Windows into pain. Part II

It has been about a month since I wrote a post reflecting on this pain I have in my shoulder. I must say I was overwhelmed by the many offers of diagnostic and treatment advice – it left me both chuffed and a little apprehensive about revisiting it.

To start, let me say that my shoulder is less painful than it was. I have been a very good patient, I might say – in the gym every second day, keeping as fit as I can (I have in fact lost 3 kg!), taking my NSAIDS strictly on dose. However, that is all fairly understandable – one might observe that I am that kind of fellow.

Other things have been more of a challenge. For example, I have noticed that some of my movements tend to be accompanied by little groans or expirations. I screw up my face a little when I do something that hurts and – get this – when I do something I expect will hurt. This is a very intriguing and enlightening journey for me – I am almost excited at what I am learning about having persistent bothersome pain, and also what I am learning about me (although, truth be known, some of it is just a little disappointing).

On each of these occasions, when I find myself behaving in a manner I see in my patients, or having cognitive intrusions about which I read and write on a weekly basis, I am grateful for the opportunity to ask MYSELF the sort of questions we ask about people in pain: ‘What was the point of that groan?’ or ‘Why did I screw up my face then?’ or ‘But there is so much evidence AGAINST that scenario’.  Do we groan just to communicate?

Bill Fordyce, the guy who pioneered the formal use of operant conditioning for chronic pain, would jump on these behaviours and suggest that it is they that is causing a big chunk of the problem. Actually, I guess he would not do anything with them but would look to occasions of not groaning and reinforce them, but you get what I mean.

I reckon Professor Michael Nicholas (congratulations are in order – this is one Professorship that has been deserved for eons), one of the real heavyweights of cognitive-behavioural approaches to pain management and a key player in the development of INPUT at St Tommy’s in London, and  ADAPT at Royal North Shore Hospital in Sydney, would suggest it is ALL about communicating.

The question I now have, as a kind of insider, at least to some extent, is ‘Well what about when I groan when I KNOW noone is around?’ With whom am I communicating then? I don’t think it is a habit that has been established by repeated activation whilst around people. Yet. Not specifically this one at least – perhaps it is a generalised response from occasions, of which there are many, on which my grimaces have been met by a loving parent or partner and that made me feel safer.  That is reasonable I guess, but it doesn’t FEEL like that. Furthermore, the notion that it is JUST a habit does feel a little illegitimate – this is a good reminder of what patients feel when we fail to get into their skin even if we are making very sensible suggestions about their situation.

The last bit I want to reflect on is this cognitive intrusion thing. I have found it most interesting indeed and not a small nuisance. I can almost hear the conversation going on inside me. On the one hand is a person in pain, the cause of which is not clear, with an unclear prognosis but a gaggle of undifferentiatable possibilities of various impact, a person with a better than average understanding of biology and a better than average set of resources with which to engage with the problem, a job that is not under threat, excellent social and family support, a payable mortgage etc etc (the point here is to reflect on how lucky this patient is in those ways and how different that is to some of our patients).

On the other hand is a person who is a supposed international leader in clinical pain science, a person who has written papers and books on the subject, who has had his chronic pain and recovered, who has ‘form’ (this actually reminds me of a conversation with The Beautiful Anna, where we were reflecting on how helpful it is for parents to have more than one kid so that they realise that however good or bad their first kid is, it is not because of the way they were parented!)

These are the sort of conversations that go on inside me: ‘Bilateral pains huh? BOTH shoulders are stuffed – how will I get BOTH reconstructed?’….‘You didn’t injure it just before the pain came on so the damage shown on the MRI you have has been there for yonks’….‘The right shoulder is doing exactly what the left did – you are staring down the barrel of months of bad sleep – get a steroid injection – it will give you a week’s relief’…‘Bilateral pain? Obvious immune-related mechanisms at spinal or thalamic level that can explain that one – no worries just part of the gloriously sophisticated protective mechanisms’….‘Could be lupus’…‘Lupus! You are kidding! You are not fatigued, your neck and back aren’t sore, no-one in your extended family has had it’….’OK so now your back hurts and your neck is getting stiff….your aunty died young – maybe she would have got it’…etc etc etc.

