My Doctor Told Me My Pain Was All in My Head. It Ended Up Saving Me. 2021 Medical examiner article

[Woolie]

My Doctor Told Me My Pain Was All in My Head. It Ended Up Saving Me.

https://slate.com/technology/2021/0...ing-joy.html?utm_source=pocket-newtab-intl-en

Content warning: When the article says neuroscience, they really mean "neuroscience" .

Some excerpts:

...he sat down across from me, looked me in the eye, and smiled as he told me that I was in excellent health. My pain was happening in my head. ...

Contrary to how most people think of it, pain is more than just a message sent from point A (our body) to point B (our brain), said Luana Colloca, a pain neuroscientist at the University of Maryland School of Nursing. Instead, it’s more accurate to characterize pain as our brain’s interpretation of that message—an interpretation influenced by our emotions, thoughts, and beliefs. Pain might be a warning worth heeding; it might be a wild distortion of reality. This is the central message of pain neuroscience education, or PNE, which is what the clinician at NYU prescribed for me. PNE does not involve drugs or physical exercise. It was an unlearning of everything I knew about pain, in exchange for a new truth: My chronic pain wasn’t an indicator of physical damage in my body.

This is an "interesting" bit:

In one study, published in 2017 in the European Journal of Pain, scientists followed 104 young men for three months after receiving back surgery. The strongest predictor of persistent pain—a common complication of the surgery—was the participants’ anxiety about their pain and tendency to pay attention it.

This bit... hmmm:

Most people only experience small, temporary improvements in pain after PNE, if they experience any change at all. An analysis of five clinical trials found that participants’ pain didn’t decrease on average—but up to 45 percent of them experienced more than a 10 percent change in their pain. ...Pain researchers don’t totally understand why responses to PNE vary, why the smoke alarms in some brains seem to be simply broken, even in the face of repair efforts. I asked Akiko Okifuji, a pain researcher at the University of Utah Health, why some patients recover totally and others don’t. She laughed. “That’s the golden question.”

 

[James Morris-Lent]

>>"the strongest predictor of persistent pain"

Seems like typical abuse of a statistical term-of-art: implying causation due to temporal cause-effect connotation of the lay word 'predict', when only correlation is presented (and a degenerate reverse-causality is much more plausible- i.e. people with pain think about pain, duh).

 

[Hutan]

Pain might be a warning worth heeding; it might be a wild distortion of reality. This is the central message of pain neuroscience education, or PNE, which is what the clinician at NYU prescribed for me. PNE does not involve drugs or physical exercise. It was an unlearning of everything I knew about pain, in exchange for a new truth: My chronic pain wasn’t an indicator of physical damage in my body.

In the clinical world, it’s taken much longer to gain ground, said Daniel Clauw, director of the Chronic Pain and Fatigue Research Center at the University of Michigan Medical School. Recently, he’s been noticing more general physicians and physical therapists talk about the need for PNE. “It’s crept into the clinical fields,” Clauw said. “It’s not a tsunami. It’s more of a slow ooze.”

Yup

 

[Hutan]

Most people only experience small, temporary improvements in pain after PNE, if they experience any change at all. An analysis of five clinical trials found that participants’ pain didn’t decrease on average—but up to 45 percent of them experienced more than a 10 percent change in their pain. However, there are case studies that document patients who experience near total recovery after PNE.

Wow, that's quite a paragraph. If you read it quickly, the overall impression is of quite a lot of people experiencing significant improvement.

But, it tells us most people either experience no change or only a small temporary improvement in pain, and 5 trials found that people's pain didn't decrease on average.

"up to 45% of them experienced more than a 10% change in their pain"
"up to" is the kind of language used in marketing, as in "discounts of up to 45%", but you find that it's just the brown paisley pillowcases with the orange trim that have 45% off, and most everything else is the usual price.
"more than a 10% change" doesn't say whether the pain increased or decreased
So, presumably, in one study of an unspecified size, 45% of the participants reported that their pain either got worse or got better by 10% or more - we don't know if in fact 45% of them found that their pain became significantly worse.

But never mind that most people were found to not get any lasting benefit and some, indeed possibly quite a few people, got worse. There are case-studies! Case studies that document patients who experience near total recovery. Cherry picked case studies who might have got better with time alone.

