-term problem. Sleep disturbance associated with chronic pain is thus less likely to be helped by simply increasing the length of prescription – these drugs are not intended to be taken long-term. Other medications are used primarily for their pain reducing effects (such as gabapentin and the tricyclic antidepressants), but happily, also possess sedative effects.  These can be taken long-term – but may not work for everyone.

Alternatives include using cognitive behavioural therapy for insomnia. Actually, there are two alternatives – CBTi and sleep restriction, and in some cases, both together.

CBTi is a brief form of cognitive behavioural therapy that has been shown to be highly effective, and focuses on the thoughts and beliefs people hold about sleep, the habits people have associated with sleeping, and associations between habits, thoughts and sleep onset.  Sleep restriction, on the other hand, reduces the amount of time people are actually in bed overall, with the aim to consolidate sleep, and reduce the amount of time spent awake while in bed. Sleep restriction also influences the sleep architecture, so that people can descend into deep sleep more quickly, while reducing the amount of time in REM sleep and lighter levels of sleep.

A final alternative is to use mindfulness to help people become aware of their thoughts and habits about sleep, but instead of challenging or refuting them, learning to attend to them with curiosity and kindness, while at the same time reducing the amount of time awake while in bed.

As a long-time insomniac (now recovered!), I am well familiar with being awake when all else is silent, and on the troubles of trying to get off to sleep while my bed partner snoozes. I also know how hard it is to get back off to sleep after waking in the middle of the night.

Here’s what I did:

1. Used deep relaxation hypnosis to help establish the association between being relaxed and being in bed. I used this every night for ages, then I realised that I could do the hypnosis “in my head” rather than having someone else’s voice do it for me.
2. I got out of bed if I hadn’t been to sleep in about 30 minutes. Especially during the middle of the night! Not easy, but worthwhile so I didn’t lie there trying hard not to fidget and wake my partner. I found that if I tried to stay in bed I’d end up being so aware of my fidgeting and so strung out by trying NOT to fidget that I’d be wide awake and stressed. Not the best way to sleep!
3. Keeping the lights down low, and reading a book I’d already read was the next step once I’d got out of bed. That way I didn’t need to read every word, and it didn’t matter if I snoozed a little.
4. After about 30 minutes or so, I’d slide back into bed with my mind full of the story rather than being frazzled by not sleeping. And I’d return to my relaxation and breathing and gradually slip off to sleep.
5. More recently I’ve kicked the mental hypnosis/relaxation habit, and I now go to bed and simply roll over and slow my breathing and fall asleep. Learning to do this without using the hypnosis has been fabulous so I no longer need to worry about being awake at 3.00 in the morning! If I do wake, I head to the toilet, do my business, then slide back into bed and roll over and slow my breathing.

What I’ve learned from this is that the main habit I needed to learn was how to put myself to sleep. I also learned to remind myself that the occasional night with poor sleep is OK, I can handle. And if my sleep really turns to custard I have the skills to manage it myself.

I can’t stop the fact that fibromyalgia means there are some changes to the way my brain processes information, and that this means I’m likely to have poorer sleep than many other people. What I can change is how much I allow that to affect me. And by learning how to go off to sleep by myself, without the external aids, has meant I actually do fall asleep more quickly and don’t feel the effects of disrupted sleep to the same extent as I used to.

 

 

An allied health response to primary care for musculoskeletal aches and pains

For as long as I can remember, the joke about doctors saying “take two paracetamol and ring me in the morning” has been a pretty accurate reflection of reality – but no more perhaps?

A large review and meta-analysis of randomised placebo controlled trials of paracetamol in back pain and osteoarthritis has found that although paracetamol can provide a limited reduction in pain in osteoarthritis but not at a clinically important level, there is an elevated risk (four times) of having abnormal results on liver function tests (Machado, Maher, Ferreira, Pinheiro, Lin et al, 2015). The meaning of this elevated risk on liver function isn’t clear, but what is clear is the very minimal effect of what has been used as a mainstay drug for two of the most common complaints in the world.

Oh what are we to do? Because if the findings about paracetamol are stunning, add to it the clear evidence of harms associated with nonsteroidal anti-inflammatories, and we have a situation where the two most common front-line treatments for musculoskeletal pain are being strongly questioned. What’s a busy GP meant to do?

