Accepting chronic pain


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How willing are you to have persistent pain? Can you accept pain without fighting against it? If you were told your pain was going to be there forever, would you avoid important activities or would you start to get back into life again?

Recently I reviewed about 200 questionnaires completed by people attending the Pain Management Centre where I work. I was looking especially at what they’d written down as goals for coming to the Centre, and unsurprisingly, most of them were to ‘reduce my pain’ – to tolerable levels, to manageable levels, or so the person could begin ‘living a normal life’. I hate to break it to you – even the most effective medication seems to only reduce pain by about 30%, and most people wanting pain reduction are after at least a 60% reduction.

What this means is there is quite a gap between what people expect – and what they get.

Along with all those goals of reducing pain were a huge number of everyday activities that people wanted to return to – provided that their pain reduced.

I haven’t asked people those questions at the top of this post.  I must admit I’m a little wary of doing so – they’re not the sort of thing people really want to hear first off when coming to Pain Management!  Yet, it looks like they’re the sort of thing we might need to ask people at some point in their search for pain reduction.

It’s not easy to think about accepting chronic pain.  Most of the medical people I work with think it’s a horrific thing to consider – a life with pain.  And so the search for something, anything, to take the pain away.  In fact, one doctor said to me it is unethical to stop looking for pain relief, and in fact he wouldn’t dream of withdrawing something that apparently reduced pain – even if it didn’t change the person’s disability one bit.

A couple of definitions here might be helpful: pain is ‘an unpleasant sensory and emotional experience associated with actual or potential tissue damage’; disability is the effect of pain on function, related to the amount of interference an individual experiences from pain on their activityPain interference is associated with depression and anxiety, amongst other factors.

Recent studies especially those from the Bath University research group of McCracken and Eccleston, are showing that acceptance of chronic pain is strongly associated with better outcomes especially in terms of activity engagement and reduced distress.  Acceptance in this context is about being willing to experience pain without trying to avoid it, control it or reduce it. The degree of acceptance is associated with engaging in activities that the person values despite experiencing pain, and ‘disengaging from the struggle to limit contact with pain’ (Fish, McGuire, Hogan, Morrison & Stewart, 2010).

In my experience, there are few people who come to a Pain Management Centre who are willing to accept their chronic pain – in fact, when someone says to me ‘I’ve come to accept my pain’, I inwardly cringe because it so often means ‘I’m resisting any accommodation of my pain into my daily life’, or ‘I’m resigned to having pain forever and life is horrid’.  Part of coming to a Pain Management Centre is an expression that life isn’t working out so well, so that something is needed to help the person cope better, feel better and start to live again.

Introducing the idea of acceptance is not always straightforward.  My warped occupational therapy/psychology background means that I find it easier to begin with looking at important values and how these are expressed behaviourally in activity.  Contextual cognitive behavioural therapy, or Acceptance & Commitment Therapy, or other variants of these two, often suggest starting with ‘cognitive defusion’, or the language that people use to describe themselves in which the ‘who’ they are is labelled directly alongside the ‘what’ they want to do.  Difficult theoretical concepts such as relational frame theory underpin this type of therapy, in which the person is helped to slightly distance themselves from the content of their thoughts (particularly negative labels).

My take on starting the journey towards acceptance is to help the person look at what is important in their life, then look at how they’re demonstrating or enacting these values.  For example, if being a good parent is important, how is the person demonstrating this?

If a mother is spending most of her time cleaning the house because this has been her usual way of showing that she cares for her family, but cleaning is demanding and she feels frustrated and irritated at herself and her family because of her pain, then maybe there can be another way to show her values.  I might suggest to her that she list all the ways she can show her family that she cares, and choose one to start doing.

While she starts to explore this, and to consider loosening up her belief that ‘the only way to be a good mother is to have a clean home’, it’s possible to help her review her thoughts that ‘only bad mothers have untidy homes’, and maybe consider a more flexible thought that ‘mothers who care for their family spend time with them’.  By doing this, and identifying an activity that she enjoys with her family, I can start to introduce the idea that she could do this activity – and bring her pain along with her.

At this point I can start to introduce the idea of mindful attention to the whole of the activity, rather than just her pain.  And we are one step closer to helping her recognise that she doesn’t need to struggle against her pain, she can instead fill her life with good things, and the pain (and especially the negative emotions around pain) can become just another aspect of her experience.

A brief questionnaire that could be used to measure this is the Chronic Pain Acceptance Questionnaire-8, an 8-item questionnaire that is derived from the 20-item CPAQ.  While the study I’ve referred to is definitely a preliminary one, and there is more work to be done on it, both the 20 and 8 item CPAQ tap into some important dimensions that examine how willing a person is to get involved in important activities, and to experience pain at the same time.