I don't understand how someone could think these results warrant trumpeting about in an article, or constitute evidence for the underlying vague hypothesis.

 

[Jonathan Edwards]

An analysis of five clinical trials found that participants’ pain didn’t decrease on average

Well that's a bit of a worry, surely? So it doesn't actually work. Or if it does it makes as many people worse as better.

Yes, pain is all in the head, but we all knew that. (And I have just published a paper suggesting exactly where.) I have always known that my sciatica is not only not in my leg but in my brain use by a trapped nerve in my bak. So there is nothing that doctors need to learn new.

The main reason why people have pain after back surgery is that the surgery did not work - as in my case.

 

[James Morris-Lent]

Wow, that's quite a paragraph. If you read it quickly, the overall impression is of quite a lot of people experiencing significant improvement.

But, it tells us most people either experience no change or only a small temporary improvement in pain, and 5 trials found that people's pain didn't decrease on average.

"up to 45% of them experienced more than a 10% change in their pain"
"up to" is the kind of language used in marketing, as in "discounts of up to 45%", but you find that it's just the brown paisley pillowcases with the orange trim that have 45% off, and most everything else is the usual price.
"more than a 10% change" doesn't say whether the pain increased or decreased
So, presumably, in one study of an unspecified size, 45% of the participants reported that their pain either got worse or got better by 10% - we don't know if in fact 45% of them found that their pain became significantly worse.

But never mind that most people were found to not get any lasting benefit and some, indeed possibly quite a few people, got worse. There are case-studies! Case studies that document patients who experience near total recovery. Cherry picked case studies who might have got better with time alone.

I don't understand how someone could think these results warrant trumpeting about in an article, or constitute evidence for the underlying vague hypothesis.

It's exactly like with PACE, isn't it.

Even the most optimistic possible interpretation of PACE and the like is that "cbt/get helps some people a little bit for a short while". But that gets papered over with claims that 'expert' practitioners are so sure that they commonly see big, lasting improvements in their 'clinical experience'. So basically an entire scientific field and therapeutic industry continues based on anecdote that has been accidentally strongly refuted by it's own shoddy trials.

Looks like it's the same here with these 'case studies' serving as a sort of founding body of myth underlying what is essentially a faith-based approach that has been, once again, accidentally refuted by it's own self-interested trials.

 

[arewenearlythereyet]

"up to 45% of them experienced more than a 10% change in their pain"

I’m not sure I want to waste my limited cognitive energy reading this so I will make a small comment about this.

even marketeers know that anything under 15% difference when it comes to subjective responses is not significant or even worth looking at, particularly as the various biases can be up to 30%.

also I’m no expert on pain responses but isn’t there an effect of dialling down over time for some types of pain? I’m thinking of the pain receptors in your mouth that detect chilli heat as an example ...the more chilli experiences you get the more your brain realises that it’s not harmful. Eventually your brain dials down ‘inappropriate’ pain responses the more it experiences/through other feedback. Perhaps they haven’t considered that the brain is quite good at doing this all by itself without the need for emotions or conscious intervention?

my assumption has always been that if the pain is real it is real but it sometimes takes the brain a few experiences to grade it via feedback. I don’t think this is a conscious thing though apart from using distraction to dilute the feeling I can’t see how it’s useful to infer that you can somehow turn off pain by wiling it to go away ...sound like faith healing to me?

 

[Woolie]

Yeah, the idea that not being anxious about your pain makes it manageable... it just doesn't fit with the outcomes of cingulotomy surgery to treat pain. The surgery makes people so unanxious about everything they're virtually a couch potato, but its effect on pain is only very modest (only a proportion of people report reduction in their pain, and that's using self-report in a nonblinded setting).

Eventually your brain dials down ‘inappropriate’ pain responses the more it experiences/through other feedback. Perhaps they haven’t considered that the brain is quite good at doing this all by itself without the need for emotions or conscious intervention?

And yes, I suspect chronic pain is a very much diluted version of the original acute pain experienced. People are so busy telling patients that they could be "doing pain" better, they fail to notice how remarkably those patients have already learned to cope with what would be crippling pain for a newbie.

All by themselves.

 

[NelliePledge]

I just don’t get this whole mentality. Don’t most people put up with pain too much rather than the opposite?

 

[Joan Crawford]

Wow, that's quite a paragraph. If you read it quickly, the overall impression is of quite a lot of people experiencing significant improvement.

