Mulling over the pain management vs pain reduction divide

I’ve worked in persistent pain management for most of my career. This means I am biased towards pain management. At times this creates tension when I begin talking to clinicians who work in acute or subacute musculoskeletal pain, because they wonder whether what I talk about is relevant to them. After all, why would someone need to know about ongoing management when hopefully their pain will completely go?

I have sympathy for this position – for many people, a bout of tendonosis, or a strained muscle or even radicular pain can ebb away, leaving the person feeling as good as new. While it might take a few months for these pain problems to settle, in many instances there’s not too much need for long-term changes in how the person lives their life.

On the other hand, there are many, many people who either don’t have simple musculoskeletal problems (ie they’re complicated by other health conditions, or they have concurrent issues that make dealing with pain a bit of a challenge), or they have conditions that simply do not resolve. Good examples of these include osteoarthritis (hip, knee, shoulder, thumbs, fingers) and grumbly old lower back pain, or peripheral neuropathy (diabetic or otherwise). In these cases the potential for pain to carry on is very present, and I sometimes wonder how well we are set up to help them.

Let’s take the case of osteoarthritis. Because our overall population is aging, and because of, perhaps, obesity and inactivity, osteoarthritis of the knee is becoming a problem. People can develop OA knee early in their life after sustaining trauma to the knee (those rugby tackles, falling off motorcycles, falling off horses, running injuries), or later in life as they age – so OA knee is a problem of middle to later age. People living with knee OA describe being concerned about pain, especially pain that goes on after they’ve stopped activities; they’re worried about walking, bending and maintaining independence – and are kinda pessimistic about the future thinking that  “in 10 years their health would be worse and their arthritis would be a major problem” (Burks, 2002).

To someone living with osteoarthritis, especially knee osteoarthritis, it can seem that there is only one solution: get a knee replacement. People are told that knee replacements are a good thing, but also warned that knee replacements shouldn’t be done “too soon”, leaving them feeling a bit stranded (Demierre, Castelao & Piot-Ziegler, 2011). Conversations about osteoarthritis are not prioritised in healthcare consultations – in part because people with knee osteoarthritis believe that knee pain is “just part of normal aging”, that there’s little to be done about it, and medications are thought to be unpleasant and not especially helpful (Jinks, Ong & Richardson, 2007).

I wonder how many healthcare professionals feel the same as the participants in the studies I’ve cited above. Do we think that knee OA is just something to “live with” because the problem is just part of old age, there’s an eventual solution, and meanwhile there’s not a lot we can do about it?

When I think about our approach to managing the pain of osteoarthritis, I also wonder about our approach to other pains that don’t settle the way we think they should. Is part of our reluctance to talk about pain that persists because we don’t feel we know enough to help? Or that we feel we’ve failed? Or that it’s just part of life and people should just get on with it? Is it about our feelings of powerlessness?

In the flush of enthusiasm for explaining the mechanisms of pain neurobiology, have we become somewhat insensitive to what it feels like to be on the receiving end when the “education” doesn’t reduce pain? And what do we do when our efforts to reduce pain fail to produce the kind of results we hope for? And the critical point, when do we begin talking about adapting to living well alongside pain?

What does a conversation about learning to adapt to pain look like – or do we just quietly let the person stop coming to see us once we establish their pain isn’t subsiding? I rather fancy it might be the latter.

Here’s a couple of thoughts about how we might broach the subject of learning to live with persistent pain rather than focusing exclusively on reducing pain:

• “What would you be doing if pain was less of a problem?” My old standby because in talking about this I can begin to see underlying values and valued activities that I can help the person look at starting, albeit maybe doing them differently.
• “What do you think are the chances of this pain completely going away?” Some might say this is about expectancy and I’m setting up a “nocebic” effect, but I argue that understanding the person’s own perspective is helpful. And sometimes, when a person has persistent pain and a diagnosis like osteoarthritis, their appraisal is less about catastrophising and more about holding a realistic view about their own body. It’s not about the appraisal – it’s about what we do about this. And we can use this perspective to built confidence and increase the importance of learning coping strategies.
• “If I could show you some ways to deal with pain fluctuations, would you be interested in learning more?” All episodes of pain that persists will have times when pain is more intense than others – flare-ups are a normal part of recovering from, and living with persistent pain. Everyone needs to know some ways of going with, being flexible about or coping with flare-ups. I teach people not to focus exclusively on reducing pain during these flare-up periods. This is because even during rehabilitation we don’t want to use pain as a guide (it can be a cruel task-master). We know that rehabilitation can increase (temporarily) pain while the body habituates to new movement patterns, the brain gets used to new input, and the homunculus gets redefined. It’s great to be able to teach strategies that increase the sense of safety, security and down-regulation that can be lost in the initial onslaught of pain.

To summarise, not all pain problems settle. We can help everyone to be more resilient if we begin talking about ways of coping with flare-ups even during subacute pain, particularly if we avoid an excessive focus on trying to avoid them. Instead, we can begin to help people feel confident that flare-ups always settle down, and that they can manage them effectively by using effective self management.

 

Burks, K. (2002). Health concerns of men with osteoarthritis of the knee. Orthopaedic Nursing, 21(4), 28-34.

Cohen, E., & Lee, Y. C. (2015). A mechanism-based approach to the management of osteoarthritis pain. Current Osteoporosis Reports, 13(6), 399-406.

Demierre, M., Castelao, E., & Piot-Ziegler, C. (2011). The long and painful path towards arthroplasty: A qualitative study. J Health Psychol, 16(4), 549-560. doi:10.1177/1359105310385365

Jinks, C., Ong, B. N., & Richardson, J. (2007). A mixed methods study to investigate needs assessment for knee pain and disability: Population and individual perspectives. BMC Musculoskeletal Disorders, 8, 59.

…and now what we’ve all been waiting for: What do to about central sensitisation in the clinic

For the last couple of weeks I’ve posted about central sensitisation; what it is, and how to assess for it. Today I’m going to turn to the “so what” question, and talk about what this might mean when we’re in the clinic.  Remember that most of this material comes from Jo Nijs’ recent talks at the New Zealand Pain Society.
Firstly, remember that pain is an experience that people have, underpinned by neurobiology, but also, depending on the level of analysis, on interactions with others, on systems and how they work, on culture, on individual experiences, and of course, on interacting within a body within an environment or context. Everything I say from here on is based on these assumptions.

The first point Jo Nijs makes is that when we know a bit more about the neurobiology of persistent pain associated with central sensitisation, we can use this knowledge wisely when we help someone make sense of their pain. This doesn’t mean wholesale and broadcast “I-will-tell-you-all-I-know-about-pain-neurobiology-because-I-know-you-need-to-know-it-because-I-know-it-and-think-it’s-important” which is, truth to tell, a lot more about the know-it-all than the person in front of them! We need to earn the right to give information – that means establishing that we’ve heard the other person’s story and the current meanings they’ve made from their experience. It also means asking permission to share new information. It means thinking about WHY we want to share new information.

So what if the person doesn’t use the same groovy language we use to describe his or her understanding?! So what if they’ve got some of the newer ideas slightly skewed. In the end, what’s important is that the person understands these things:

• Pain isn’t a direct reflection of what’s happening in the tissues.
• Pain can be influenced by many things, some of which are physical forces (heat, pressure and so forth), some of which are ideas, and some are emotions. And there are a bunch of other variables that can influence the experience, including what else is going on around the person.
• The brain is intimately involved with our experience of pain, and it’s a two-way street from body to brain and brain to body.
• Persistent pain is more about neurobiology than tissue damage per se (but not exclusively about neurobiology).

