lost

How well do people understand their neuropathic pain?


ResearchBlogging.org
When coming to terms with a chronic pain problem, one of the important steps involves obtaining a diagnosis that fits with both the individual’s personal experience of their pain, and also their knowledge (drawn from what is available in the general population). If the label doesn’t square with their experience, people continue searching until they find something that does.

There has been an enormous wave of excitement about giving people good “pain education”. I’ve always been a bit anxious about the term “education”, because it can so often mean giving an information dump, leaving the person being “educated” with little or no relevant knowledge about their personal concerns – and it’s the individual and unique concerns that influence how a person interprets what is happening, and how they respond. As a result, I prefer “helping people to develop a personal pain formulation” or “reconceptualising” their pain. Putting the pedantics aside, it seems really important for health professionals to not only understand what people with pain already know about their health condition, but also to understand how people interpret what they’re told – if they’re told anything.

In this study, 75 people with neuropathic pain were asked to sort a series of statements about neuropathic pain according to their level of agreement with them. This is known as Q-methodology. The sorted statements are then analysed to identify common features amongst them. Four factors were identified:

  1. Neuropathic pain is a nervous system problem, psychology influences the pain experience and acceptance, and being open to psychological interventions – this group of respondents had tried psychological treatments, their pain was on average about 6 – 7 years.
  2. Neuropathic pain is nerve damage, psychology is irrelevant in pain experience, neutral about psychological treatments – this group of people had not tried psychological treatments, but had tried surgery and medications.
  3. Neuropathic pain is irreparable nerve damage, symptom management is needed, psychological factors play a part in pain perception but psychological treatment is not OK – this group of individuals had pain for an average of 10 years, and they had used breathing, positive thoughts, medications and physical treatments.
  4. Neuropathic pain cause should be identified, psychological influences may play a part, and treatment can include both medical and psychological – this group had pain for an average of 1 -2  years, and they had tried a range of medications, physical methods, yoga, meditation and complementary therapies.

The authors point out several limitations of this study – people were not recruited on the basis of an particular characteristics, there could be a number of recruitment biases, and they were all identified via online recruitment processes, therefore it’s hard to generalise. What it does indicate is that there is no coherent biopsychosocial explanation put forward by participants, they appeared to have received very little explanation about their problem, and this affected their readiness for psychological or self management interventions.

Another interesting point is how many of these participants, across all the four factor groups, described experiencing being given psychosomatic explanations of their pain. The authors write :”Across all accounts, participants’ comments indicated that they had received psychosomatic explanations of their pain and had been distressed and offended, consistent with other studies which use open-ended methods to sample patients’ experiences. (p. 353).” The influence of psychological factors was found to be associated more with adjusting to chronic pain, rather than to developing an integrated model of pain. Factor 1 were the only group to endorse the notion of acceptance, or learning to live with pain – and the groups in Factors 3 and 4 were strongly against the idea that pain could be lived with.

I find this study interesting, not so much in what it has discovered, but rather more in terms of the discussion about psychological factors and medical factors – but nothing on social factors. I find myself wondering again whether we have a biopsychological model of pain, rather than a more complex biopsychosocial model.

That being said, I agree with a point made in the conclusion: people with chronic pain value a coherent explanation for their pain, it helps resolve their worry and enables them to approach their pain differently.  The problem facing people with chronic pain is how to access evidence-based and accessible information about neuropathic (or indeed any type of) pain. Often people find out about neuropathic via biomedical models, and they rarely get exposed to the complexity of a biopsychological model, let alone a biopsychosocial one.

We desperately need to understand the best ways to personalise an explanation for an individual with chronic pain. I think a case formulation approach is the most useful, but I’ve found that many clinicians think this takes “too long” and is “too complex”. I wonder about this. A formulation might take a couple of sessions, but it’s a lot less expensive and has lower risk than surgery.

In light of the very limited range of interventions for people with neuropathic pain, perhaps taking the time to respond to the person’s unique questions about their pain would be time and money well spent.

 

People who have chronic pain are often very reluctant to consider the influence of psychological factors on their pain, reflecting their fear that by accepting this, their pain is being dismissed as “not real”, or not legitimate. This means people may not accept (or indeed be referred for) psychological interventions. Treatment approaches based on a cognitive behavioural approach have good evidence to support them, but they don’t do much good if people are not ready for them, or even referred for them.