There are times when all of us will willingly go through pain – having a flu jab, running or exercising further than we’ve gone before, carrying a child when it’s too tired to walk, standing on the sideline at a football game in the cold, or waiting in a queue to pick up tickets to a good concert.  Because the end result is worth it – maybe one of our jobs as pain clinicians is to find out what’s ‘worth it’ to our patients, so they too, can start to live lives doing things that they value despite pain.

Fish, R., McGuire, B., Hogan, M., Morrison, T., & Stewart, I. (2010). Validation of the Chronic Pain Acceptance Questionnaire (CPAQ) in an Internet sample and development and preliminary validation of the CPAQ-8 Pain DOI: 10.1016/j.pain.2009.12.016

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20 comments

  1. I have Calcium Pyrophosphate disposition disease, a particular form of chondrocalcinosis. For me, this has meant painful joints since I was a teenager. Now I have severe spinal stenosis in multiple levels. Since pain has been with me a very long time, I learned to get beyond suffering because I had pain. My pain threshold is high. The issue now is function. Trying to get others to hear me when I talk about it is very difficult. Other Disc Degeneration Disease sufferers are a bit put off by my explanation of meditation as a means of controlling suffering from pain, making it manageable without high amounts of medications, most of which are highly addictive. I cannot get even medical personnel to understand that my drive for care is NOT PAIN RELIEF, but return to function. Something that the neurological symptoms really prevent. Your article describes the problems of those of us who deal with our pain fine, but still have a disability, a concern about eventual paralysis, and the need to have real help to continue functioning…a prime directive.

    1. Hi Patricia,
      It sounds such a frustrating place to be in where your emphasis is on ‘how can I do more of what I want’ rather than ‘how can I reduce my pain’ – yet what treatment providers are hearing is ‘how can you take my pain away’! Meditation and other forms of mindfulness are great for managing the distress, but they don’t help with improving function nearly as well. My track is to try starting with things that are enjoyable, building them into your day in a paced and gradual way. At least in that way you’re able to begin to improve function in a non-distressing way, and may gradually increase in other activities as well.
      Sometimes, of course, function doesn’t change too much especially if there are fixed bony or joint deformities, or where neurological compromise has occurred and there simply isn’t the number of neurones firing to make a movement happen. Then I’m guessing mindfulness and meditation might be around coping with the ‘second arrow’ of being unable to do what it is you want – so moving on to finding out how else you might live out the important values in your life.
      I’m not sure I have answers – this is a journey I am taking step by step too! At least we know we are not alone, and our discoveries are ours to share.
      Thanks for taking the time to comment, and I do hope you come back again soon!

  2. What a wonderful post – as usual.

    The Buddhist-influenced mindfulness meditation group I go to frequently discusses the difference between “pain” and “suffering.” Pain is an inevitable part of being alive. Suffering is all the added baggage you throw on top of it – worrying about whether the pain will ever stop, looking up scary diagnoses online, etc. Suffering is a choice.

    Another way of describing it is that pain is an arrow that hits you (the “first arrow”). Any extra suffering that you pile on is a “second arrow,” etc. Sometimes my partner and I will look at each other when one of us is worried about something and simply say, “Second arrow.”

    I would say that the most difficult time I have coping with pain is when there’s unfamiliar pain. If it’s something I’m used to (fibro, the flu), then I know what to expect and how to cope with it. If it’s something completely different, it tends to activate a volley of arrows where I start wondering how horrible it’s going to be.

    I agree that it’s also possible to go too far in the opposite direction a la “I’ve come to accept my pain.” One of my challenges is when I notice myself with excess pain, or when I know that I’m adding suffering on top of my pain. I start mentally berating myself for falling into old patterns, and have to take a step back and treat myself with compassion.

    Thanks again for posting this!

    1. Hi – thanks for the compliments, and yes I think that analogy of the first and second arrow is great! What I observe in people who tell me they’ve ‘accepted’ their pain is that while they know their pain is going on, they haven’t yet learned to accept that the emotional impact is something they and only they can influence – and hence they resist fully experiencing the pain. I too have trouble accepting new pain, and situations where my emotions become distressing because I am hanging on too tightly to my sense of what ‘should’ be happening, rather than sitting with what is happening.
      I am still in a bit of a quandary: how much should I stand up for what I believe in (and sometimes find myself the focus of negative attention because what I’m saying might be unpalatable), and how much should I become slightly detached and allow what is to be (and feel as though I’m compromising what I value). I haven’t worked that one out yet!

    2. Practicing contemplation is still the work or “dharma”. The “gem” awaits us. Knocking ourselves is most painful of all, no one does it better, we do not really have to have someone to chastise us when our practice is faulty. It makes it worse when we have an outside critic who thinks they might know what we are going through, when they have no idea. Others want to have empathy with us, when they really should not be led by that desire, or grasping. Keeping pain manageable may mean use of opium derivatives in moderation, and in some Buddhist circles this is frowned upon, and criticized.