Our job is to make sure the person understands these things, rather than our job being about “educating” people. The end result matters, rather than any particular process.

If we look at the evidence for helping people reconceptualise their pain, there’s plenty to show that this approach is useful – it’s been a key tenet of a self-management cognitive behavioural approach to pain management since at least the late 1970’s. The later research (from Butler, Moseley and Louw et al) is simply looking at this approach within a slightly different cohort and in a different context. Rather than being integrated with an interdisciplinary pain management programme, research from these guys shows that physiotherapists (in particular) can deliver this kind of information very effectively – and that it helps reduce the fear and subsequent efforts to avoid pain (such as not moving, seeking healthcare, and being worried about pain). Yay!

It’s true that there are many different ways to influence the descending modulatory system, and release endorphins. One of them is to help people understand their pain and be more confident about moving. Another is to place hands on the person – hence massage therapy, manual therapies, manipulations and so on. Nijs believes hands on therapy has best effect after you’ve gone through some of the reconceptualisation that’s often needed (Bishop, Torres-Cueco, Gay, Lluch-Girbes, Beneciuk, & Bialosky, 2015).

Similar arguments can be made for considering sleep management and stress management as an integral part of pain management. (To be perfectly honest, I always thought this was part of what we did…). So here’s the argument: we know most people with persistent pain experience rotten sleep. We also know that people are stressed by their experience of pain. Because poor sleep is associated with increased activation of glia in the prefrontal cortex, amygdala and hippocampus, and therefore are pro-inflammatory, pain is often increased after a poor night’s sleep. Sleep medications interfere with the sleep architecture, so it’s useful to consider nonpharmacological approaches to sleep management.

Three strategies to consider:

• CBT for insomnia – here’s one resource to use
• ACT or acceptance and commitment therapy – I’ve written a great deal about ACT, just use the search function on this blog for more
• Exercise – OMG yes, exercise is effective! (just not right before bedtime, kthx)

Stress management is tougher. We can’t avoid experiencing stress – and neither can we live in a bubble where we don’t ever get exposed to stress. Instead, we probably all could do with learning multiple ways of managing stress. Things like realistic evaluations of the situation, increasing our capabilities for regulating our response to stress via biofeedback if need be, and using mindfulness as a strategy for being with stress instead of fighting against it, or folding beneath it.

I haven’t cited many references in this post – not because there aren’t many, but because there are SO many! And I’ll post more next week when I start looking at the rather sexy neurobiological examinations of processes used in pain management for years (yes, we’ve been doing it for a long time, we now have great explanations for how these things might work – though effect sizes are still small.)

 

Bishop, M. D., Torres-Cueco, R., Gay, C. W., Lluch-Girbés, E., Beneciuk, J. M., & Bialosky, J. E. (2015). What effect can manual therapy have on a patient’s pain experience?. Pain, 5(6), 455-464.

 

Does central sensitisation matter?

In my last post I discussed some of the mechanisms thought to be involved in central sensitisation, and while many of the details remain pretty unknown, I think the general conclusion is that yes, it really is a thing. What do I mean by central sensitisation? Well, it’s curious, it can refer to the processes at spinal and brain levels that seem to reduce the usual descending inhibitory mechanisms, expand the areas in which neural activity takes place, and allows increased information flow to eventually reach conscious awareness. At the same time it can refer to the experience in which a person feels greater pain than anticipated, given the degree of input; pain that is distributed more widely than anticipated, given the degree of input; and/or pain that lasts longer than we’d expect, given the degree of input (Woolf, 2011). BTW most of this post is derived from talks given by Pro Jo Nijs at the recent New Zealand Pain Society Conference.

The question now is whether this really matters. After all, nociceptor inputs can trigger a prolonged but reversible increase in central nociceptive pathways – if they’re reversible, just eliminate the original nociceptive input, and voila! The sensitisation is gone. What we know, however, is that in many cases the tendency towards having long-term increased sensitivity remains, or was perhaps always present.

Well, unfortunately if someone does tend to have greater activity in the central nervous system, then it has the potential to add enormously to poor outcomes if he or she decides to have surgery. For example, individuals with this tendency experience poorer outcomes after total knee replacement; and after shoulder surgery; but not after hip-joint replacement surgery. Testing in these cases was conducted using conditioned pain modulation which involves people undergoing painful testing – when they’re already in pain! Brave souls. You can see why it’s not a popular testing procedure in mainstream surgical situations.

Adding to the view that central sensitisation matters clinically, Ferrandiz and colleagues (2016) found that central sensitisation mediates the treatment effects in people with low back pain; Jull and colleagues (2007) found the same for neck pain after whiplash; Coombes and colleagues (2015) found the same for people with chronic tennis elbow.  It seems that central sensitisation is associated with greater pain catastrophising, slower movements, higher pain reporting, poorer functioning, increased perception of pain, and fear of moving.

The question now is how best to assess for the presence of this phenomenon. Given that most people won’t want to undergo conditioned pain modulation (not to mention the need for testing equipment and skilled technicians to administer the test!), what’s needed is a reasonably simple way to identify those who have the characteristics of central sensitisation so we can plan for, and manage it, more effectively.

Nijs and the Pain in Motion Research Group published the first set of criteria in 2014, from an epidemiological perspective. This classification approach involves first excluding neuropathic pain – and the group propose using IASP diagnostic criteria for neuropathic pain (see Haanpaa & Treede, 2010). If the problem is neuropathic pain (where there is a clear lesion of the nerve), then it’s managed accordingly (although we really don’t have great treatments for this kind of pain, either!).

Then they propose an algorithm which helps to clarify whether the problem is central sensitisation or “something else”.

The first question is whether the person identifies they have “disproportionate pain experience” – now this I have a problem with, because what is a “proportionate” pain experience? Given how fluid our experience of pain can be, and how poorly the experience correlates with what’s going on in the tissues, I find this a bit tough to use as a clear-cut indicator. Nevertheless, it’s the first question asked in this algorithm…

The next question relates to the person experiencing diffuse pain distribution (or, perhaps, wider spread than expected). If this is the case, eg someone has a grazed knee, but pain is experienced all over the entire leg, then it’s identified as central sensitisation. If the result is more like pain just above the knee to just below, then it’s somewhat equivocal, so the authors suggest the person completes the Central Sensitisation Inventory. This is a questionnaire I’ve discussed in the past. I’m no nearer to establishing whether it really is a useful measure than when I wrote that blog, but the measure continues to be used, and research is ongoing. Certainly, Jo Nijs and group seem to think the measure holds promise and might help to classify those at greater risk of developing problems with pain if they proceed to surgery.

So, to summarise, while the mechanisms involved in central sensitisation are still being discovered, and it’s challenging to know where normal processes end and abnormal ones begin, it definitely seems to be a clinical phenomenon affecting not only those without peripheral nociception (eg migraine), but also those with clearcut peripheral problems like osteoarthritis. Central sensitisation processes seem to underpin some of the most problematic pain problems we know of, and can get in the way of recovery even when peripheral nociceptive input has been removed – 18% of total knee-joint replacements are revised because of ongoing pain, and this pain doesn’t seem to improve after subsequent surgery (NZ National Joint Registry). There’s confusion about language – does the term refer to the mechanisms thought to be involved, or does it refer to the experience described by people? And assessing it is challenging – either go through complex and painful testing, or complete a questionnaire that may confound distress about health (and subsequent hypervigilance about body symptoms) with pain and other responses that might represent the presence of central sensitisation processes being invoked.