I don’t want to give the impression that I really am ruminating on this stuff, but I do want to remind all of us who are in the business or vocation of treating people in pain, that these cognitive intrusions – what David Butler might call cognitive ignition nodes, are stubborn little suckers. The thing is, I KNOW that all these things can upregulate the pain and nociceptive system and I have a very large amount of data available to reduce their impact, but they remain stubborn little suckers. What I want most now is more accurate information – I don’t have the skills or knowledge to get the clarity I want. We must all remember this when someone in pain is grimacing and groaning and telling us they think their disc is squashing their spinal cord.

About Lorimer Moseley

Lorimer is NHMRC Senior Research Fellow with twenty years clinical experience working with people in pain. After spending some time as a Nuffield Medical Research Fellow at Oxford University he returned to Australia in 2009 to take up an NHMRC Senior Research Fellowship at Neuroscience Research Australia (NeuRA). In 2011, he was appointed Professor of Clinical Neurosciences & the Inaugural Chair in Physiotherapy at the University of South Australia, Adelaide. He runs the Body in Mind research groups. He is the only Clinical Scientist to have knocked over a water tank tower in Outback Australia.

Link to Lorimer’s published research hereDownloadable PDFs here.

Thanks to all of you who commented on part one of this post.  We got a ton of correspondence – too many to publish.  For those of you who write in with clinical advice or personal questions, rest assured we will pass those on but won’t publish them here.

The point of this post is to foster conversation not on Lorimer but on the things he describes.

Comments

  1. I am a neuroscientist (though not focused on pain) and a chronic pain sufferer for nearly a decade now. There is no question it sucks but it is very interesting to have those conversations as scientist and patient at the same time. It’s important to not get carried away, of course since, as you know, pain is difficult to master and the scientist mind will understandably want to do that.

    About facial expressions, I don’t know if there’s any empirical data on this but I would guess there might be something. At one point I thought I wanted to do this experiment. Do you have a decrease in pain if you block the painful facial expression? This actually worked for me anecdotally when my husband noticed I tensed up and frowned when in pain and working on the computer. I used these sticker like things called “frownies” to stop myself from frowning and it seemed to make it easier for me to keep the rest of my body less tense and led to a reduction of pain. Who knows if it is the blockage of the frown itself or the reduction in overall tension that led to pain reduction. If someone has not done this already it would be a nice experiment to do. (And you could give it a try personally with some thick surgical tape or get some frownies)

    Cheers, Ayse

  2. Mental telepathy, was wondering what was happening just yesterday! I’m sad to read all this. Yes, great for your research but it’s awful hearing that someone ‘understands’ pain or where I/pain sufferers are coming from. I only hope that you don’t get to the point of, eg. jamming your finger somewhere and not even bothering to grimace because you’ve realised it doesn’t change anything. Or being happy you have a cold because it’s almost enlightening to be thinking about another part of your body and simply have a runny nose and thick dull head (that for some reason seems to override my pelvic pain for a little).
    Can I suggest art for the mind waffle? I”ll post it to my website!
    There’s never a good reason to experience it. Hope the pain goes soon Lorimer.

  3. Eva Boesch says:

    I’d like to use this space to share my experience with pain or more how amazing the brain is.

    I have lower back pain, which doesnt bother me too much, I just have to stay fit. One day, I thought I should have it investigated and the results were shocking to me. Similar to Lorimer’s experience with imaging, within minutes of reading the report and looking at the image I went from discomfort to horrific pain and wasnt able to walk properly for 2 days. And I too couldnt believe that reading a report could do this to me because clearly this does not cause harm. I kept talking to myself, calming myself down and reminding myself of pain physiology, and effects of catastrophising – which sounds really stupid but worked and I could go back to work within 2 days. I am still amazed that even though I had the background knowledge and knew what was demonstrated in the xray had been there for more than 20 years my brain over-reacted to protect me and thought kept rushing through my head like ‘can I work with a back like that?’, ‘should I get back on my snowboard?’, ‘That one time when I fell, could that have left me paralised?’, ‘I shouldnt have done gymnastics.’. Thoughts I couldnt stop even though some were not reasonable.