 

Martin, S., Daniel, C., & Williams, A. (2014). How do people understand their neuropathic pain? A Q-study PAIN®, 155 (2), 349-355 DOI: 10.1016/j.pain.2013.10.021

15 comments

  1. It would be of interest to conduct the survey amongst health professionals and we may find that a similar situation exists. If health professionals don’t have a rational and coherent explanation for neuropathic pain, it is little wonder that this is also lacking in their patients.

  2. I totally agree John! And yes, I hope to conduct a Q-methodology survey of clinicians. I think there are many reasons for individuals with neuropathic pain to feel confused and discouraged by what they hear. Getting clear unambiguous information about chronic pain out into the community is such an important step – but it must be more than a description of the biological underpinnings, it has to incorporate psychological and social aspects as well. I feel a little concerned that despite having had very clear evidence that psychosocial factors influence outcomes from surgery, many acute pain problems, osteoarthritis, inflammatory conditions and so on, most people with chronic pain get a biomedical explanation for their pain.
    It’s so important to wave the flag that pain is a multidimensional experience!

    1. Bronnie, we have just conducted three highly successful 4-hour workshops (“Reaching out to women in pain”) in outer metropolitan Perth. Three health professionals provide a short version of the STEPS programme, that was developed by the Pain Medicine Unit, Fremantle Hospital. I will send you the evaluations by email. They are most encouraging and point the way forward for us in terms of patient education.

  3. i had a stroke 2 years ago i am in constant pain low energy and strength my doctor calls it neuological pain and or depression

    1. Although there are some commonalities between neuropathic pain and depression, they are not the same and shouldn’t be treated the same way. Sometimes depression can occur as a result of having chronic pain, and all that chronic pain can do to self esteem, energy, sleep and self-identity. Sometimes depression can exacerbate or make chronic pain worse. Whatever the reason, treating depression is always a priority – a combination of medication and cognitive behavioural therapy has been shown to have good effect. Chronic pain requires some different approaches – exercise, learning about your pain, and deciding on your personal goals and working towards them seem to be effective strategies. I hope you get good support from your GP.

  4. There is another way of looking at this situation. We tend to pigeon hole “pain” and “depression” as if they were discrete “things”. But both experiences may be linked biologically and form important components of activated and dysregulated stress response systems. This mode of thinking does have important implications for treatment. Combining the approaches outlined above would seem to make some sense (at least to me).

    1. Yes I do agree, there are common neurobiological processes. I guess where I’d begin is with depression if the mood problem is making engaging in therapy really difficult. And yes, pharmacology is one of the approaches I would begin with – mainly because it also has an effect on pain, but also because if a person is fatigued and can’t think straight, it’s so much more difficult to engage in the “work” of chronic pain management. Depression that is more about feeling demoralised and beaten by pain, perhaps frustrated or fed up, I think might respond more to similar processes as used in chronic pain management. I still begin with sleep thought! It’s so biologically important, and can be managed effectively without medication, provided people are willing to use strategies that demand a bit more up-front.

      1. What are those strategies? I have an illness that causes quite a bit of nocturia, and I haven’t slept through the night more than once or twice in 5 years or more…

      2. I’ll write about this on my Healthskills4pain blog next week. Sleep is such an important thing for everyone, and no-one more so than a person who has to dig deep to get through each day. With regards to removing your bladder, my main concern would be whether this would remove your pain or instead generate a “phantom bladder pain” – which has been known to happen. Pretty much if you have a sensitive nervous system and undertake any further trauma (even surgical trauma) the risks are high for ongoing post-operative pain. If there are other reasons for needing to have surgery, then it may be worthwhile, but for managing pain from IC, I would be cautious. It’s a bit like people who want a limb amputated because of complex regional pain syndrome: many times they end up with a phantom limb pain that is far worse than the CRPS was.
        My preference, because I’m not a medical doctor, is for nonpharmacological, nonsurgical and noninjection options. Everyone’s pain is different so you need to work out what is best for you, but I like being gentle with my nervous system, learning how to calm it down myself, and to have skills rather than pills because no-one can take them away. It’s not to say I don’t take medications, because I do for mood, but nothing has been useful for pain – and that’s fairly common for people with chronic pain.
        Anyway, have a look at Healthskills4pain next week and I’ll talk about sleep.

  5. Great post Bronnie…

    It has encouraged me to reflect on my experience of the times when giving someone ‘biology of pain education’ really helped…. and the times when it didn’t. When it worked, it worked spectacularly well. But when it failed it did so spectacularly too!

