coping

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.

… 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.

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.

Self-managing chronic pain


I have long been a proponent of helping people who live with pain to take control of their situation and actively self-manage as much as possible. My rationale has been that people who feel they are in control of some parts of their life are more likely to feel confident when their pain flares up, or when they have a life set-back. Today I took a second look at some of the papers on self-management published over the past few years, and I think it’s time to be a little critical.

The first issue to deal with is defining self-management. To me, self-management means knowing as much as possible about the health condition (whatever it is), knowing as much as possible about various treatments, working hard to learn and integrate ways of coping so that I (because yes, self-management is something I use for my fibromyalgia) can do the things I most value. By doing this, I can be more like who I want to be, rather than being defined by my pain, or what other people expect from me. But, self-management isn’t nearly as clearly defined as this in many people’s minds.

Here’s one definition “We defined self-management as the strategies individuals undertake to promote health (e.g., healthy living, exercising), manage an illness (e.g., manage symptoms, medication, and lifestyle changes), and manage life with an illness (e.g., adapt leisure activities or deal with losses caused by illness)” (Audulv, Asplund & Norbergh, 2012). Morden, Jinks and Ong (2011) found from a study of individual’s perceptions that managing chronic conditions is not solely related to medical recommendations and that self-management is central to maintaining a sense of ‘normality’ in everyday life or to reasserting one’s position in the social world when living with a chronic illness and demonstrating competency from a moral perspective.

Interestingly, a definition from COPD management describes self -management as “… programmes that aim to teach the skills needed to carry out medical regimens specific to a long-term disease and to guide behaviour change to help patients control their own condition and improve their well-being”(Effing,  Bourbeau, Vercoulen, Apter, Coultas, Meek, et al.2012). The distinction between chronic pain self-management and other chronic illness self-management lies in the need to address broader “living” issues rather than just learning to “carry out medical regimens”. And that is both the problem and the distinction between chronic pain self-management and other chronic disease self-management approaches.

Let me unpack this: For people living with COPD, or diabetes, there are critical medical management practices that need to be learned and integrated into daily life so that the underlying medical condition doesn’t get worse and lead either to complications, or even early death. The focus on self-management in these situations seems to be on the medical tasks that must be undertaken. The end results are often measured in terms of reducing the number of extreme events – like having hyperglycaemia, or being admitted with a chest infection and needing oxygen.

Now if I turn to the qualitative literature on self-management in chronic pain, what is very obvious is that self-management isn’t about the medical procedures that must be followed. It’s far more about living life – and integrating ways of getting to do what’s important without too many flare-ups that get in the way of doing these things. In fact, Morden, Jinks & Ong (2011) found that in people living with knee osteoarthritis, self-management wasn’t something people identified with – what might have been classified by clinical people as “exercise” or losing weight or keeping active weren’t thought of as “self-management” by people living with knee OA. They thought this was “just getting on with it”. I particularly liked one comment : “because people perceived their activities to be an integral part of their daily routine they were not surfaced as deliberate action.” In other words, when people focus on living life, coping strategies become habits and routines that are secondary to the doing of life.

Mike Nicholas and colleagues have looked into coping and self-management extensively as part of ongoing research associated with the Royal North Shore Pain Management Programme. they were interested in whether it’s possible to find out if adhering to strategies introduced within a programme was predictive of outcome: in other words, did people who strongly adhered to what they learned during a programme ultimately gain better quality of life, lower pain, less disability and feel better? Surprisingly, they did – I say surprisingly because in a couple of meta-analyses (for example Kroon, an der Burg, Buchbinder, Osborne, Johnston & Pitt, 2014; Oliveira, Ferreira, Maher, Pinto et al, 2012) self-management approaches made very little, if any, difference to pain and disability both over the short and long-term.

