Making sense of chronic pain

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Peter, age 32, is a technician with a 10+ year history of back and knee pain. He’s not really been bothered by the pain until recently. After an episode of pain, a little over a year ago, his pain worsened (became more intense and disabling) and he was off work for three weeks. Eventually, the pain settled back to normal but ever since he has had frequent flare-ups and much to his worry he doesn’t seem to be able to self-manage his ‘muscle pain’ with stretching, light exercise in bed and heat anymore.

He is now in your clinic.  He explains to you that he’s very frustrated because the pain won’t go away (like it used to) and that he doesn’t know of any other way to treat the muscles. He’s been online to look for advice on how to deal with muscle spasms, and thinks that his episode with intense pain and sick leave is likely due to an acute herniated disc which was picked up by an MRi carried out during his sick leave.

You: So, Peter, what do you think is the cause of your back pain?

Peter: I’m not sure, really. I’m guessing it must be something that makes my muscles go more into a cramp than before. Do you think it could be caused by the disc herniation they found on the scan?

How do you answer Peter’s question??

In this post, I will share my perspective on why the explanations we use to make sense of the patient’s suffering and to justify our choices of therapy, are an integrated part of the therapy.  This means that the words we use ought to be considered a part of the therapeutic intervention, with all the merits and caveats of any other therapeutic intervention.

I’m sure most people today will agree that pain is an experience and that the understanding of the (proposed) underlying processes are complex, multifaceted and not fully understood. In other words, experiencing pain and relief from pain should be a natural part of life. However, it is a completely different beast when pain is no longer relieved and it becomes the driving experience that leads to the loss of life quality, mood changes, loss of socioeconomic status and/or functional limitations.

When pain is perceived as a natural part of life it doesn’t necessitate any explanation, it merely is. However, when pain challenges our life-as-we-know-it, it requires us to understand it in order to predict, accept and/or manage it.

Pain can be seen as an innate driver of a search for pain relief. Experience and learning become highly valuable companions, and dealing with a pain that we believe is short-lived, is generally much less problematic than a pain, which we cannot predict or see an end to. Since ancient times we have used linear explanations to predict pain and its relief. As such there has been speculations about causal relations between pain in general and evil spirits, tissue damage or brain (dys)function. Our desire to see causal relations, even when there is none, is so deeply rooted within us, that we need to remind ourselves that hurt does not equal harm or that pain does not equal nociception.

Are diagnosis and treatment like the chicken and the egg?

It has been claimed that the vast majority of all low back pain is of a non-specific nature (Kamper et al. 2019).  However, in the world of manual therapy and sports physiotherapy there’s a strong tradition for using pattern recognition as the basis for ‘diagnosing’ musculoskeletal pain (Maher CG 2019). I too have had great help in this and would likely do so again if I should find it useful. However, it is important that we remain vigilant to the fact that these so-called diagnoses are merely names, i.e. nominal diagnosis, that we have decided to use for observable phenomena: We don’t know that a disc is bulging, that movements are out-of-tune or that neurons are sensitised – it’s a matter of conceptualising what we see and an easy way to postulate a linear relationship between the treatment we provide and the symptoms of the patient. But more to the point of this blog post; it’s a way for us to communicate what we think could be helpful for the patient. The nominal diagnosis should therefore not be perceived as a specific explanation (cause) of their symptoms.

The use of these nominal diagnoses (i.e. syndromes) is an extrapolation across the unexplanatory gap between physiology or pathoanatomy and human perception. While this may feel like a help for novices to grasp the bigger picture, there are some critical steps missing in this process of clinical reasoning.  More specifically, a clear distinction between clinically observable phenomena (e.g. pain in an area without any known pathology, aka secondary hyperalgesia) and the theoretical but science-based explanation of that phenomena. The risk of being unaware (or unappreciative) of the difference between observations and diagnoses/theories is that you could end up managing the theoretical cause of the pain (‘the diagnosis’), instead of the primary problem of the patient (e.g. functional limitations). For the patient the problem is the same; if their pain is considered a symptom, then attention towards removing the theoretical cause of the symptom (e.g. muscle tension or catastrophic thoughts) becomes the focus of the clinical encounter. This approach may lead to unsuccessful treatment of the pain-related disability, social isolation etc.