More challenging still is what do we do once central sensitisation is identified? Are our treatments any good? That, folks, will be explored in the next enthralling episode on Healthskills!

 

Baert, I., Lluch, E., Mulder, T., Nijs, J., Noten, S., & Meeus, M. (2016). Does pre-surgical central modulation of pain influence outcome after total knee replacement? A systematic review. Osteoarthritis and Cartilage, 24(2), 213-223.

Haanpää M, Treede RD. Diagnosis and classification of neuropathic pain. Pain Clinical Updates 2010; XVII.

Nijs, J., Torres-Cueco, R., van Wilgen, P., Lluch Girbés, E., Struyf, F., Roussel, N., . . . Vanderweeën, L. (2014). Applying modern pain neuroscience in clinical practice: Criteria for the classification of central sensitization pain. Pain Physician, 17(5), 447-457.

Valencia, C., Fillingim, R. B., Bishop, M., Wu, S. S., Wright, T. W., Moser, M., . . . George, S. Z. (2014). Investigation of central pain processing in post-operative shoulder pain and disability. The Clinical Journal of Pain, 30(9), 775.

Woolf, C. J. (2011). Central sensitization: Implications for the diagnosis and treatment of pain. Pain, 152(3 Suppl), S2-15.

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.

Is central sensitisation really a thing?

It seems odd to me that there’s much argument about central sensitisation in pain circles. I thought the idea of central sensitisation was well-established based on research from some years ago – but apparently there are still arguments about its relevance, and lots of debate about how to identify it clinically. This post is based mainly on a presentation by Jo Nijs from Pain in Motion, at the recent NZ Pain Society meeting in Nelson. In this post I want to briefly review the material presented by Jo suggesting that central sensitisation is a thing. I’ll write more about assessment in a future blog, or this post will be the longest ever!

Firstly, what is it and why should it matter? Researchers have long been aware that when a nerve is repeatedly stimulated, in future stimulation it will respond for longer and with more intensity – this is called long-term potentiation. Recently, the contribution of glial cells to this situation has been identified (remember glia? Those little cells whose purpose no-one really knew? Turns out they release gliotransmitters that circulate throughout the spinal cord and allow information to be transmitted widely, far from the original source of stimulation – see Kronschlager, Drdla-Schutting, Gassner, Honsek et al, (2016). Glial cells occur widely throughout the central nervous system, and while LTP is a process we’ve known about in the CNS for some time – we’ve known because this is how “memories” are formed (remember “nerves that fire together wire together”? Pathways that frequently activate develop the tendency to continue to activate together) – we’ve perhaps not been aware that this occurs in the spinal cord as well. So, LTP occurs in both the spinal cord and the brain, and there is more than one way this process is facilitated. Glial cells are one. Central sensitisation involves this process of long-term potentiation across and amongst pathways within our nervous system – it means information from peripheral regions like your big toe are more likely to be transmitted to areas in the brain responsible for attending and responding to threatening information.

Why does this matter? Well, if we think of ourselves as a finely tuned homeostatic machine, one that wants to remain in a stable state, we can think of two systems balanced with one another. One system works to facilitate information transmission (nociceptive facilitation), while the other works to reduce or modulate this transmission (endogenous hypoalgesia). If we continue with the machine analogy, we want to know about “trouble” as soon as possible – so our nociceptive facilitatory system is like an accelerator, working promptly to make sure we know about the state of play very quickly. If you’ve ever driven a race car, you’ll know how twitchy the accelerators are! The brakes on this system is our endogenous opioid system which reduces the influence of the nociceptive system so we can keep moving forward. If the brakes fail, for whatever reason, in a race car we’ll burst forward! Similarly, if the endogenous modulatory system fails, for whatever reason, far more information ascends to relevant regions in the brain for interpretation – and ouch.

What sorts of things enhance connectivity between areas of the brain that deal with nociceptive information? Well, this is where things get all woolly and psychosocial for a while (sorry guys!). From many fMRI studies, it’s possible to establish that “pain catastrophising” or the tendency to brood on pain, feel helpless about it, and regard the pain as seriously intense activates brain areas like the dorsolateral prefrontal cortex, the anterior cingulate cortex, and the insula, which in term reduces the efficiency of the opioid analgesic system (that endogenous opioid system), makes it harder to distract attention from the pain, and increases facilitation (ie the transmission of nociceptive information from lower CNS to higher). In other words, this very psychological construct has a biological component to it.

Central sensitisation has been identified in many different pain problems, ranging from osteoarthritis in the knee (Akinci, Al Shaker, Chang, et al, 2016), post-cancer pain (Lam, 2016), shoulder pain (Sanchis, lluch, Nijs, Struyf & Kangasperko, 2015), and yes, those messy complicated ones like whiplash (Coppieters, Ickmans, Cagnie, Nijs, et al, 2015), low back pain (Sanzarello, Merlini, Rosa, Perrone et al, 2016) and fibromyalgia (Walitt, Ceko, Gracely & Gracely, 2016). Rates of central sensitisation vary from 10% in shoulder pain to 100% in fibromyalgia. For some good reading on central sensitisation in these disorders, take a look at the references I’ve cited.

So yes, central sensitisation is a thing, and it results in increased pain experiences that last longer and spread. Why do some people experience while others don’t? Now we’re venturing into rather more speculative areas, but some findings seem clinically useful. People who have, in their early years, experienced physical and/or psychological trauma, those who tend to catastrophise or have unhelpful beliefs (often inaccurate beliefs) about their pain,  those who have poor sleep, and those who have an elevated stress response seem more likely to have pain that fits with what we’d expect with central sensitisation (See Nijs & Ickmans, 2014).

Why does this occur? Well, stress increases release of glutamate and this in turn increases CNS excitability (makes sense – let’s react faster to everything, at least for a short time). At the same time, stress reduces GABA and serotonin, and as a result inhibition is reduced (the brakes come off). If we add microglial activity to the mix (remember that’s going to increase the connectivity between neurones), and if we add ongoing release of adrenaline in because the stress has been continuing for a while, we’re going to end up with activated glial activity in the prefrontal cortex, amygdala and hippocampus, all important areas for detecting salience and making decisions to act. These glial cells release chemicals known to increase neuroinflammation, reducing hippocampal activity (ultimately reducing volume of neurones in this area), increasing the size of the amygdala (which means it’s more capable of responding to threat), and reducing the prefrontal cortex size, reducing the capacity to make considered decisions (Kregel, Meeus, Malfliet et al, 2015). Ew… nasty! In longterm stressful situations, it seems our brains adapt – and not in a helpful way when it comes to experiencing pain. Whatever you do DON’T say to your patients  “Oh and by the way, your back pain means your brain is inflamed and parts of your brain are shrinking” – this is NOT helpful!

Next post I’ll discuss assessing for central sensitisation – but before I do, remember that central sensitisation is not the only factor at play in ongoing pain. In fact, some people don’t seem to develop central sensitisation even with ongoing nociception from either disease processes, or inflammation. We don’t really know why. What we do know is that simply treating peripheral nociceptive input when central sensitisation is present may fail to help the person – so keeping an eye out for it is important.