What does this mean? Well, quite apart from the blurry definitions of self-management, and the lack of standardisation inside self-management programmes, I think we need to ponder on just what we’re asking people to do – and how they (we) regard the strategies we hope people will develop. Cutting to the chase, in chronic pain management we risk people knowing “about” strategies, but failing to adopt them in daily life because we haven’t really thought about daily life and what this is to each individual. When I think about the vast number of changes to self-concept that chronic pain wreaks on people, I think it’s hard to be ready to adopt these new techniques until “who I am” is included in the mix. Maybe one reason for the modest improvements after self-management is that we’re not thinking about self-identity and values and that these need attending to so that using coping strategies is worthwhile. It’s yet another reason I think occupational therapists offer a great deal in chronic pain self-management – who are you? what do you want your life to stand for? what things do you do (or want to do) that makes your life yours? Finally, to paraphrase as my colleague Ben Darlow, living with low back pain (read: any chronic pain) means balancing the need to minimise pain fluctuations with the things that make life worth living. That’s what I call “flexibly persisting”.

Audulv, A., Asplund, K., & Norbergh, K.-G. (2012). The integration of chronic illness self-management. Qualitative Health Research, 22(3), 332-345. doi:http://dx.doi.org/10.1177/1049732311430497

Effing, T. W., Bourbeau, J., Vercoulen, J., Apter, A. J., Coultas, D., Meek, P., . . . van der Palen, J. (2012). Self-management programmes for copd moving forward. Chronic respiratory disease, 9(1), 27-35.

Morden, A., Jinks, C., & Bie Nio, O. (2011). Lay models of self-management: How do people manage knee osteoarthritis in context? Chronic Illness, 7(3), 185-200.

Nicholas, M., Asghari, A., Corbett, M., Smeets, R., Wood, B., Overton, S., . . . Beeston, L. (2012). Is adherence to pain self-management strategies associated with improved pain, depression and disability in those with disabling chronic pain? European Journal of Pain, 16(1), 93-104. doi:10.1016/j.ejpain.2011.06.005

Oliveira, V. C., Ferreira, P. H., Maher, C. G., Pinto, R. Z., Refshauge, K. M., & Ferreira, M. L. (2012). Effectiveness of self-management of low back pain: Systematic review with meta-analysis. Arthritis care & research, 64(11), 1739-1748.

Live Plan Be


There are times in my work when I feel like I’m banging my head against a brick wall. Even though I’ve been saying most of what I write about on here since forever, it seems to take SUCH a long time for anything much to change! BUT then along comes something totally cool to brush my frustration away, and today I want to talk about Live Plan Be developed by Pain BC in Vancouver, Canada.

A couple of years ago I was given the privilege of being asked to prepare a document analysing the content and approach of self management programmes. I reviewed the Cochrane systematic reviews which all supported a multidisciplinary self management approach as the foundation for chronic pain management. I then turned to the qualitative research to investigate what it’s like to be part of a programme from the participant’s perspective. I found that people attending these programmes enter a journey of self-discovery, that some of the skills don’t seem to make sense at first – but do when the person returns to their own setting. I also found that people living with chronic pain relish the opportunity to feel that their pain is acknowledged, that others on the programmes know what it’s like to live with chronic pain so they don’t have to spend ages trying to explain themselves, and to have the chance to be with others who ‘get it’ means breaking out of the isolation that chronic pain can bring.

I also took a look at the ways these programmes can be delivered. While many programmes are face-to-face, with technology making online programmes increasingly more responsive and flexible, I wanted to see whether there were major differences in the outcomes of each programme. Although it’s difficult to tell because the populations using both approaches are not exactly the same, from what I could find, the outcomes were comparable. This is really exciting because it means more people can get access to approaches that have solid research underpinning them without having to travel to and from, and without the staffing needed for face-to-face programmes.

As a result of my report, I suggested that Pain BC might like to investigate developing a whole new programme for helping people live well with chronic pain, and to make this an online programme with some of the features that the research into online behaviour change programmes has identified as useful. Things like having a discussion forum so participants can connect and share their experiences of the reality of living with chronic pain. Having action prompts so that people don’t just read something – but also get prompted to DO something with that information – and most importantly, have this tied to where the person is currently at in their journey towards making changes to live with their pain. I recommended having some self-assessments so people can track their progress, and a place where they could record the things that worked, and those that didn’t work, so it’s easy to share with other people including health professionals.

I’m SO excited to see how Live Plan Be has come together – and it’s now LIVE!