      There is a time and place for the medications. If we use them sparingly, and correctly they can get us through the times of inflammation, or progression of disorder.

      Unfamiliar pain is a key to recognizing increasing disorder. I tend to take a step outside of myself. “I have pain, it is here or there. What does it mean? Should I go to primary care? What do I think it might be? Another disc?”

      I just went through this. It was another failed disc. I did not attach to the pain, therefore no suffering, just the realization that a fall had created problems. Now for another round of physical therapy. And possibly another surgery.

  3. Thank you for this interesting article!

    I long ago (decades) accepted that I had to live with my pain; as I saw it, I could either be happy (and in pain) or miserable (and in pain) as the only thing I could control was my attitude. I do force my reluctant body to do things that will be mentally satisfying, but then I have to cope with the consequences; e.g. terrible tiredness and limbs that collapse under me as a pain-avoidance reflex takes over.

    I am wondering what one can do in life when one has chronic pain that is in itself debilitating due to exhaustion, never mind the disability from the underlying conditions. I have already narrowed my definition of what activities make me happy to things I am actually physically capable of doing.

    Of course, I would love to experience a pain-free day; after several decades, who wouldn’t? I have accepted that it will be unlikely and yet I still applaud the people looking for genuine pain-killers. 100% pain removal? Bliss. 80% would mean being able to do things I haven’t been capable of for years. Even 30% reduction, although it might not sound much, can mean the difference between being able to do something fun or being unable to force oneself to do anything at all.

    Unfortunately, all the varieties of pain relief that I have tried have no effect on the pain or anything else; or have both no effect on the pain and deleterious side-effects; or sort-of help with the pain and yet have horrible side-effects.

    1. It sounds like you have made lots of progress with living a good life despite pain! I think one part of living with pain is to look at what is important (ie what your values are), and then to see how you can live something of those values despite the pain. Pain reduction itself doesn’t always reduce the burden of having pain – it’s the emotional impact of having restrictions on what you want to do and how you do it that seems to be the main difficulty rather than the intensity or quality of the pain experienced.
      I can only speak for what has been helpful for me, what I’ve read in the mountains of research that I’ve uncovered, and the experiences of the people I’ve worked with – even when you’re feeling your most pain, most distressed and most burdened, it’s possible to experience something other than pain. And it’s this that helps me through – even the simple act of feeling the sensations of breathing in and breathing out. Or feeling the texture beneath my fingertips, or the touch of clothing, or warmth of sun on skin – or the colours of the sky, the glint of light on water, the taste of fresh water. All of these are ‘clean’ sensations that I can experience even while my pain is present. Opening my mind up to have all of these sensations AND the pain is something that has helped moment by moment.
      Can I suggest you head to How to Cope with Pain and Healinglesstravelled for more written for people expereincing pain – my blog is written more as a resource for people who are treating people who have pain, so can be a bit one-step-removed from maybe what you would find useful. Best wishes and thank you for sharing.

      1. Thank you for your reply and for the suggested reading materials. Are there any for those afflicted indirectly? I would love to find some way to help my loved ones accept the way I have to live my life without themselves becoming frustrated.

        Just as you do, I live for the moment and take enjoyment in little things (as I said, narrowing my definition of what makes me happy helped).

        As a shorthand that others more readily understand I refer to my life in terms of ‘good’ days and ‘less good’ days. In other words, days when I can do things that other people find important and days where I can really only just manage doing a little to amuse myself. For instance, today would be a ‘less good’ day. Today I am pretty much bed-ridden and thus spending my time (between irresistable naps) surfing the net on my laptop, which is how I found this site, and playing an inane game on my DS whilst waiting for web pages to load. I’m happy. I can see the quiet street outside my window, listen to the birds, watch my cat curled up on the bed and discover a little more about ‘Life, the Universe and Everything’ at the same time. What’s not to like? :-)

        But I would also like to have been able to out for a walk with the dog, pick up some shopping, hang up the laundry, dust and vacuum, chat with the neighbours, meet a friend for lunch, collect my youngest son from college.

        Even on a good day I am no longer able to do things that are taken for granted by most women my age. I am no longer able to drive, or ride my beloved motorcycle. I cannot fly home to visit my family and am stuck in the wrong country. I cannot get a job because my disabilities make me unreliable and probably a ‘health and safety’ risk (the reason I lost my last job).

        That I choose not to be frustrated when I can’t do those things doesn’t mean that I have ‘given up’. How do I convince others of this? I know I am putting an unfair burden on my husband who has had to become the sole breadwinner and also has to take on a lot of housework on far too many days. Is it wrong for me to regret this? Is it wrong to hope that something will come along to help me be more independent? What do I do on days that the pain itself takes all my energy to cope with, leaving none for anything else?