 

Akinci, A., Al Shaker, M., Chang, M. H., Cheung, C. W., Danilov, A., Jose Duenas, H., . . . Wang, Y. (2016). Predictive factors and clinical biomarkers for treatment in patients with chronic pain caused by osteoarthritis with a central sensitisation component. International Journal of Clinical Practice, 70(1), 31-44.

Coppieters, I., Ickmans, K., Cagnie, B., Nijs, J., De Pauw, R., Noten, S., & Meeus, M. (2015). Cognitive performance is related to central sensitization and health-related quality of life in patients with chronic whiplash-associated disorders and fibromyalgia. Pain Physician, 18(3), E389-401.

Kregel, J., Meeus, M., Malfliet, A., Dolphens, M., Danneels, L., Nijs, J., & Cagnie, B. (2015). Structural and functional brain abnormalities in chronic low back pain: A systematic review☆. Paper presented at the Seminars in arthritis and rheumatism.

Kronschläger, M. T., Drdla-Schutting, R., Gassner, M., Honsek, S. D., Teuchmann, H. L., & Sandkühler, J. (2016). Gliogenic ltp spreads widely in nociceptive pathways. Science, 354(6316), 1144-1148. doi:10.1126/science.aah5715

Lam, D. K. (2016). Emerging factors in the progression of cancer-related pain. Pain Management, 6(5), 487-496.

Nijs, J., & Ickmans, K. (2014). Chronic whiplash-associated disorders: To exercise or not? The Lancet, 384(9938), 109-111.

Sanchis, M. N., Lluch, E., Nijs, J., Struyf, F., & Kangasperko, M. (2015). The role of central sensitization in shoulder pain: A systematic literature review. Seminars in Arthritis & Rheumatism, 44(6), 710-716.

Sanzarello, I., Merlini, L., Rosa, M. A., Perrone, M., Frugiuele, J., Borghi, R., & Faldini, C. (2016). Central sensitization in chronic low back pain: A narrative review. Journal of Back & Musculoskeletal Rehabilitation, 29(4), 625-633.

Walitt, B., Ceko, M., Gracely, J. L., & Gracely, R. H. (2016). Neuroimaging of central sensitivity syndromes: Key insights from the scientific literature. Current Rheumatology Reviews, 12(1), 55-87.

What to do with the results from the PCS

The Pain Catastrophising Scale is one of the more popular measures used in pain assessment. It’s popular because catastrophising (thinking the worst) has been identified as an especially important risk factor for slow recovery from pain (Abbott, Tyni-Lenne & Hedlund, 2010), for reporting high levels of pain intensity (Langley, 2011), and for ongoing disability (Elfving, Andersoon & Grooten, 2007). I could have cited hundreds more references to support these claims, BTW.

The problem is, once the PCS is administered and scored: what then? What difference does it make in how we go about helping a person think a little more positively about their pain, do more and feel more confident?

If you haven’t seen my earlier posts about the PCS, take a look at this, this, and this for more details.

Anyway, so someone has high scores on rumination, helplessness and magnifying – what does this mean? Let’s say we have two people attending the clinic, one has really high scores on all three subscales, while the other has low or average scores. Both have grumbly old low back pain, both have had exercises in the past, both are finding it tough to do normal daily activities right now.

For a good, general pain management approach to low back pain, and once red flags are excluded (yes, the “bio” comes first!) this is what I do. I establish what the person thinks is going on and ask if it’s OK to talk about pain neurobiology. Together we’ll generate a pain formulation, which is really a spaghetti diagram showing the experience as described by the person (I used guided discovery to develop it). I then ask the person what they’d be doing if their pain wasn’t such a problem for them, perhaps what they’re finding the most frustrating thing about their situation at the moment. Often it will be sleep, or driving or cooking dinner, or perhaps even getting clothes on (shoes and socks!). I’ll then begin with helping the person develop good relaxed breathing (for using with painful movements), and start by encouraging movement into the painful zone while remaining relaxed, and tie this in with one of the common activities (occupations) the person needs or wants to do. For example, I’ll encourage bending forward to put shoes and socks on while breathing in a relaxed and calm way. I’ll be watching and also encourage relaxing the shoulders and any other tense parts of the body. For someone who is just generally sore but doesn’t report high pain catastrophising, I will also encourage some daily movements doing something they enjoy – it might be walking, yoga, dancing, gardening, whatever they enjoy and will do regularly every day for whatever they can manage. Sometimes people need to start small so 5 minutes might be enough. I suggest being consistent, doing some relaxation afterwards, and building up only once the person has maintained four or five days of consistent activity. And doing the activity the person has been finding difficult.

If the person I’m seeing has high scores on the PCS I’ll begin in a similar way, but I’ll teach a couple of additional things, and I’ll expect to set a much lower target – and probably provide far more support. Catastrophising is often associated with having trouble disengaging from thinking about pain (ruminating), so I’ll teach the person some ways to deal with persistent thoughts that hang around.

A couple to try: mindfulness, although this practice requires practice! It’s not intended to help the person become relaxed! It’s intended to help them discipline their mind to attend to one thing without judgement and to notice and be gentle with the mind when it gets off track, which it will. I ask people to practice this at least four times a day, or whenever they’re waiting for something – like the jug to boil, or while cleaning teeth, or perhaps waiting for a traffic light.

Another is to use a “15 minutes of worry” practice. I ask the person to set a time in the evening to sit down and worry, usually from 7.00 – 7.15pm. Throughout the day I ask the person to notice when they’re ruminating on their situation. I ask them to remind themselves that they’re going to worry about that tonight and deliberately put that worry aside until their appointment with worry. Then, at 7.00pm they are asked to get a piece of paper and write ALL their worries down for a solid 15 minutes. No stopping until 15 minutes is over! It’s really hard. Then when they go to sleep, I ask them to remind themselves that they’ve now worried all their worries, and they can gently set those thoughts aside because they won’t forget their worry, it’s written down (I think worry is one way a mind tries hard to stop you from forgetting to DO something about the worry!). People can throw the paper away in the morning because then it begins all over again.

Usually people who score high on the PCS also find it hard to be realistic about their pain, they’ll use words that are really emotive and often fail to notice parts of the body that aren’t in pain. By noticing the worst, they find it tough to notice the best.  I like to guide people to notice the unloved parts of their body, the bits that don’t hurt – like the earlobes, or the belly button. I’ll offer guidance as to what to notice while we’re doing things, in particular, I like to guide people to notice those parts of the body that are moving smoothly, comfortably and that look relaxed. This is intended to support selective attention to good things – rather than only noticing pain.

Finally, I give more support to those who tend to be more worried about their pain than others. So I might set the goals a little lower – walking for five times a week, two days off for good behaviour rather than every day. Walking for five minutes rather than ten. And I’ll check in with them more often – by text, email or setting appointments closer together. It’s important for people who fear the worst to experience some success, so setting small goals that are achieved can build self efficacy – especially when I try hard to offer encouragement in terms of what the person has done despite the odds. So, if the person says they’ve had a real flare-up, I’ll try to boost confidence by acknowledging that they’ve come in to see me even though it’s a bad pain day, that they’ve tried to do something instead of nothing, that talking to me about the challenge shows guts and determination.