    This experience helped me with my second ‘recovery’.
    A few months ago, it was a stressful time, I had a big clinical exam coming up at the end of the week I literally stabbed a knife into my hand (don’t ask me how but imagine a very blonde moment). The doctor at the ER sent me straight to the specialist with the diagnosis of severed flexor tendon of the finger. So here I was, a physio with upcoming clinical exam and possibly severed tendon, I believe you can imagine my stress levels at that time? Imaging showed I only damaged the tendon sheat and nerve and artery were intact. Phew! But here comes the interesting part. Every time I moved my finger or touched anywhere close to the wound I experienced nausea and dizziness. I became very protective of my hand, I was constantly aware of where my hand was in space and avoided any normal use of the hand, doing my exercises was hard work – after 10 days of allowing myself to behave ‘like a princess’ I decided that’s enough now. The tendon was fine, the wound had enough time to heal and the scarring was strong enough for normal activites. I thought I desensitise myself like I tell my patients. Well, what I didnt expect was what my brain did to me. So here I was, with the knife I cut myself in the hand, standing on the same spot in the kitchen like 10 days before starting to chop vegetables. My heart rate skyrocketed, I started sweating and shaking, was dizzy and nauseous. I have to say I was very fascinated by my reaction and kept going. I contemplated of placing some pillows on the ground in case I fainted again. 10 minutes later the spook was over and I have been fine every since, no dizziness, no nausea, nor hypersensitivity.
    Aren’t our brains amazing?

    But here is the thing – I had the privilege of knowledge previous to the injuries and recognised ‘inappropriate’ reactions of my nervous system and reacted on them very early before great neuroplastic changes occurred. I believe that’s an important point and when it comes to treatment we shouldn’t underestimate very early pain education.

    Lorimer, good luck on your journey and have fun manipulating your brain.

    soula Reply:

    Eva your story is so interesting to me. I’ve been wondering about placing myself back in the spot where my accident happened which is sitting on a fitball in front of my computer where I was working. I have a video of me sitting on it too (my husband was filming our dog and a friend’s dog playing and there I am too). I’ve often glanced over this video and wondered what its doing to my brain. You have me wondering more now and if I should buy another fitball, grey and all, exactly as the last (Good God, here comes fear) and just sit on the thing…. hmmmm???? What would it do? Worth trying? Make me better or worse?
    Thank you for sharing your story.

    Eva Boesch Reply:

    Hi Soula,

    Thanks for your reply. Im very curious about that grey fitball of yours. I think it’s definitely worth trying, it’s just a ball after all even though in your mind it elicits all sorts of emotions. I’d try to take it quite easy though. maybe just look at it in a deflated state and feel the material and observe your reaction. Maybe talking to yourself helps you to calm down. Then you could inflate it and just look at it for a few days until you dont feel threatened by it, then touch it, it’s just a ball. Then sit on it with chairs around you to hold on to and slowly dethreaten the situation?
    Definitely let me know how you go and what you find useful!

    All the best!

    soula Reply:

    Eva thank you for replying. I will try all this. I have to buy another ball as the original one completely split with the burst, it didn’t deflate. hopefully I can find the same one. I have touched the old one and felt the fear surge to my tail but I’m happy to experiment further. Not one for ‘princess’ handling as you say. This issue has been allocated way too much attention somehow and become a monster!
    I’ll get back to you.

  4. Two essays and a research therory come to mind as I read your update, Lorimer.

    It seems to me like you are gaining a new understanding of the lived experience of unexplained pain. The quest to make sense of the cognitive dissonance created by ambiguous pain is a common “illness narrative.” (Making sense of illness narratives”.) I recently attended a lecture of Dr. Weingarten, the topic of which was chronic sorrow, loss of self when dealing with chronic illness/pain, and a therapist’s role in this.