As a community, I think health professionals working with people who have musculoskeletal pain need to begin a concerted campaign to show the value of nonpharmacological approaches to managing life with aches and pains. We already have this beginning with some of the physiotherapy social media campaigns – see a physio first! But I think we could add “See your allied health team first”.

What would it mean to see an allied health professional first? And what would allied health professionals need to do to make this a valid option?

I think allied health professionals would need to make some changes to how we assess people presenting with pain – I wouldn’t want to ban the biomechanical, but here’s a question: how well do physiotherapists consider the psychosocial in their history taking? Luckily I don’t need to have the answer because Rob Oostendorp, Hans Elvers and colleagues have done the work for me.  In this study, therapists were observed conducting their first assessment with a new patient experiencing chronic neck or back pain. Their interviews were reviewed against the SCEBS (Somatic, Psychological (Cognition, Emotion and Behaviour) and Social dimensions of chronic pain), and given scores for how well the interviews explored these domains. Perhaps unsurprisingly, history taking for the Somatic dimension (how sore, where are you sore, what triggers etc) was excellent, with 98% including this area. BUT, and you’d expect this perhaps, Cognition was 43%, Behaviour was 38%, Emotion was 28%, and Social was 18%. What this means is that despite the clinicians themselves considering their coverage for all but the social domain as being “adequate”, in reality the only aspect that these clinicians covered well was the most basic area – “what does it feel like?”.

Challenging indeed.

Now, what would happen if we then examined what these clinicians do with that information? Because if we’re not so wonderful at collecting useful information across domains, my bet is that we’re even worse at combining this information to make sense of it – in other words, developing useful formulations.

Unfortunately I don’t have any information on how we as allied health clinicians use the information we collect, but if my experience as an educator and the very limited number of papers discussing formulations is anything to go by, I don’t think we’re doing too well. I suspect we tend to collect information then blithely continue doing what we’ve always done in terms of treatments. And I’m sorry I don’t have the evidence to support my hunch – would someone take this on for a project, please?

I think allied health professionals also need to make some changes to how we present what we do to the general public. While most people in the general public know that physiotherapists help people move, osteopaths are gentle and work with their hands, chiropractic looks after backs and necks – I’m not so sure anyone really knows what occupational therapists might offer, and I’m certain there would be some angst if psychologists were recommended as front line clinicians for musculoskeletal problems!

You see, while we’ve been concerned about a biomedical dominance in musculoskeletal pain, we haven’t been as good at helping the general public recognise that aches and pains are fairly common and often not a sign of pathology. We’ve been pretty poor at showing the value of relaxation, mindfulness and down-regulation as useful ways to deal with pain. We haven’t addressed the need to engage in occupations and activities that are fulfilling and enjoyable and enriching. In fact, I venture to say that we have almost wholly bought into the biomedical model when it comes to how to conceptualise musculoskeletal aches and pains. We are as guilty as anyone for considering an ache or pain as a sign that the person needs to be “fixed” or “mended” or “aligned” or “stabilised”.

I think a more radical approach, and one that allied health professionals can really endorse because there is evidence for it, is that living well involves being fully human beings. That means allowing ourselves to engage in what we love to do, to not only be active but also to relax, to be exuberant and to be peaceful. To think of our lives as a whole, rather than an isolated ouchy hip or knee or neck. And to look to our whole lifestyle as key to living well rather than “treating” the bit that happens to be bothering us right now.

Imagine that – an allied health workforce that puts out the message that life and wellbeing are the products of balancing all the wonderful facets of being human.

 

 

Machado, G.C., Maher, C.G., Ferreira, P.H., Pinheiro, M.B., Lin, C.-W.C., Day, R.O., . . . Ferreira, M.L. (2015). Efficacy and safety of paracetamol for spinal pain and osteoarthritis: Systematic review and meta-analysis of randomised placebo controlled trials (Vol. 350).

Oostendorp, Elvers, Mikolajewska, Laekeman, van Trijffel, Samwel, Duquet (2015). Manual physical therapists’ use of biopsychosocial history taking in the management of patients with back or neck pain in clinical practice. The Scientific World Journal, 2015, art. 170463, doi: http://dx.doi.org/10.1155/2015/170463