People who see the glass as half empty rather than half full are just people. Like you and I, they’re people who have a cognitive bias. With support, we can help people view their pain differently – and that process applies to all of us, not just those with high scores on the PCS.

 

Abbott, A. D., Tyni-Lenne, R., & Hedlund, R. (2010). The influence of psychological factors on pre-operative levels of pain intensity, disability and health-related quality of life in lumbar spinal fusion surgery patients. Physiotherapy, 96(3), 213-221. doi:10.1016/j.physio.2009.11.013

Elfving, B., Andersson, T., & Grooten, W. J. (2007). Low levels of physical activity in back pain patients are associated with high levels of fear-avoidance beliefs and pain catastrophizing. Physiotherapy Research International, 12(1), 14-24.

Langley, P. C. (2011). The prevalence, correlates and treatment of pain in the european union. Curr Med Res Opin, 27(2), 463-480. doi:10.1185/03007995.2010.542136

A new year

So 2016 is over, and 2017 is here. As usual, I find the new year to be a time for reflecting on what is important in life, and what I’d like to see more of this year. Usually I’ll want more balance. More space between frantic activity. Maybe even less frantic activity! And I pretty much always want to learn something new. But this year I want to be a bit different. Yes I’ve been thinking about what’s important, and yes I want more balance, but this year I want to work on a new project as part of this blog.

I’ve been writing for so many years, and one of my main reasons for doing so is to bridge the gap between what’s found in research, and what clinicians are doing in their practice. I want to inform and I want to infuse that information with a strong sense that alongside what we know from research we need to remember these things:

1. We work with people – not doing things TO people (even if we do things to people), but we have a window of maybe an hour in a clinic in which everything we say and everything we do is pondered over by the people we see. And believe me, people will interpret what we say and do and then make their own decision about what happens next.
2. We could all become a patient. That’s a bit humbling because we don’t expect we’ll develop a problem, but pain is indiscriminate – it will affect anyone and everyone. Trouble recovering is somewhat more discriminating – some people are at more risk than others, but here’s the thing: there are SO MANY variables that have been known to influence recovery that we can never be truly certain that we’ll be able to dodge that bullet. So, you and I can become a patient, and our recovery may also be complex, and we may need to swallow the bitter truth that rehabilitation is plain hard work.
3. People don’t exist in isolation. Most of our treatment philosophy and techniques focus on the person with pain. Just that person. Not their family, their employer, their friends or colleagues or mates. Just that individual. But we know that people live within a community. And that community is pretty big – especially when we think of the connections made around the interwebs! And for every time we see “a person” we ALSO need to see “a person-in-context”.
4. We get it wrong. We all do. We fail. We don’t reason clearly. We get hooked up in our own biases. We ignore things. We look for things that confirm our own beliefs. We notice things we want to notice, and conveniently ignore things we don’t want to notice. And we often don’t even know we’re doing it. That’s a constant and ongoing tendency we all need to work hard to counter.
5. Research often omits important variables. This world is complicated. There are so many factors influencing what happens, when, where and why. Researchers can’t control everything. And because people are messy, complicated and ornery beings, the people we see (and ourselves) don’t always fit within the parameters of what’s been found in a research study. This doesn’t mean research findings aren’t important, it just means we need to temper our tendency to adopt a new and groovy thing just because a piece of research suggests it’s very cool. And we need to recognise that, especially here in NZ, studies conducted elsewhere in the world may not work as well here in our country. And that applies everywhere and to all human-oriented research. Context is critical. What people want and believe in is also critical. Qualitative research begins to bridge the gap between experimental designs and individual variability – but it’s often considered less valuable than quantitative research.
6. People living well with chronic pain need to inform our practice. Why? Because we can learn so much from people who have been able to see life differently. Who have taken gems from wherever they’ve found them, been able to integrate those gems into their daily lives, and are now in the best position to help us learn what worked for them – and most importantly, why it’s worked.
7. We’re biopsychosocial beings. People are biological beings, with psychological processes that influence their actions, many of which have been picked up from the social context in which they live. Those psychosocial factors are integral to living, not some add-on, after-the-fact mess that only applies if our treatments don’t work. We ALL actively process what happens to us, and interpret these things in light of what we already know and what we think might happen next. Yes I know this model is incomplete. I know some people can think of it as reductionist. Others think it’s messy and non-scientific. Still others believe it’s useless and impractical. But whether it’s an “accurate” way of thinking about people or not, I think it can be a helpful framework from which we can begin to explore situations where people are involved.

The new project

I’ve written thousands of words. Usually about 1200 once a week on this blog alone. My intention this year is to collate that writing and sort it into some semblance of order. I intend to post short summaries on topics and link to some of my older work for details. And maybe, just maybe, there could be a book at the end of it! Whatever I manage, this year I will be learning new things, and I will be posting them up here. So keep visiting! Ask questions and comment. Be part of the conversations that can change our approach to helping people with pain. Want to join me?

… a little more about Pain Catastrophising subscales

I’ve been writing about the Pain Catastrophising Scale and how to use this instrument in clinical practice these last two posts here and here because the construct of catastrophising (thinking the worst) has become one of the most useful to help identify people who may have more distress and disability when dealing with pain. Today I want to continue with this discussion, but looking this time at a large new study where the subscales magnification, rumination and hopelessness have been examined separately to understand their individual impact on pain severity and disability.

Craner, Gilliam and Sperry looked at the results of 844 patients with chronic pain prior to taking part in a group programme (a heterogeous sample, rather than a single diagnosis, so this group probably look at lot like those admitted to high intensity tertiary chronic pain management services such as Burwood Pain Management Centre here in Christchurch).  Most of the participants were female, European/white and married, and had chronic pain for an average of 10.7 years. Just over half were using opioid medication to manage their pain.

Along with the PCS, participants also completed some very common measures of disability (Westhaven-Yale Multidimensional Pain Inventory – MPI) and quality of life (SF-36), and the CES-D which is a measure of depression.

Now here comes some statistical analysis: multiple hierarchical regression! Age, sex, duration of pain and use of opioids were entered into the equation and found to account for only 2.0% variance of the pain severity subscale of the MPI – but once the PCS was added in (subscales entered separately) an additional 14% of the variance was accounted for, but the helplessness subscale was the only one to contribute significantly to the overall variance.

When Pain Interference was  entered as the dependent variable, all the same demographic variables as above contributed a meagre 1.2% of the variance, but when the Pain Severity subscale scores were added, 25.5% of the variance was explained – while the combined PCS subscales contributed 6.5% of the variance. Again, helplessness was the only subscale to contribute to Pain Interference.

Moving to quality of life – the physical subscale of the SF-36 was used as the dependent variable, and once again the demographic variables accounted for only 1.5% variance in physical QOL, with Pain Severity accounting for 23%. PCS subscales contributed only 2.6% of the variance, with only the magnification subscale being identified as a unique contributor. When the mental health subscale was used, again demographics only accounted for 1.2% of variance, with pain severity accounting for 12.4% of the variance. This time, however, the PCS subscales contributed 19.5% of the variance with both Magnification and Helplessness contributing to the variance.

Finally, examining depression, demographics contributed a small amount of variance (3.3%), with pain severity additing 9.8% of variance. The PCS subscales were then entered and contributed a total of 21% to the prediction of depression with both Magnification and Helplessness contributing to the overall depression variance.