But, it tells us most people either experience no change or only a small temporary improvement in pain, and 5 trials found that people's pain didn't decrease on average.

"up to 45% of them experienced more than a 10% change in their pain"
"up to" is the kind of language used in marketing, as in "discounts of up to 45%", but you find that it's just the brown paisley pillowcases with the orange trim that have 45% off, and most everything else is the usual price.
"more than a 10% change" doesn't say whether the pain increased or decreased
So, presumably, in one study of an unspecified size, 45% of the participants reported that their pain either got worse or got better by 10% or more - we don't know if in fact 45% of them found that their pain became significantly worse.

But never mind that most people were found to not get any lasting benefit and some, indeed possibly quite a few people, got worse. There are case-studies! Case studies that document patients who experience near total recovery. Cherry picked case studies who might have got better with time alone.

I don't understand how someone could think these results warrant trumpeting about in an article, or constitute evidence for the underlying vague hypothesis.

It is quite a paragraph. Misses the point really. PNE is about education - that's it - no expectation it'll make a difference to chronic pain levels. Why would it? It's sharing knowledge with the patient that hasn't been discussed with them previously by GP or in acute/rehab physio sessions.

The title of the article is weird - what did it save him/her from? Not his/her pain. Might understand a wee bit more about it - but that's about it. Plenty patients find this really useful/helpful. But that's it limit.

Mashes up feeling better about living well despite being in pain (wot this might be one small part of) with being better again (wot the patient wants - and for most patients with chronic pain we don't have the answers for that). Looks like cherry picking of some of the most unusual chronic pain patients that they recall this one aspect as being helpful. Most odd to write an article about it like this.

 

[Joan Crawford]

I just don’t get this whole mentality. Don’t most people put up with pain too much rather than the opposite?

Totally - most patients I see have been managing their pain for years and frequently decades before they ever come anywhere near chronic pain clinic / services. Usually it's because of some other additive factor - new injury, surgery, developing other chronic health conditions, worsening of pain and coping strategies no longer working, worsening mental heath and so forth.

 

[NelliePledge]

Totally - most patients I see have been managing their pain for years and frequently decades before they ever come anywhere near chronic pain clinic / services. Usually it's because of some other additive factor - new injury, surgery, developing other chronic health conditions, worsening of pain and coping strategies no longer working, worsening mental heath and so forth.

Just to say I appreciate your input on professional experience Joan

 

[rvallee]

I have no memory of anyone expressing that a major worry related to chronic pain is that it is a worrying signal of physical injury. Maybe it was expressed in some vague way but it would add up to much less than 1%. Nobody cares about this stuff, people suffering chronic pain only want the pain to go away. I have never seen anyone express it in terms of a signal or anything like it. This is a completely artificial thing, a reframing of the problem into meaningless terms.

If this were any true ordinary headaches would not exist. They don't cause any physical injury and no one ever thinks it may be that unless the headaches are consistent and especially severe. Still hurt.

Honestly I prefer the early snake oil peddlers. At least their stuff was filled with cocaine, heroin and other potent stuff that actually did something. It's quite ironic, isn't it? That this 3rd generation snake oil is actually worse in every single way than the archetypal snake oil peddlers, by every possible measure. Of course a regular mix of stuff like cocaine and heroin is certainly not ideal for health reasons but at least it actually made a difference on the only outcome that is relevant, here: the actual pain. None of that "10%" BS either, that's completely within the margin of error when relying on imprecise ratings.

As usual I would really like for these people to experience this kind of pain, say from those plants or ants that give pain so excruciating some people commit suicide. No physical injury. I doubt anyone unfortunate enough to experience it is especially worried about what hidden damage is happening, very distant on a list of worries occupied by a single item: PAIN. Only the pain. No truth or lie, just pain.

This thing where medicine decided that symptoms are actually irrelevant is probably the weirdest belief system currently in existence. The steps that had to lead this way tell of a system so broken it cannot possibly fix itself.

 

[shak8]

As someone with moderate-severe fibro primarily, I try to find some reason to treat seriously these ideas of self-improvement via just "not paying attention to the pain." This is a huge industry (eg Standford's Bell Darnall) of psychology experts (same ideas) to tell you your pain isn't that bad, that you can ignore it. Relaxation tapes. Like someone with pain hasn't already tried that? It's for people with pain-lite, wish I were one.
.
One researcher, Sean Mackey, has done some imaging brain studies of various areas and he has said, if you can simply fall in love you won't pay attention to your pain--so, let me see here....