The team that has put this together has done an amazing job, exceeding my wildest dreams of what the programme might look like. It’s sophisticated, easy to use, has lovely graphics and video recordings of real people doing real things, has SO MUCH information on it – and it’s free! If you have chronic pain, or you work with people living with chronic pain, I would love you to take a look at it, and try it out. Then let me know what you think. Whatever feedback you give, you’ll know that the team will work hard to keep on making it better and more useful, so please let them know.

Meantime, I’m hoping that this will bring some hope to people who have struggled with chronic pain, and would like to learn to live well.

End of year roundup


It’s summer in New Zealand, and although the vagaries of Kiwi weather are always with us (33 degrees predicted today – but a southerly tomorrow and a drop of probably 10 degrees in half an hour!), we’re gearing up for our usual Christmas and New Year close-down. I’m also taking a break over the next three weeks, taking to the rivers (bring on the trout!) in Sweet Caroline the Caravan, complete with blue sky ceiling with tiny puffy clouds!

To end the year it’s common to come up with a top 10, so these are my top 5 posts from the year. They’re not always the ones with the most hits, they’re ones that I’m particularly pleased with. Over the next three weeks, why not take a browse through some of my favourites, and if you’re still stuck for reading matter, head to the “search” page and type in a term – or you can simply click on a Category or a Key Word and voila! there will be a bunch of posts to trawl through. Enjoy!

  1. Talking past each other: One of the weirdest things for me is being both a professional working in the field of chronic pain, and also being a person living with chronic pain. There’s a certain dread among some health professionals when they find out a person working in the field also has the condition – a bit like “so you’re in it for yourself”, “you’re living out your own issues”, “you’ll get over-involved”. Harsh. I got interested in pain management some years after I developed persistent pain. My interest began because the people I was working with (return to work programmes in the 1980’s) often had chronic pain, and I wanted to know more about how to help them. For many years I didn’t let anyone know I also had this “thing” they were trying to live with. I finally decided that being real, honest, authentic and not pretending I had it all together was far more helpful (and less stressful) than any kind of facade of professionalism I could apply. I can’t say whether what works for me will work for anyone else. I don’t always have answers. I can only say I know what it’s like to walk alone, trying to work out what will help and what won’t – and that’s a very lonely road to walk. For that reason I’ll be there, a one-woman cheering squad on your side.
  2. Telling someone they have chronic pain: Being given good advice when I first found out I had chronic pain would be one of the most important reasons I think I have learned to find wiggle room with my pain. It’s not the kind of message healthcare professionals are trained to deliver. By and large we’re taught to fix, cure, mend, heal or DO something. Chronic pain is one of those problems for which there are no easy, single bullet answers. There’s usually a mix of things that will give support – and a bunch of things that won’t do a thing, or may even harm. This post synthesises some of the things that I have found out about giving that “bad news”.
  3. Am I nuts or do I just have pain?: People living with chronic pain deal with stigma often. There’s an unwritten “moral” compass that people living around us use to identify whether someone is faking, mad, or just lazy. Is chronic pain a mental illness? Personally I would argue not – but then again, how do we define what is, and isn’t, a mental illness? Some super-slippery concepts here, but I prefer NOT to classify chronic pain inside a set of psychiatric labels. I think it’s stressful enough to live with chronic pain without the sense that it’s a mental health problem, because, after all, it’s experienced in the body. And while some of the factors involved in chronic pain are neurological, brain-based, and affect mood, thoughts and behaviour, there are many other health problems that are also influenced by the same set of issues. Personally, I don’t like labels that lump people together as if, because they have a predominant symptom, the problems arising from it are all the same. Many of you will know I use a case formulation approach – by using this approach a clinician acknowledges that there are many factors influencing the “what it is like” to live with chronic pain, and it gives priority to the everyday concerns of the person rather than trying to squish him or her into some sort of square box. I’ve got curves, they just don’t squish like that!
  4. Case formulation: I have written a few posts on case formulation – so here’s a list of them! I hope they’re useful 🙂  Case 1; Case 2; Case 3; Case 4; Case 5; Case 6; Case 7; Sorry if these are slightly out of order, and believe me, there are some more I haven’t yet listed!
  5. Who are you? The effect of pain on self: Nothing prepares us for the onset of a chronic illness. I mean it. Even if you KNOW you’re going to get something, when it’s finally given the label there’s a certain reality that can’t be shaken. All the assumptions of what we can or can’t do, our capabilities, our future goals, our assumptions about how life will be – these get shaken when we get told “I’m sorry, but you have _________”. Learning to deal with this new reality is both fascinating (to an outsider) and extraordinarily hidden (to the person and those outside). We don’t really know how people come to terms with having to give up aspects of self, adopt new habits, develop a focus on parts of self that weren’t previously valued. It’s an area of learning to live with pain that has been touched on, but needs far more attention, IMHO.