Returning to Peter, the observations that he makes are that pain is less responsive to treatment than before and that he gets increasingly more frustrated with it. His theoretical explanation of the problem is that a herniated disc is a likely driver or cause of an increase in muscle tension. This perceived relationship between observations and explanations guides the narrative, which Peter tells. However, in Peter’s case focus is solely on the tissues and not on the frustrations he has. Thus, as a first step therapy could focus on helping Peter build a narrative that a) is based on the a contemporary and socially acceptable explanation to his pain and b) direct self-management. In Peter’s case it was important for him to include the frustrations that pain led to, which was done by explaining him the dissonance between his observation and his explanation.

What problems that you have, that you want my help with?

As a clinical academic, I’m intrigued by complexity and the mystery involved in diagnosing and putting together a plan that could help the person in front of me (aka my patient). My patients sometimes share this enthusiasm for critical thinking and nerdy details, but most don’t. Most patients that I see just want to get rid of their pain and/or return to their lives as they were. While this seems rational and possible in many cases of acute pain, the prospects of curing chronic pain is challenged by the evidence: While many treatments may affect pain in the short to medium term (Artus 2010), pain appears to be a stable phenomenon in some people’s life (Dunn 2013 and Landmark 2019).

In the Lancet-Series on Low Back Pain (LBP) the authors write: “Low back pain is increasingly seen as a long-lasting condition with a variable course rather than episodes of unrelated occurrences” (Hartvigsen 2018). This contrasts with the desire to find a specific trigger of LBP that we can remove, but it may lead us to a more pragmatic approach in which we help the patient recover (or live with) the episodes as they come. To me it means that I need to understand what problem(s) my patient has that they need to solve in order to move forward with her/his life. Initially, Peter felt that it was the pain itself that was causing his frustrations. Or as he said it: “They weren’t there before the pain flared up”. Later on, he started to feel that his frustrations were more related to the way he was thinking about his future; he was afraid that he would lose his job, he felt guilty about not managing his pain better in the years leading up to the recent situation and in particular he was tormented by a feeling of being insufficient as a husband or father due to all his pain related disabilities. As we discussed these aspects of his life, we were able to come up with new solutions to his frustration without changing the pain itself.

What if pain cannot go away?

Like Peter, some patients suffer from pain that is not responding to the best available treatment. Rather than going down the rabbit hole trying every intervention in the book, I am a big fan of returning to the lived experience of the patient and asking something like: “What is it that pain prevents you from doing or being?”*. I try to focus on the parts of their life that they feel are most important. I could ask something like: “If all pain had disappeared this morning; how would you have noticed it, and what would you have been doing that you couldn’t normally do?”.

How do we explain the pain?

There is an increasing focus on pain-related stigma against patients with painful syndromes, such as fibromyalgia. However, some pain syndromes are so common that we cannot comprehend the complexity that they reveal; derangement syndrome, subacromial impingement and overuse injuries are examples. To many clinicians these common syndromes still represent pathoanatomical problems that can be fixed by the right expert. For some patients, this under-appreciated misconception leads to years of searching for a rational explanation or a cure for their pain. I understand why it is attractive for patients and clinicians alike to have a cause, which they can treat. I even think that it is essential that we can name the beast we are fighting. But we should not be misled by it! By this, I refer to the base of evidence that non-specific pain does not need specific treatment schemes to improve (see Karayannis 2016 for example). In the words of Daniel Kahneman:

The mystery is how a theory that is vulnerable to obvious counterexamples can survive so long. I can explain it only by a weakness of the scholarly mind that I have often observed in myself. I call it theory-induced blindness: Once you have accepted a theory and used it as a tool in your thinking, it is extraordinarily difficult to notice its flaws. If you come upon an observation that does not seem to fit the model, you assume that there must be a perfectly good explanation that you are somehow missing. You give the theory the benefit of the doubt, trusting the community of experts who have accepted it.”

I call it theory-induced blindness: Once you have accepted a theory and used it as a tool in your thinking, it is extraordinarily difficult to notice its flaws.