The so what factor

What does this actually mean in clinical practice? Well first of all this is a large group of patients, so we can draw some conclusions from the calculations – but we need to be a little cautious because these participants are a group who have managed to get into a tertiary pain management facility. They’re also a group with a large percentage using opioids, and they were pretty much all European – and from North America, not New Zealand. I’m not sure they look like the people who might commonly come into a community-based facility, or one where they’d be referred directly from a GP or primary care centre.

At the same time, while this group may not look like the people most commonly seen for pain management, they share some similar characteristics – they tend to magnify the “awfulness” of pain, and then feel helpless when their pain is bothering them. Surprisingly, I thought, ruminating or brooding on pain wasn’t a unique contributor and instead the helplessness scale contributed the most to pain severity, pain-related interference (disability associated with pain), poor mental health quality of life, and low mood, while magnification scale contributed to poorer physical health quality of life, mental health quality of life and low mood.

What this means for practice

The authors suggest that the construct measured by the helplessness subscale might be a factor underlying poor adaptation to life’s difficulties in general, leading to passivity and negative emotions. They also suggest that magnification might be a unique contributor to perceiving obstacles to doing the things we need to do every day, while hopelessness might mean people are less likely to participate in enjoyable activities and then in turn contribute to feeling low.

Importantly, the authors state: “We offer that simply collapsing the 3 dimensions of this phenomenon (ie, rumination, magnification, helplessness) may actually conceal nuanced relationships between specific dimensions of catastrophizing and outcomes that would might inform treatment approaches.” Looking at the overall scores without thinking about the subscales is going to give you less information to use for individualising your treatment.

In a clinical setting I’d be reviewing the individual subscales of the PCS alongside both disability and mood measures to see if the suggested relationships exist in the scores this person has given.

I’d be taking a look at the repertoire of coping strategies the person can identify – and more, I’d be looking at how flexibly they apply these strategies. Extending the range of strategies a person can use, and problem-solving ways to use these strategies in different activities and contexts is an important part of therapy, particularly occupational therapy and physiotherapy. Another approach you might consider is helping people return to enjoyable activities that are within their tolerance right here, right now. By building confidence that it’s possible to return to things that are fun we might counter the effects of helplessness, and help put pain back where it belongs – an experience that we can choose to respond to, or not.

I’d also be taking a look at their tendency to avoid feeling what their pain feels like, in other words I’d like to see if the person can mindfully and without judging, complete a body scan that includes the areas that are painful. This approach is intended to help people notice that alongside the painful areas are other nonpainful ones, and that they can successfully be with their pain and make room for their pain rather than attempting to block it out, or over-attend to it. The way mindfulness might work is by allowing people to experience the sensations without the judgement that the experience is bad, or indicates some terrible catastrophe. It allows people to step back from the immediate reaction “OMG that’s BAD” and to instead take time to view it as it actually is, without the emotional halo around it.

Pain catastrophising is a useful construct – but I think we need to become more nuanced in how we use the scores from the questionnaire.

Craner, J. R., Gilliam, W. P., & Sperry, J. A. (2016). Rumination, magnification, and helplessness: How do different aspects of pain catastrophizing relate to pain severity and functioning? Clinical Journal of Pain, 32(12), 1028-1035.

What do we do with those questionnaires?

Courtesy of many influences in pain management practice, you’d have to have been hiding under a rock or maybe be some sort of dinosaur not to have noticed the increasing emphasis on using questionnaires to measure factors such as pain catastrophising, depression or avoidance. The problem is I’m not sure we’ve all been certain about what to do with the results. It’s not uncommon for me to hear people saying “Oh but once I see psychosocial factors there, I just refer on”, or “they’re useful when the person’s not responding to my treatment, but otherwise…”, “we use them for outcome measures, but they’re not much use for my treatment planning”.

I think many clinicians think psychosocial questionnaires are all very well – but “intuition”  will do “…and what difference would it make to my treatment anyway?”

Today I thought I’d deconstruct the Pain Catastrophising Scale and show what it really means in clinical practice.

The Pain Catastrophising Scale is a well-known and very useful measure of an individual’s tendency to “think the worst” when they’re considering their pain. Catastrophising is defined as “an exaggerated negative mental set brought to bear during actual or anticipated painful experience” (Sullivan et al., 2001). The questionnaire was first developed by Sullivan, Bishop and Pivik in 1995, and the full copy including an extensive manual is available here. Keep returning to that page because updates are made frequently, providing more information about the utility of the measure.

The questionnaire itself is a 13-item measure using a 0 – 4 Likert-type scale from 0 = “not at all” to 4 = “all the time”. Respondents are instructed to “indicate the degree to which you have these thoughts and feelings when you are experiencing pain”.

There are three subscales measuring three major dimensions of catastrophising: rumination “I can’t stop thinking about how much it hurts”; magnification “I worry that something serious may happen”; and helplessness “It’s awful and I feel that it overwhelms me”.

To score the instrument, simply sum all the responses to all 13 items, but to get a better idea of how to help a person, the subscale calculations involve the following:

Rumination: sum items 8,9,10, and 11

Magnification: sum items 6,7, and 13

Helplessness: sum items 1,2,3,4,5, and 12

There’s not a lot of point in having numbers without knowing what they mean, so the manual provides means and standard deviations relating to a population individuals with injury leading to lost time from work in Nova Scotia, Canada.

Clinicians are typically interested in whether the person sitting in front of them is likely to have trouble managing their pain, so the manual also provides “cut off”scores for what could be described as “clinically relevant” levels of catastrophising. A total score of 30 or more is thought to represent the 75th percentile of scores obtained by individuals with chronic pain.

The “so what” question

Cutting to the chase, the question is “so what”? What difference will getting this information from someone make to my clinical reasoning?

Leaving aside the enormous body of literature showing a relationship between high levels of catastrophising and generally poor responses to traditional treatments that address pain alone (including surgery for major joint replacement, recovery from multiple orthopaedic trauma, low back pain, shoulder pain etc), I think it’s helpful to dig down into what the three subscales tell us about the person we’re working with. It’s once we understand these tendencies that we can begin to work out how our approach with someone who has high levels of rumination might differ from what we’ll do when working with someone who has high levels of helplessness.

As an aside and being upfront, I think it’s important to remember that a questionnaire score will only tell you what a person wants you to know. Questionnaires are NOT X-rays of the mind! They’re just convenient ways to ask the same questions more than once, to collect the answers and compare what this person says with the responses from a whole lot of other people, and they allow us to organise information in a way that we might not think to do otherwise.  I also think it’s really important NOT to label a person as “a catastrophiser” as if this is a choice the person has made. People will have all sorts of reasons for tending to think the way they do, and judging someone is unprofessional and unethical.

Rumination

Rumination is that thing we do when a thought just won’t get out of our mind. You know the one – the ear worm, the endless round and round, especially at night, when we can’t get our mind off the things we’re worrying about. If a person has trouble with being able to drag his or her attention away, there are some useful things we can suggest. One theory about rumination is that it’s there as a sort of problem solving strategy, but one that has gone haywire.

Mindfulness can help so that people can notice their thoughts but not get hooked up into them. I like to use this both as a thought strategy, but also as a way of scanning the body and just noticing not only where the pain is experienced, but also where it is not.