OK, so a random selection of posts from the last year, and a couple from years before. If I get time before I head out in Caroline, I’ll post another set – but in the meantime, I wish you a peaceful and safe holiday period, and hope you’ll build dreams and start actions for a fabulous 2016.

Fibro fog or losing your marbles: the effect of chronic pain on everyday executive functioning


ResearchBlogging.org

There are days when I think I’m losing the plot! When my memory fades, I get distracted by random thin—-ooh! is that a cat?!

We all have brain fades, but people with chronic pain have more of them. Sometimes it’s due to the side effects of medication, and often it’s due to poor sleep, or low mood – but whatever the cause, the problem is that people living with chronic pain can find it very hard to direct their attention to what’s important, or to shift their attention away from one thing and on to another.

In an interesting study I found today, Baker, Gibson, Georgiou-Karistianis, Roth and Giummarra (in press), used a brief screening measure to compare the executive functioning of a group of people with chronic pain with a matched set of painfree individuals. The test is called Behaviour Rating Inventory of Executive Function, Adult version (BRIEF-A) which measures Inhibition, Shift, Emotional Control, Initiate, Self-Monitor, Working Memory, Plan/Organize, Task Monitor, and Organization of Materials.

Executive functioning refers to “higher” cortical functions such as being able to attend to complex situations, make the right decision and evaluate the outcome. It’s the function that helps us deal with everyday situations that have novel features – like when we’re driving, doing the grocery shopping, or cooking a meal. It’s long been known that people living with chronic pain experience difficulty with these things, not just because of fatigue and pain when moving, but because of limitations on how well they can concentrate. Along with the impact on emotions (feeling irritable, anxious and down), and physical functioning (having poorer exercise tolerance, limitations in how often or far loads can be lifted, etc), it seems that cognitive impairment is part of the picture when you’re living with chronic pain.

Some of the mechanisms thought to be involved in this are the “interruptive” nature of pain – the experience demands attention, directing attention away from other things and towards pain and pain-related objects and situations; in addition, there are now known to be structural changes in the brain – not only sensory processing and motor function, but also the dorsolateral prefrontal cortex which is needed for complex cognitive tasks.

One of the challenges in testing executive functions in people living with chronic pain is that usually they perform quite well on standard pen and paper tasks – when the room is quiet, there are no distractions, they’re rested and generally feeling calm. But put them in a busy supermarket or shopping mall, or driving a car in a busy highway, and performance is not such an easy thing!

So, for this study the researchers used the self-report questionnaire to ask people about their everyday experiences which does have some limitations – but the measure has been shown to compare favourably with real world experiences of people with other conditions such as substance abuse, prefrontal cortex lesions, and ADHD.

What did they find?

Well, quite simply they found that 50% of patients showed clinical elevation on Shift, Emotional Control, Initiate, and Working Memory subscales with emotional control and working memory the most elevated subscales.

What does this mean?

It means that chronic pain doesn’t only affect how uncomfortable it might be to move, or sit or stand; and it doesn’t only affect mood and anxiety; and it’s not just a matter of being fogged with medications (although these contribute), instead it shows that there are clear effects of experiencing chronic pain on some important aspects of planning and carrying out complex tasks in the real world.

The real impact of these deficits is not just on daily tasks, but also on how readily people with chronic pain can adopt and integrate all those coping strategies we talk about in pain management programmes. Things like deciding to use activity pacing means – decision making on the fly, regulating emotions to deal with frustration of not getting jobs done, delaying the flush of pleasure of getting things completed, having to break a task down into many parts to work out which is the most important, holding part of a task in working memory to be able to decide what to do next. All of these are complex cortical activities that living with chronic pain can affect.