Daniel Kahneman, NL

It feels so appealing to accept that Peter’s pain has a ‘physical’ cause (i.e. something in his muscles). But there is no scientific explanation to support that muscles hurt, and the fact that he has used stretching and light exercises to relieve his pain, does not make it any more likely. What his story does tell us is that:

  1. He has had low back pain for many years
  2. He has been able to manage flair-ups alone until last year
  3. Last year he had a sudden increase in his known pain, which forced him to be on sick leave. In the same period a disc herniation at a relevant level was found on MRi, indicating a likely acute inflammation as the cause of his change in pain.
  4. No history of nerve root being compromised or of phenotypic changes, however
  5. following this episode, he has not been able to control his flare-ups with the tools he had been using before (light exercises, heat and stretching)
  6. he’s frustrated and conceptualises his pain as a muscle pain
  7. he’s goal is to be able to play soccer with his son for 20 minutes without increasing the pain, and to be able to explain to his work colleagues that he’s fine but sometimes his back hurts and that during these times his pain will flare up if he lifts even lighter weights in awkward positions (which is not part of his job but it is something he’s frequently asked to help with).

Does the explanation you use fit the management plan?

Given that pain is multifactorial and that no one knows the exact cause of anyone’s pain, it is reasonable to postulate that any explanation would be equally (in)correct. However, this immensely disregards the body of knowledge about how nociception can contribute to pain (read more here and see the video below).

Even more importantly, we must stop neglecting the importance of learning and experience as elements of management. In the case with Peter, there is evidence of a herniated disc from MRi and he has experience with pain relief from exercises (stretching and light movement) and heat. Exercise may have positive effects on persistent pain, while heat and stretching have only short-term effect. However, for Peter, neither seems to work anymore.

From patient-education to a narrative explanation

In the case that I have used for this post, here are some examples of how I would navigate my patient-education towards a mutual understanding of “what is wrong” and “what can Peter do about it”.

  1. Re-ignite Peter’s positive expectations of self-management and validate pain-reducing behaviour, e.g. “You mentioned that exercising helped you before. In fact, I also think that exercising your muscles could be part of the solution. But maybe you need a bit of help to get back to where you were.”
  2. Facilitate learning, e.g. “You told me that you keep stretching and resting but that neither seems to do you any good or in fact they may even worsen things. Have you tried to stop these strategies without avoiding resting or moving altogether?”
  3. Provide a rationale, e.g. “The pain you feel is not dangerous but I understand that it frustrates you because you can’t control it. Since you were able to control your pain before it flared up, I think you should be able to control it again once you return to baseline. In my experience, and based on what you tell me, this should be possible if you learn to move without provoking your pain.”
  4. Build a narrative, e.g. “I noticed that you had a metaphor you used about your pain; it was like a toddler because it cries (hurts) no matter what you do, and you have no idea what’s wrong. So, to use this metaphor, what we think you need to do is a) make the toddler stop crying (they do eventually), and then b) see if we can figure out what you can do without making your back hurt (cry) again. How does that sound for a plan?”
  5. Create a coherent plan that includes all of the above, e.g. “To make your pain get back to the baseline level, I think you should try a systematic approach where you combine the things that help (even if they only help momentarily) such as heat and exercise, and avoid the things that may trigger your pain to flare-up.” [this would be structured with drawings, videos, descriptors etc. and include a day-to-day plan until next visit]. “Also, could I ask you to practice your narrative with your girlfriend before the next session? It’s important that you can identify yourself with this narrative explanation, so if you have any questions or doubts, just send me an email.”
  6. Address all other concerns. The narrative explanation and the first plan usually have short-term focus because I want to know how he responds to them (both in terms of understanding his pain and dealing with it). But it is important to validate all concerns that Peter has, even if they are long-term goals. In Peter’s case, this meant that we also discussed a prognosis for when and how he could return to soccer training.

I want to thank Laura Rathbone for her help and critical comments to the manuscript!

If you want to know more about pain and education you can follow me on twitter (@mh_dk) and Instagram (@mhdk_drmortenhoegh) or follow videnomsmerter on Facebook.

*) I attribute this quote to prof John Loeser (personal communication).


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