    But the two essays I think may of interest to this discussion of your shoulder pain are:

    Making Sense of My Thumbs: Coming to Terms With Chronic Illness by LUCY M. CANDIB, MD 2004 Families, Systems, & Health 2004, Vol. 22, No. 2, 139 –151

    And Kaethe Weingarten’s commentary on the above narrative is fascinating: Commentary: What is at the Center, What the Edges of Care? by Kaethe Weingarten, Ph.D., Family, Systems & Medicine, 2004:22:151-157.

    And finally, A.D. Bud Craig’s “A new view of pain as a homeostatic
    emotion” may also be of relevant interest here.

    “These findings indicate that pain in humans is a homeostatic emotion reflecting an adverse condition in the body that requires a behavioral response. It involves a distinct sensation, engendered in interoceptive
    and anterior insular cortex (the feeling self), and an affective motivation, engendered in the ACC (the behavioral agent).”

    http://people.usd.edu/~cliff/Courses/Advanced%20Seminars%20in%20Neuroendocrinology/Pain/Craig03.pdf

  5. Soula, yes you should go back to the video, just in your head, if that is where it is. Not necessary to do it practically. Find all the emotions you felt at that time, also sounds and visual stuff. It is important to connect to the subconscious emotions if you can and find out what it was you were resolving at that very moment. You will then experience again the emotions of the event and the learnings behind it. your nervous system and brain layer will then let go of the pain matrix. Simple !!
    let us know how you get on.

    soula Reply:

    Alison thank you so much for your reply. I keep a journal and did go back to that to read what was happening on the day of my accident. I’ll read back further and see what happens. I feel I’m up against a mountain though. It’s been 5 years, I have a peripheral stim implant and ready to have another round of nerve blocks to the nasty pudendal nerve. I’ve had 2 amazing times where I thought I was healed and tried to resume the old life again but have been unsuccessful. Anaesthetics work wonders for a short period. Distraction seems to be short lived (eg when travelling or a great get together with friends) as the pain comes back to what feels like double, like it’s catching up what was missed.
    Thank you thank you thank you so much.

    Jennifer Gait Reply:

    Soula,
    To add to Alison’s reply, as well as looking at the emotions you were having at the time, I think it is also important to look at the meaning of the event – what meaning did you put on your husband playing with the dogs, and on your accident? What was the worst part of injuring yourself? Then if you look at the times that the pain has worsened over the years, were there similar meanings you were giving to an event, another person or yourself.

    The other think I would like to suggest is that you start to be mindful about your thoughts and emotions when the pain worsens or starts up. Notice what is happening inside, in the moment, without judging anything (yourself, the thoughts, emotions, the pain or anyone else) and without getting entangled with your thoughts or emotions. Labeling them (eg judging, planning, catastrophising) often helps in not getting caught up, plus helps you recognize the type of thoughts/emotions you have most often, and lowers the response of the limbic system. . Over time you may notice patterns that seem to be connected to the pain, then if you want you can change them. If you have problems with self-love and compassion, you may also want to add loving-kindness meditation, where you send loving kindness yo yourself and to all beings, to your mindfulness practice..

    Good luck – I know myself how disabling chronic pain can be, and that the use of mindfulness can offer relief. I had pain for many years, and now very rarely have any, and when I do I go inside and see what is going on.

    Soula Reply:

    Hi Jennifer,
    I’m overseas at the moment. Perhaps you can email me your email address at (soula@pudendalnerve.com.au) for the in between details and we can report significant future news back here??

  6. I believe that the greatest obstacle in dealing with pain in general lies in the outlook of what it actually is. There is your scientific explanation of pain and there is what it actually is in its most simplistic form. Both are correct but sometimes science over shadows and over complicates the issue and the end results turns out to be misconception and a vicious cycle of endless suffering.

    I just so happen to be a disabled veteran dealing with neuropathy. I have had idopathic autononomic and small fiber neuropathy along with anyhydrosis and hypohydrosis since 2006 after my last deployment to Iraq right before I left the Army. However, for the last three years I have successfully been improving my quality of life without narcotics. The little I have shared above are conclusions that I have arrived at.