All I can say, is that perhaps moderate to severe chronic pain is so intrusive that it demands attention (no matter how it got set up by neurons in C-delta fibers).

If the pain isn't too severe or persistent (drugs are needed) then it's interesting to observe that the pain can change or one isn't experiencing it a few minutes later (but will go on to experience more of a different body source a few more minutes later).

 

[Woolie]

One researcher, Sean Mackey, has done some imaging brain studies of various areas and he has said, if you can simply fall in love you won't pay attention to your pain--so, let me see here....

There is so much crank neuroscience in this area.

I've recently been reviewing neuroimaging research on pain and bodily sensation, and it makes you realise just how primitive our understanding is of the pain experience. Its not at all how things are portrayed in this "pain neuroscience" junk. Which is really just folk psychology with a few brainy words thrown in to make it sound science-y.

There's some cool research now suggesting that the subjective experience of pain has two main components. The first is a perceptual component. The anterior insula is heavily implicated in assessing and integrating interoceptive signals of all kinds that might indicate bad stuff is going down (including the central nervous system and also other types of signals, such as autonomic nervous system changes and perhaps also hormonal or cytokine variations). Its pretty high level, and is capable of integrating a whole host of different kinds of input, and evaluating it in the light of top-down information (information about the context or your previous experience or expectations) - to generate a "percept" of the pain if you like.

The second component is a motivational or response preparation component, generated primarily by the anterior cingulate, that signals a need to muster resources to deal with the situation in some way. For example, it might signal the need to modulate autonomic nervous system activity to prepare the body for some sort of defensive action. People have been suggesting that a lot of the unpleasantness of the pain experience comes from this second component - this general feeling that "something is wrong and something must be done about it".

But then these two things are misinterpreted. Just because your experience of pain is shaped by top-down factors (like past experience, and overall context and expectations), this does NOT mean you can control it, or even learn to over time. You see a dog, and that percept is shaped in a similar way, but its not in your control to make the dog disappear or appear to be something else, not even with extended training. If you try really hard for a minute or two, by squinting your eyes, you can almost imagine the dog to be something else, but that takes effort, and is not sustainable. Its back to being a dog pretty quick.

Just because we draw on context and expectation when we perceive things does not mean we get to just make stuff up.

Similarly, just because a lot of the negative experience of pain comes from the feeling of needing to "muster resources" to deal with the situation does not necessarily mean you can teach yourself not to do that. Sustaining severe damage to that part of the brain might help you a bit, but then you'd become a generally passive apathetic blob. So you'd be throwing out the baby with the bathwater.

To me, it seems obvious: the best way to treat pain is to address the source.

 

[Snow Leopard]

Totally - most patients I see have been managing their pain for years and frequently decades before they ever come anywhere near chronic pain clinic / services. Usually it's because of some other additive factor - new injury, surgery, developing other chronic health conditions, worsening of pain and coping strategies no longer working, worsening mental heath and so forth.

Yes, most people don't turn up in a pain clinic until they have severe unmanageable pain, usually at their wits end after trying everything obvious.

"Pain neuroscience education" is unlikely to be effective beyond inducing the usual uncontrolled response biases on questionnaires that fool practitioners into thinking they're doing something useful.

 

[Joan Crawford]

But then these two things are misinterpreted. Just because your experience of pain is shaped by top-down factors (like past experience, and overall context and expectations), this does NOT mean you can control it, or even learn to over time.

The misinterpretation is so obvious and also so insidious/devious at the same time. What's not being said makes this a while lot worse - leaves things all up in the air - for the patient to try and figure out what chimes with their experience, what, if anything, makes sense and wot's woo hoo. All patients want is not to be in pain. If it was as simple as modulating top down / bottom up experiencing and perception along with undoing some conditioning and so forth than this would be pretty straightforward to achieve and demonstrate objectively. No one has. Not even close.

Better if there is honesty about what's known about chronic pain (limited); what can be currently done (not a lot) and say so.

Seems to be a plethora of "recovery is possible" (via personal initiative/agency) memes/narratives around at the moment. So non-specific that it's impossible to tell what, if anything, the person has recovered from and why? And what relevance, if any, there is to anyone else at all.