“Fifteen minutes of worry” can also help – setting aside one specific time of the day (I like 7.00pm – 7.15pm) where you have to write down everything you’re worried about for a whole fifteen minutes without stopping. By also telling yourself throughout the day “I’m not worrying about this until tonight” and afterwards saying “I’ve already worried about this so I don’t need to right now”, worrying and ruminating can be contained. By being present with the thoughts during that 15 minutes, the threat value of the thought content is also reduced.

Magnification

This is the tendency to think of the worst possible thing rather than the most likely outcome, and it’s common! Magnification can really increase the distress and “freeze” response to a situation. If a person is thinking of all the worst possible outcomes it’s really hard for them to focus on what is actually happening in the here and now. There’s some adaptive features to magnification – if I’ve prepared for the worst, and it doesn’t happen, then I’m in a good situation to go on, but in some people this process becomes so overwhelming that their ability to plan is stopped in its tracks.

Once again, mindfulness can be really useful here, particularly paying attention to what is actually happening in the here and now, rather than what might happen or what has happened. Mindful attention to breathing, body and thoughts can help reduce the “freeze” response, and allow some space for problem solving.

Of course, accurate information presented in nonthreatening terms and in ways the person can process is important to de-threaten the experience of pain. This is at the heart of “explain pain” approaches – and it’s useful. What’s important, however, is to directly address the main concern of the person – and it may not be the pain itself, but the beliefs about what pain will mean in terms of being a good parent, holding down a job, maintaining intimacy, being responsible and reliable. It’s crucial to find out what the person is really concerned about – and then ensure your “reassurance” is really reassuring.

Helplessness

Helplessness is that feeling of “there’s nothing I can do to avoid this awful outcome so I won’t do anything”. It’s a precursor to feelings of depression and certainly part of feeling overwhelmed and out of control.

When a person is feeling helpless it’s important to help them regain a sense of self efficacy, or confidence that they CAN do something to help themselves, to exert some sort of control over their situation. It might be tempting to aim for focusing on pain intensity and helping them gain control over pain intensity, but because it’s often so variable and influenced by numerous factors, it might be more useful to help the person achieve some small goals that are definitely achievable. I often begin with breathing because it’s a foundation for mindfulness, relaxation and has a direct influence over physiological arousal.

You might also begin with some exercise or daily activities that are well within the capabilities of the person you’re seeing. I like walking as a first step (no pun intended) because it doesn’t require any equipment, it’s something we all do, and it can be readily titrated to add difficulty. It’s also something that can be generalised into so many different environments. In a physiotherapy situation I’d like to see PTs consider exercises as their medium for helping a person experience a sense of achievement, of control, rather than a means to an end (ie to “fix” some sort of deficit).

To conclude
Questionnaires don’t add value until they’re USED. I think it’s unethical to administer a questionnaire without knowing what it means, without using the results, and without integrating the results into clinical reasoning. The problem is that so many questionnaires are based on psychological models and these haven’t been integrated into physiotherapy or occupational therapy clinical reasoning models. Maybe it’s time to work out how do this?

Sullivan M J L, Bishop S, Pivik J. The Pain Catastrophizing Scale: Development and validation. Psychol Assess 1995, 7: 524-532.

Main, C. J., Foster, N., & Buchbinder, R. (2010). How important are back pain beliefs and expectations for satisfactory recovery from back pain? Best Practice & Research Clinical Rheumatology, 24(2), 205-217. doi:doi:10.1016/j.berh.2009.12.012

Sturgeon, J. A., Zautra, A. J., & Arewasikporn, A. (2014). A multilevel structural equation modeling analysis of vulnerabilities and resilience resources influencing affective adaptation to chronic pain. PAIN®, 155(2), 292-298. doi:http://dx.doi.org/10.1016/j.pain.2013.10.007

When do we need to say we’ve done enough?

This post is food for thought for both clinicians and people living with pain. It has come about because of a conversation on Facebook where some clinicians felt that people with pain are only being offered the option to “learn to live with pain” when their pain intensity could either be reduced or go completely.  And this conversation is one repeated countless times around the world when those living with persistent pain seek help for their disability and distress.

I’m going to declare my hand right now: I think a the problem in chronic pain management isn’t that people get offered “pain management” or “learning to live with pain” or “accepting pain” too often – I think it’s not happening often enough, nor soon enough. But let me unpack this a little more…

We know that in New Zealand at least one person in every six lives with chronic pain that has gone on for more than six months (Dominick, Blyth & Nicholas, 2011). We also know the seven day prevalence of low back pain in New Zealand is 35% (men) and 48% (women) (Petrie, Faasse, Crichton & Grey, 2014).

Treatments for painful conditions abound. From the simple over-the-counter approach (medication, anti-inflammatory creams, hot packs, cold packs) to hands-on therapies (massage, osteopathy, chiropractic, physiotherapy), to exercise therapies (Pilates, core strengthening, gym programmes, spin classes, walking, exercise in water), and finally to the multitude of invasive therapies (injections, neurotomies, decompression surgery, fusion). There is no shortage of treatments that aim to get rid of pain, fix the problem and get life back to normal. And for the most part these treatments provide modest improvement in both pain intensity and functional gains. For low back pain it seems there is no single wonderful treatment that works for everyone – hence the proliferation of treatments! (cos if there was a single treatment that worked, we’d all be offering it – like we do with a broken bone or appendicitis).

Here’s a question: if pain “management” (ie helping people learn to live with their pain) was the main offering to people living with pain, wouldn’t there be a heap of places to get this kind of treatment? At least in New Zealand there are relatively few pain management centres although there are many, many places to go for pain reduction.

I’ve tried to find studies looking at how people are told they have persistent pain that won’t be cured. Strangely, I have had incredible difficulty finding such studies. They may be there in the research literature – but they’re fairly uncommon and hard to find. And given how poorly low back pain guidelines are followed despite being promulgated since at least 1997, even if there were studies examining the best way to convey this news, I’d be surprised if anything was routinely incorporated into clinical practice.

So, in my opinion there are many more clinicians offering to help reduce pain than there are those offering to help people “learn how to live with pain”.

I was asked recently “when you do decide to stop pursuing pain reduction?” I think I said “it’s ultimately the decision of the person living with pain” – but it’s complicated by the way we as a culture perceive this option. I think most people would be horrified to think “I’m going to have a lifetime of living like this” when our beliefs about pain are influenced by and attitude that “pain = suffering”, “pain is unnatural”, “pain is a sign of something badly wrong”, “pain is something to get rid of”. I know when I was told “I’m sorry but there’s nothing more we can do for your pain” I was terribly upset thinking I had a lifetime of feeling awful to look forward to! I was 22 and had low back pain that would not go away after 18 months. I’m now 52 and I still have pain – but I can tell you that I have done almost everything I’ve wanted to including SCUBA diving, tramping, fishing, dancing, working full time (overtime), and parenting.

When do we begin to think about living with pain rather than curing it? I think we need to take a hard look at what this sentence means.

Firstly it means living. Life continues whether we’re feeling like we’re moving forward, or we’re putting things on hold to pursue a particular goal. Life doesn’t actually stop – but the things we want to experience, the things we want to do change over time. Our focus at the age of 22 is quite different from our focus at age 52 – and I hope it will change again at age 82! We don’t get to hit the replay button and live life all over again. We get one shot at it. This could feel quite awful if we’re contemplating a life where looking for pain relief is our primary goal – especially when that process involves an endless round of hope then despair as treatments are tried – and then don’t quite work out. Even the process of looking for treatments is slow, fraught with anxiety, and it eats up time in a week. For me, taking time out from living to pursue a treatment that may work means a process of weighing up the costs against the benefits. The costs include time, energy, emotional investment in the result, and the discomfort of the treatment itself. The benefits? Well, that depends.