    I will share something that most will consider me crazy for saying but it is an absolute fact, that the reason why pain is such a prevalent problem especially chronic pain is because many believe that pain is the problem.
    You can become adept in your understanding of the nervous system and be able to quote every receptor and neurotransmitter backward and forward but as long the emphasis is on pain as the root of the evil the cycle of suffering and addiction to narcotics will never end. My sincerest goal is to provoke genuine thought that is bold enough to step back and take a more scrutinous look out side of what has been taught. I know I have left much to be desired with this comment but for those that desire to delve deeper into this, your more than welcome to direct your questions to my email julian@seizeithealthmatters.com. Thank you very much for your time.

  7. I like the phrases: ‘cognitive ignition nodes’ and ‘cognitive intrusions’. As for why we can grimace when no-one is looking, I have several thoughts:
    1. It’s learned and hence it happens ‘automatically’ as an output from our defensive neuromatrix
    2. A reminder to ourselves that there is a perceived problem
    3. We don’t need others around to defend ourselves
    4. Depending upon where we are in our minds, ‘lost in the clouds’, how often do we find ourselves singing or speaking and then realise that we are actually sitting in a quiet train carriage?
    RS

  8. Solly Goldwater says:

    “What I want most now is more accurate information – I don’t have the skills or knowledge to get the clarity I want. We must all remember this when someone in pain is grimacing and groaning and telling us they think their disc is squashing their spinal cord.”

    This is the thing I find the most interesting. There is is no accurate information available – we just don’t have it and our knowledge/modern technology/medicine just isn’t there yet to give it (yet?) to give us the whole picture with our experiences of pain.. We tell our clients over and over to not focus on the cause of the pain but to focus on the management of the pain itself, regard pain as an entity in its own right and pull out the toolbox of tricks. Acceptance of “not knowing ” and in a way letting go of the quest for accurate information within the chronic pain context, can be very liberating.

  9. Kerstin Luedtke says:

    Hi Lorimer,
    just to be a little provocative (as usual): maybe knowing too much about pain isn’t helpful at all, if it isn’t accompanied by a clever guy in a physio uniform reassuring you that everything will be absolutely fine, that these tendon things that happen to people our age are a normal part of life and just take time and a bit of exercising….and maybe adding a little information on self-limiting conditions….?????
    And blogging about pain, isn’t that something that hypervigilance does to you?
    You know, I am wishing you only the best, it is intriguing though, to hear you of all people sounding like the typical patient…
    Hey, seriously, get well soon,
    all the best,
    Kerstin

  10. Bradley Davalos says:

    Major thankies for the post.Really looking forward to read more.

  11. Dear Eva Boesch & alison lingwood,
    I have an update!
    My husband bought the ball and in its wrapped state didn’t speak to me much. He put it in the car saying he was having trouble finding a service station that could pump it up. Yesterday he came home from an outing and said, ‘look at this’ so I looked from the mezzaine down to our kitchen and went straight to the bench searching for a bag or item he may have purchased. The ball was right next to the bench but it took me a second to notice it. It just looked so ‘normal’ like it used to… We laughed that it took me the second to notice it. I forgot about it but when I went downstairs later it was there… and in my mind, so it should have been. I felt my husband had found an old furniture item and brought it ‘home’ again. My first instinct was to hop on and get back to that life. Strangely like it was yesterday but yet over 5 years have passed.

    I woke very happy that my ball was back today.

    I should also note I had some great treatment 10 days ago and I have had low pain levels and I managed to catch up with some friends… Life has been feeling like it used to be these days. And with a holiday planned on Thursday, even more so as this is what we did every year.

    I’m in a nice little position here. Brain, you couldn’t ask for anymore… DO YOUR JOB AND GET ME BACK TO WHERE I WAS… please.

    Have a great weekend everyone.

    Eva Boesch Reply:

    Hi Soula,

    sorry it took me so long to reply. Thank you so much for sharing your experience. That is great! How are you going? Have you been sitting on the ball yet? Maybe you could include the ball in your exercise program?

    Let me know how you go and take care!

    Eva

    Soula Reply:

    Hi Eva,
    I’m overseas at the moment. Perhaps you can email me your email address at (soula@pudendalnerve.com.au) for the in between details and we can report significant future news back here??