It means clinicians need to help people learn new techniques slowly, supporting their generalising into daily life by ensuring they’re not overwhelming, and perhaps using tools like smartphone alarms or other environmental cues to help people know when to try using a different technique. It also means clinicians need to think about assessing how well a person can carry out these complex functions at the beginning of therapy – it might change the way coping strategies are learned, and it might mean considering changes to medication (avoiding opiates, but not only these because many pain medications affect cognition), and thinking about managing mood promptly.

The BRIEF-A is not the last word in neuropsych testing, but it may be a helpful screening measure to indicate areas for further testing and for helping people live more fully despite chronic pain.

 

Baker, K., Gibson, S., Georgiou-Karistianis, N., Roth, R., & Giummarra, M. (2015). Everyday Executive Functioning in Chronic Pain The Clinical Journal of Pain DOI: 10.1097/AJP.0000000000000313

Using the Theory of Living Well with Chronic Pain


Last week I had the privilege to talk to a national gathering of occupational therapists, physiotherapists, nurses and educators from Arthritis NZ. I presented my Theory of Living Well with Chronic Pain which is the theory of re-occupying self to achieve self-coherence after developing chronic pain.

To give you a bit of background, in this theory which was developed using classical grounded theory, I identified that the thing that goes as soon as pain doesn’t fit the usual acute pattern is the sense of self-coherence – life doesn’t make sense any more. As so many people have said to me about their early experiences with chronic pain, “I don’t feel like myself any more”. The things we take for granted like our habits, routines, the things we can expect from ourselves (like how long it takes to do something, how much we can get through in a day) get scrambled by this invasive experience that takes over. In an effort to make life more coherent, many people stop doing things they enjoy so they can focus on just. keeping. going.

I identified that there are three important processes that help people when they’re making sense of their pain: the first is diagnostic clarity, then symptom understanding, and finally occupational existing. When these three processes are complete and in the presence of both a trustworthy clinician and occupational drive, people begin deciding – deciding whether to seek more treatment so they can return to the old normal, or take the bull by the horns and get on with life as it is. After deciding, people begin occupational engaging, using coping and they can finally begin future planning again.

I have a suspicion that if we asked a person who was living with chronic pain where they would put themselves in this process, we’d get a fairly accurate idea of what their clinical needs might be. Perhaps we’d understand what their focus is, and we’d be able to provide them with input targeting what they identify as important rather than what we think they need.

For example, if we look at the illustration below (andwhere are you“click” for a pdf copy of it), when someone is unsure of their diagnosis we might need to check their understanding of what the diagnosis means. Does it fit with their experience? What’s the prognosis and does the person understand this? Has that label been interpreted accurately? Does the person know that it’s chronic/ongoing and that the pain is now not a signal to stop? If not, we need to think about how to explain this, to help the person make sense of it, and this might be a good time to consider providing the person with information on what pain is.

If the person can’t yet answer the questions related to understanding symptoms, then our job might be to help guide them through the process of experimenting with different activities, noting changes and variations in pain intensity and quality, and fatigue, that occur. I think this is best carried out while doing the basics (or occupational existing).

Doing the basics refers to occupational existing, or just doing what’s necessary. NOT setting new goals, just simply keeping life ticking over. If the person is having trouble with sleep, mood, anxiety, keeping a normal routine going, we’re not going to have much luck in helping them focus on bigger or more valued goals, or getting them to add more obligations to the mix. I’ve indicated sleep and routines as the two areas for the person to think about, but it could be that asking the person “what have you stopped doing” is enough of a prompt – I’m just concerned that, at this stage, the person isn’t yet ready to look ahead, they might just need some breathing space before moving on to deciding.

If the person is currently in the process of deciding, they’re weighing up the costs of looking for more treatment (to help them return to “normal”, or how they were before their pain began). The longer it’s taken to get to this point, the less chance they have of getting back to normal in its entirety. At this point, I think our job is to help the person make this process explicit. Using a decisional balance  chart (similar to the one I’ve linked to, but you can change it), and reflecting on what’s important in the person’s life, we can help people resolve their ambivalence and make their own minds up as to whether they’re ready to get on with life, or carry on looking for treatments. Remember, every treatment carries the risk of failure: so even if you’ve got the newest, most groovy treatment ever, respect that many people would rather not go ahead with an uncertain outcome if they can instead return to doing something that’s really important to them. It’s just that making this decision explicit is rarely carried out.