The second part of that sentence is “with”. Living with pain. To me this means establishing my willingness to experience something I don’t enjoy – and believe me, I’m not a fan of pain! If all I have to look forward to is pain, pain, pain I’m not keen on doing it. BUT I am keen on living and bringing pain along with me (because frankly, my pain is coming along for the ride anyway). Living with pain to me means making room to experience pain fluctuations while doing things that bring value and meaning to my life. It means I ache – but I have a beautiful garden. I have sore legs – but I’ve been dancing. I have an aching back and neck and arms – but my house is clean. Here’s the thing: even if I didn’t work in my garden, dance or clean my house I’d STILL be sore! And I’d be bored, feel like I hadn’t achieved anything, and would have had to ask other people to help because many of those things still need doing.

The thing is, pain ≠ suffering.

When do we make a decision to stop pursuing pain reduction? Well, if I’m honest I’m still on the lookout for something that will help reduce my pain. And I think anyone who does live with persistent pain would agree that we don’t really want to have this experience, just like people who have cancer don’t want it, or diabetes or stroke or any of the myriad other chronic conditions humans are prone to getting, especially as we age. When asked, I’m sure most people with chronic pain would say “Yes” to pain reduction as a goal. BUT, and this is important, living life as fully and richly as we can is just as important.  I would bet that anyone with any of those chronic conditions would also just love to have them cured too.

But pain is a funny thing, there are myths and unhelpful beliefs coming from clinicians and our cultural norms about pain being a bad thing that must go. Compared with the beliefs and attitudes about other chronic conditions, this is unhelpful. We don’t find health professionals constantly pursuing treatments to “get rid of” diabetes, the focus is on management. And we accept that people who have cancer may choose to no longer accept treatment – and we support them by providing good hospice care. How often do people with chronic pain get (a) support to make a decision to live with their pain and (b) support to learn to do this well without feeling like second class citizens who have failed. We even have a group of clinicians calling people who haven’t responded to their treatments “failed back syndrome” as if the person’s back has failed rather than the treatment failing.

What makes me decide to pursue a new treatment that promises to reduce my pain? Well, it has to fit into my life. It can’t interfere with what’s important to me in terms of time, energy or discomfort. The odds need to be pretty good for me to even look at it – I want to see more than a single research paper showing its effectiveness. I would have to trust the clinician, and they’d have to respect me and my lifestyle and priorities. I’d want to make sure that clinician was going to stick with me and help me decide whether it’s worth doing. I’d want to see that the treatment would help me achieve my goals and priorities – otherwise I’m not really interested.

Is this because I’m weird (say yes!)? Or that I have less intense pain than other people? (nope, because you can’t compare my pain with anyone else’s, and because pain intensity ratings are strongly influenced by distress, mood, anxiety, how much pain interferes with life, attention, culture yada yada yada (Linton & Shaw, 2011). I think it’s because right now I’m too busy living, I get more joy and satisfaction from doing things that make me feel like myself. But remember I’ve been doing this since I was 22. And it’s a process. And I’m weird. I am a pain geek.

The thing is, unless clinicians promote living well with pain as an equally valid option to trying to get rid of it, people will continue to think that it’s impossible to have a really good life unless their pain is gone. And that, to me, is a tragedy, because we only have one life to live.

 

Dominick, C., Blyth, F., & Nicholas, M. (2011). Patterns of chronic pain in the New Zealand population. New Zealand Medical Journal, 124(1337), 63-76.

Linton, S. J., & Shaw, W. S. (2011). Impact of psychological factors in the experience of pain. Physical Therapy, 91(5), 700-711. doi:10.2522/ptj.20100330

Petrie KJ, Faasse K, Crichton F, Grey A. How Common Are Symptoms? Evidence from a New Zealand National Telephone Survey. BMJ Open. 2014;4(6). doi: 10.1136/bmjopen-2014-005374.

Of cabbages and kings…

Well, cabbages for knee osteoarthritis, anyway! In this interesting study, three approaches to managing knee pain from moderate osteoarthritis were put to the test. To be truthful, actually only two active treatments were compared – the third was “usual care”.

In a carefully conducted trial, where participants were randomly allocated to one of three groups, and the study organiser remained blinded to which group people were allocated, topical diclofenac gel, usual care or a cabbage leaf compress were applied over the course of four weeks.  Key outcomes were pain intensity and scores on the WOMAC, a common measure of the impact of osteoarthritis on daily life.

Participants were asked to rate their expectations on whether cabbage leaf or the gel would be successful in improving knee pain prior to the study commencing. Each person in the cabbage leaf group was asked to take one or two cabbage leaves, remove the hard stem, bruise the leaves, then wrap them around the knee with a bandage and leave for at least two hours, preferably overnight. In the gel group, participants were asked to rub the gel over the knee up to 4 times a day. In the treatment as usual group, participants were asked to continue with their usual routine and care, but not to begin any new treatments over the period of time.

What did they find?

Well, as a breastfeeding mother I well remember the pain of engorged breasts – and the relief I got from cabbage leaves (although I will never forgive the man who brought two half cabbages home, held them up in front of me and said “I think they’ll just about fit”!). I wondered if the same effect might have been experienced by participants in this study – and to a certain extent, yes! While the effect sizes were not large, a significant group difference was found between cabbage leaf wrap and usual care (difference, -12.1; 95% CI, -23.1,-1.0; P=0.033) after 4 weeks. No group difference was found between cabbage leaf wrap and gel (difference, -8.6; 95% CI, -21.5, 4.4; P=0.190).

A small but consistent decline in pain intensity was found in the cabbage leaf wrap and gel groups, but not in the usual care group over the four weeks of the study.

This trial found that a 4-week application of cabbage leaf wraps was more effective than usual with respect to pain, functional disability, and quality of life. It was, however, not superior to a 4-week application of topical medication. Patients were satisfied with both interventions, and except for 2 adverse events in both groups the applications were well accepted and tolerated.

What does this mean?

Well, for me this study shows that a simple, home remedy may provide some help for people who either can’t afford the cost of gel, or who don’t want to take a medication. This treatment truly is “natural”! The study design doesn’t allow us to conclude that cabbage leaf wraps are better than gel, or that it was the cabbage leaf itself that made a difference (participants and physicians had to know what was being administered because it’s fairly hard to hide a cabbage leaf!), so the results could be due to “meaning response” or placebo. And the pain reduction was very small – but nonetheless important to the participants.

What’s cool for me is that this is something people can choose to do for themselves. It doesn’t seem to have adverse effects (those reported in the study could be unrelated to the cabbage), and people find it relatively easy to use. Given the cost of pharmaceuticals, and the need to attend a doctor to get a prescription, to know there is a reasonable alternative (or even adjunct) seems useful.

Lauche, Romy, Romeikat, Nadine, Cramer, Holger, Al-Abtah, Jallal, Dobos, Gustav, & Saha, Felix J. (2016). Efficacy of Cabbage Leaf Wraps in the Treatment of Symptomatic Osteoarthritis of the Knee: A Randomized Controlled Trial. The Clinical journal of pain. (in press)