Using the 'recovered' patients (I see pretty wide, stretchy definitions being used...) narratives are being used unsubtly to 'encourage' such in others - even through there is no objective evidence of this and no idea if anyone has same cause, symptoms, conditions etc. Pretty mucky and yuck.

 

[unicorn7]

I have no memory of anyone expressing that a major worry related to chronic pain is that it is a worrying signal of physical injury. Maybe it was expressed in some vague way but it would add up to much less than 1%. Nobody cares about this stuff, people suffering chronic pain only want the pain to go away. I have never seen anyone express it in terms of a signal or anything like it. This is a completely artificial thing, a reframing of the problem into meaningless terms.

If this were any true ordinary headaches would not exist. They don't cause any physical injury and no one ever thinks it may be that unless the headaches are consistent and especially severe. Still hurt.

This thing where medicine decided that symptoms are actually irrelevant is probably the weirdest belief system currently in existence. The steps that had to lead this way tell of a system so broken it cannot possibly fix itself.

Wow, your last sentence is so true...

Is there no worry? I think, if there is, the medical community caused it. In the 50's the advise with acute backpain was bedrest. In the 70's and 80's scans and surgeries for everything. As a reaction to that came people like Sarno, with mind-body theories (that were of course mostly nonsense). The good thing that happened with Sarno's advise is that people (who were made to be afraid of their back by doctors) started moving again, which is (for a lot of backpain) actually a very good thing.

 

[rvallee]

Wow, your last sentence is so true...

Is there no worry? I think, if there is, the medical community caused it. In the 50's the advise with acute backpain was bedrest. In the 70's and 80's scans and surgeries for everything. As a reaction to that came people like Sarno, with mind-body theories (that were of course mostly nonsense). The good thing that happened with Sarno's advise is that people (who were made to be afraid of their back by doctors) started moving again, which is (for a lot of backpain) actually a very good thing.

I think one explanation is typical STEM field failure in dealing with things that maths can't solve. Medicine is a purely technical training, all maths and rote memorization. Health and illness do not fit in those boxes, so training is incompatible with real life in the same way as most engineers would struggle making beautiful designs. Many can, but it would be independent of their training.

It's a known problem that is usually discussed abstractly but frankly medicine has the most practical set of consequences of this problem, of people trained to think mechanically on problems that do not obey simple rules. The creep of psychology is the worst possible response to this, basically amplifying all the flaws and maximizing harms. All it does is jam simple wrong solutions to complex problems.

The answer is probably a more general training, with less emphasis on the technical side. Or perhaps a division of labor, with some doctors being trained to be purely technical and never have to interact with patients, and others trained in a way that is not strictly STEM, relies on softer skills, on communication and includes the other half of medicine that is not included in the medical curriculum: illness and its consequences. Physicians know next to nothing about illness, literally half of their job. That's absurd, and probably the main reason why medicine has fully stagnated outside of cutting edge research relying strictly on technology. The human side of things has not progressed in the last century, half-century at best.

 

[unicorn7]

I think it's difficult to see what's going on because of that dichotomy. On the on hand, the medical world falling for these kind of ridiculous simple solutions to complex problems, on the other hand super high tech cutting edge research going on in that same medical world.

Makes people believe that there must be really well thought out ideas and hypothesis on the basis of concepts like "central sensitization". I have tried to find out where that concept originated from, it's pretty hard to find out. It seems to me (after reading for while) based on some research with rats and then the whole thing got extrapolated, extrapolated some more and then some popular sauce was poured over it and now every GP in the world is saying central sensitization is the cause of everything, without having any clue what it actually means.

I think one of the problems is the extreme broadening of labels as well. 20% of the population is said to be suffering from IBS, what does that label even mean then? The problem is that these ridiculous broad and simple advises (eat well, no stress) might work on 80% of that group. Apparently it's no problems that the left over group (with actual life imparing problems) get ignored.

I sometimes feel like the world is upside down. Acute problems are taken very seriously, get a lot of attention. Get a lot of diagnostic work done. The longer you walk around with life impairing problems, the more you are ignored, the less anyone will look for a solution and the more simplistic advises you will get.
Then you get all these weird situations where a severe ME patient gets the "advise" to balance work and private life better