Once someone’s finished deciding, they can begin doing what’s important or occupational engaging. To enter this process, the person needs to consider what occupations (activities to those of you who don’t use occupational therapy/occupational science language) are most highly valued, make them feel like themselves. While some people are very clear about what it is they want to do most, others might find this a bit of a struggle – especially if it’s been a long time, or if the thing they love the most is something other professionals have told them is “unrealistic”. Here’s my take on this: I think if a person wants something of value, they will find a way to do it. Who am I to disagree? My job is to help them develop ways of achieving it, or at least of achieving the value that this occupation expresses. Each occupation we do is underpinned by values, reasons we believe it’s important. It may not be the occupation itself, but instead may be how we do it that expresses an important value. Our job at this point is to help the person identify the values expressed within this important occupation, and help the person problem solve ways to express those values.

Then most people will begin developing coping skillsso they can do what’s important. Again, our job is to support the person to develop a range of ways to achieve or engage in valued occupations. There’s no “right” way or “wrong” way, there are simply ways to do things that work in that particular context. What’s important is that the person knows plenty of options, and can choose when they fit the context. Where we might need to help is in providing options for coping, and in helping the person develop flexibility in how they apply these strategies. Flexibility might need to come from helping the person think differently about their pain, or about using some of the strategies.

And finally, once a person is beginning to do what’s important and use coping strategies, then it’s time for them to begin future planning. This process (and the other two of occupational engaging and coping) are going to be relevant for the rest of the person’s life. Future planning needs to include setback planning, maintaining behaviour changes, thinking about other ways to keep expressing who the person really is. I think it’s an aspect of pain management that we rarely consider – having chronic pain can mean learning to grow, to keep developing, to become more resilient and allows us to develop different parts of ourselves. It’s more than just “returning to normal” because, after all, what’s normal?

“Tell me like it is, Doc” – What to say when you need to tell someone their pain is probably ongoing


About 30 or more years ago I was diagnosed with chronic pain. I’d had low back pain for a couple of years and I was finding it SO hard because of my work in Older Person’s physical rehabilitation. I had treatment after treatment with no change in my pain. I had an X-ray that told me I had a “transitional” vertebra. I thought this explained why my pain persisted and I was hoping someone would be able to “unstick” this vertebra and my pain would be gone. I was referred to a chronic pain management centre and the wonderful Dr Mike Butler, Rheumatologist and pain specialist there told me “There isn’t a medical answer to your pain problem.” Luckily for me he didn’t leave it there – he suggested I read The Challenge of Pain by Melzack and Wall.

But I will admit, I walked away from that appointment feeling absolutely devastated, thinking “I’ll have to live like this forever”.

What I didn’t know at the time was that the way Dr Butler gave me this news is a rarity. I am so grateful that he did, even though I was completely floored and had no idea about what I could do to get on with life. (I began searching the libraries for information on chronic pain, and came across a book by Connie Peck in which she described a behavioural approach to increasing function – and I used this after having devoured the Melzack & Wall book).

Things that were done well:

  1. My physical examination results were fully described and explained to me. While I didn’t have any beliefs about possible cancer or ending up in a wheelchair, it was good to know that my examinations were completely normal with the exception of allodynia and widespread pain over my entire back.
  2. I was given the news pretty straight. Being told “there isn’t a medical answer to your pain problem” meant I stopped looking for the complete cure. And I never once got the suspicion that anyone thought the problem was psychological, fabricated, or that I was just a bit pathetic.
  3. Being given additional resources that gave me information over and above the basics really helped. The book by Melzack and Wall was a real stretch for me at the time, lots of explanations I didn’t fully understand – but it satisfied my curious mind, and gave me a full explanation that helped me make sense of what was going on. And it opened the door for me to realise that my pain wasn’t an indication of ongoing damage. It also gave me an understanding that what I believed, thought and felt could influence my pain. And that was a powerful thing.