        I usually just cope with the pain-induced broken nights, but they build up. Last night I took 50mg of tramadol so I could get a full night’s sleep. The pain-reducing effect only lasts six hours and I wake up early but at least they are six unbroken hours. It was the seventh capsule I’ve taken in nine months so I’m hardly an addict (I’m allowed to take two a day) but that is because I know what the after-effects are; eighteen hours of feeling slightly drunk and light-headed, bouts of sleepiness and my already terrible sense of balance being reduced still further, resulting in a day in bed (or not too far from it) anyway. And that is the one pain aid that gives me any relief at all with the least amount of side-effects.

        Oh, well. Thanks for allowing me to vent. I feel that I cannot vent in real life without upsetting someone. Especially doctors; they usually feel compelled to ‘do something/anything’ and get frustrated when they can’t – amazingly, I feel that you actually know where I’m coming from and understand that I’m not imposing any burden or requirements on you. Just reading that your experience and attitude are so similar to mine has helped enormously.

        Thank you again!

      2. It’s my pleasure to help in any way!
        Accepting doesn’t mean you have to enjoy your situation! There are times when I’ve got really frustrated with my limitations (darn it, I’m NOT superwoman?!), and when I’m fed up with other people trying to ‘fix’ what isn’t broken, or can’t be repaired… And I know it’s hard to stay focused on remaining calm and coping. It’s OK to let rip every now and then, that can be part of accepting that this isn’t fair, right or what we expected (although we can always ask where it’s written that life is ‘fair’, ‘right’ or ‘has’ to be what we expect!).
        I’m going to put my neck out a bit here, and hope I’m not trying to ‘fix’ anything, but I wonder whether you’ve been given any help to look at your activity patterns (over and under-activity can both be a problem at different times) – I do feel your passion for doing things you really want to do! There are some books that are really helpful: Chronic Pain, a survival guide by Turk & Winter is available via Amazon, and it’s a great workbook, well worth a read.
        As for family – now that’s a hard one. They mean well, but often fail to recognise when to say when. I don’t know of any personally, but there is a section on the Turk & Winter book that discusses communication, and might be useful. I think the best way is to be honest and direct – ‘assertive’ is the word I think of, but it has loads of baggage.
        Having hope is essential, I think – provided that you also live well in the meantime. Living well does mean ensuring your values are being lived every day though.
        Keep searching, keep reading – and share! If you’re looking for a really good online community, I couldn’t go past Chronic Pain Revolutions – wonderful community of people who want to live despite having chronic pain.

  4. Oh, thank you! More help! :-)

    I laughed at the “NOT superwoman?!” as it is a joke I and my friends sometimes make. :-D

    I do try to exercise* as much as possible as I recognise that immobility inevitably makes things worse. It is a problem though when pain-induced exhaustion aggravates the heart conditions, rendering exercise impossible; or pain meds lead to side-effects which make it unwise. For one thing, I need good muscle tone to support my hyper-mobile joints and to keep the arthritis from causing further damage.

    Actually, I found letting go of hope actually improved things when I realised that the things I was hoping for were unrealistic. I was getting frustrated at the lack of progress I was making instead of being happy that I was delaying deterioration. So these days I really am (mostly; I AM human!) happy. I just have to make others see that. Good advice about being more assertive.

    I shall try out that community, thank you!

    *By ‘exercise’, I don’t mean treadmills or gyms; just ordinary walking around and the movements involved in carrying out usual household tasks.

    Oh, and sorry for frequently falling asleep during our conversation; the tramadol side-effects haven’t worn off yet!

    1. I know that at least to some people I’m warped by either too much exposure to occupational therapy or too much psychology! I think I have a nice touch of both with a healthy dose of critical thinking and pragmatism.

  5. When I suddenly experienced intense pain and swelling, leading to the discovery that I had developed RA, I felt totally blindsided. I knew nothing about this disease and needed info that I could understand right away.

  6. Hi,

    I completely agree with you, because, for the past four years I have lived the challenge of chronic pain. I have tried to convince myself in accepting the ‘unpleasant sensation’ (this sounds better). I am happy to know that this is a recommend approach. Knowing this is a big motivation.
    I liked your examples of ‘we, willingly going through pain’ because ‘the end result is worth it’. This appealed me. Thank you for recommending the book and online resource.
    Truly, accepting pain will make it easier to neglect it, and also help minimize the suffering (difficult circumstances) resulting due to pain.

    1. You are so welcome, I’m glad this has been helpful for you and that you’re making your way through this journey knowing more about what research has shown to be helpful. ‘Acceptance’ is such a difficult challenge, but knowing that you can choose whether to act on what your mind tells you about your pain does seem to make a big difference to the amount of suffering and sadness that goes along with it. All the very best in your future, living well with pain.
      regards
      Bronnie

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