    I had assumed it was because I hadn’t delivered the content in quite the right way: as in – I thought it was within my control – if I could find a ‘better’ way to deliver the message it would then ‘work’…

    But now I’m thinking maybe it was more because the explanation I was offering didn’t fit well enough with that persons personal experience and their knowledge… no matter how I dressed it up, it wasn’t what they wanted or needed and so they went somewhere else to keep looking!
    I was too focussed on giving them the knowledge they “needed” that it didn’t occur to me to check what their starting position was… I assumed it was irrelevant as I knew where they needed move to… but I suspect there was just far too much of a distance between what I was ‘selling’ and what they were ‘buying’.

    So now I’m wondering how do you personalise an explanation of pain – especially in a group situation, where you are likely to have numerous ‘starting positions’?

    Have you ever heard of the Q Methodology (or at least the first ‘Q sort’ part of it) being used in a group situation? I wonder I’d it might be a lovely way to encourage people to reflect on their own position, become aware of the differences in the way others see the same diagnosis and foster discussion?

    1. Great idea – I’d never thought of using a Q-sort as part of group process. (Are you sure you’re not a secret occupational therapist?!).
      I agree, I think sometimes we begin where we are rather than beginning where the person is at. I remember a quote I learned early in my occupational therapy training – by Anne Cronin Mosey, it says “begin where the beginner is at, move at the beginner’s pace” (actually I think it was “learner” but no matter), it applies in pain reconceptualisation too. Listen first, then ask questions rather than telling. That way the person discovers for him or herself, rather than defending his or her position. Takes time, though, so maybe it’s not for everyone?

  6. When my pain first became seriously disabling, it scared me to death – I didn’t even know the “why.” Then when I was diagnosed, every increase in pain scared me, because I wasn’t sure if it was temporary or permanent, and didn’t have a supportive professional network (I am pretty fortunate on the personal front – I am my own worst enemy when it comes to that – the whole not looking sick thing makes me struggle with guilt and my own expectations).

    I can say, five years into end-stage interstitial cystitis (I believe my life could be drastically improved at this point by bladder removal; DH argues otherwise, and finds the whole ostomy idea disgusting – mostly just because I could drink enough to not be thirsty again) that I no longer “freak out” about the pain – I know it waxes and wanes, know many of the triggers, and have several things I can do to help cope with it until it is better.

    Anxiety is a big issue with pain. When I encourage and talk to newly diagnosed patients, I not only list various treatments available, but I do my best to explain that the illness is not one of constantly sick, that even remissions are possible, etc. A lot of encouragement and hand-holding at the beginning can do a lot to empower patients, at least ones with my illness.

    Still trying to figure out how to encourage someone with spinocerebellar ataxia. There is humor, of course, but facing getting progressively more dependent on others is a whole other can of worms…

    1. It sounds like you’ve developed some really helpful ways of coping with pain, and taking control of what you can while accepting that there are things you cannot change. I’ve been reading about “suffering”. I think suffering with pain (or illness) means feeling you’ve lost who you are, parts of your identity. I think it’s that feeling of not knowing who you are, being unable to rely on what you know about yourself that brings about the suffering experience. And if your pain or disability is unpredictable, or involves losing function over time in a way that means losses are encountered more than once and more than we usually do as we age. So one way of regaining your sense of self identity is about finding ways to express who you are, maintaining connections with the important aspects of your past identity while letting go of things that matter less or can’t be retained. Keeping focus on why something is important allows you to find different ways of expressing that aspect of identity, and helps reduce the sense that you’re helpless, out of control, or don’t matter. More on this soon in Healthskills4pain blog too. Thanks for keeping in touch, it’s so nice to know people are reading what I’ve written!

      1. I am so thankful for the time that people take to help those of us that are suffering from chronic pain. My personal experience of it, has lasted on and off for 19 years and after 5 ankle reconstructions. The nerve pain is controlled mostly with Lyrica however it has meant the loss of my job, income and to major depression and it’s associated issues that come with that. My ortho is looking into the nerve being denerviated but this can cause more issues and also the pain clinic that I am with, is suggesting a spinal stimulator, however as it is Workers Compensation and the cost is huge that are not in agreement with any of that. Most people have no idea what it is like. I like most people who suffer from this pain would know that it is ongoing. Just last night I had no sleep and was up cooking at 4.00am. I then took another Lyrica and was zonked out till about 10.30am this am. There is precious little that I can do, except take the tablets and lie down.

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