If you’d asked me whether I “accepted” my pain, I think I would have clubbed you! I did NOT want this pain. I was still looking for things to reduce my pain – or at least not flare it up. The realisation that my pain would do what it wanted, when it wanted, was something I could only learn over time. And this is an important point: there are some things we need to go through as part of a process. Simply telling someone something does not inevitably mean it’s going to hit home at that time, unless the person is ready (think stages of change here).

If I frame this process within the findings from my research, the first part of learning to live well with pain is making sense. Making sense requires diagnostic clarity, and part of that is having a prognosis. This helps shape future expectations. It’s incredibly difficult to plan a future when the future is hazy. Delaying the point at which the ongoing nature of persistent pain is made explicit seems to me to be delaying the point at which the future becomes clearer – and I think this in turn prolongs disability and distress.

Drawing from my reading around the subject, I think the following might be a useful and pragmatic approach to advising someone that their pain is likely to remain. I hope people living with chronic pain will chime in here and help me out – what would this approach have been like for you?

  • Ensure examinations are explained – especially what you’re looking for, what you’ve found, and what this means. And particularly explaining what negative findings don’t mean.
  • Avoid looking for the mythical and improbable “rare” disorder. Especially if this means delaying the point at which you have to say “and this pain isn’t likely to go away”. I think this is something many medical practitioners are afraid of. Rare disorders are just that: rare. And most of the ones that will kill or disable have very clear indicators apart from ongoing pain. You KNOW this, so let your patients know this.
  • Find out the main concern of your patient. In my case, it wasn’t that I was going to die or end up in a wheelchair, it was much more about “how am I going to live like this – suffering – for the rest of my life!” The “suffering” part was the REAL problem, not the pain per se.* What a shame so few health professionals even bother to find out about their patient’s main concern – maybe it’s feeling old before your time, maybe it’s about becoming a parent, maybe it’s about being just like my mother, maybe it’s about sleep, work – whatever.
  • Directly address the main concern of your patient. Reflect that you’ve heard what their main concern is. Say it back to them, and yes, even use cliched phrases like “It sounds like” – whatever you do, make it clear you’ve heard the person’s main concern. Then begin to discuss what can be done to address that concern. It might take another appointment to do this, but that’s a whole lot better than sending your patient back home without having had his or her concerns understood – or worse, to ignore those concerns and send your patient off for another round of treatments that just don’t help them resolve whatever that concern is.
  • Give space and time for your patient to get their head around this new reality. Do this by letting them know, directly and clearly, that you’ll be there for them while they do this. You know, it might mean not “treating” the person for a couple of appointments, but instead, giving your patient the respect of providing a safe space for them to be there and process what’s going on. Don’t just begin “your” treatment programme as if nothing has happened. And don’t just send the person off without making a time to catch up again. Remember, treatment is as much about an interaction as it is about the therapeutic whatever that you use (Benedetti, 2013).

I have no idea if this approach is the right one, but it seems to me to address some of the things that people living with pain have told me. They’ve said things like “no-one ever told me it would go on”, “I just got pills but I was worried about how I could stay at work”, “I didn’t know why I was doing exercises”, “no-one bothered to find out how my relationship was going”, “they just wanted me out of the office as quickly as possible”, “I was in the too hard basket”.

The most precious thing in life is time. Perhaps we health professionals need to value the time we spend with people a little more than the procedures we carry out. Perhaps reimbursers could equally see that the active ingredient in most treatments is the interpersonal part – and maybe this should be funded well.

*Suffering, to quote Eric Cassel (1999) is about the threat to self-concept – that I would not, could not, do the things that express who I am. Now I don’t think my doctor really addressed this, and I am lucky I’m a geek and love reading, because I learned this through the books I devoured. What I learned was that I could express my self-concept despite my pain. I just had to learn to do things differently.

 

Benedetti, Fabrizio. (2013). Placebo and the New Physiology of the Doctor-Patient Relationship. Physiology Reviews, 93(3), 1207-1246. doi: 10.1152/physrev.00043.2012

Cassell, Eric J. (1999). Diagnosing Suffering: A Perspective. Annals of Internal Medicine, 131(7), 531-534. doi: 10.7326/0003-4819-131-7-199910050-00009

 

“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.