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Your articles on pain changed my perspective, initially I thought something had to be broken, or misbehaving to be triggering my nerves to be causing all my various medically unexplained symptoms. But now my understanding is, pain is just an opinion, but that doesn't exclude misbehaviour/brokenness, just that the opinion might be overrated. Is it possible that the various unexplained symptoms are also just an opinion, or doest it not work the same way? Because almost all my symptoms are purely sensory, they're all just opinions? Though there's way to verify any opinion.

Although, in your case because you have also got your poop issues, which is not just an opinion isn't it. Not saying it's all in the head, even though consciousness is, but is the mind overreacting. I'm just curious if pain is similar to other symptoms.

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Hello, Paul!

Love what you're doing.

How serious are you about "everything"?

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Thanks. 🙂 Hard to say, depends on how "everything" is defined! But I am certainly quite serious … within economic constraints. A year long sabbatical in paradise would be well worth trying, I’d say! But I simply cannot afford it.

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How much have you looked into the gut microbiome? It's my area of expertise and, in terms of explaining why one person is healthy and another is sick (especially if that person was healthy for much of their life), it's the logical place to start looking. It's a big soup of highly variable biochemistry, and some bits of it are absolutely essential to healthy function of the human body; things like the ability to shit out the heavy metals in your food, rather than absorbing them all.

It's also the only component of our biology that we regularly roll the dice on deleting huge swaths of, because the average American takes one course of antibiotics per year and we were never meant to be clean.

Don't know if you've seen it, but recent research suggests that everything from autism to multiple sclerosis to some types of Parkinson's may begin in the gut, with e.g. the wrong course of antibiotics. In all of those diseases, they've seen some remarkable improvements with a fecal transplant.

I saw your post where you described the "toothpaste shits", which makes me think there's something to the notion that your initial infection—or the attempts to treat it—may have fucked up your guts, and that this is the source of your issues.

Down to have your microbiome sequenced, see if we can get an idea what's goin' on down there?

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I have chronic pain for the last 20 years and I have a lot of trouble sleeping, I use zolpidem to sleep too, I cannot take it out anymore. I track my sleep with a phone app called "sleep as android" (I don't know any other app to compare), I turn it on before going to sleep and turn it off when I wake up, the phone goes at the side of the pillow and tracks how much I snore and move in my bed, I can add tags to every night. So I can generate statistics with some tags. I can confirm that my pain gets worse when I sleep worse (less time and more agitated, more agitated means I turn from side to side and don't remember it). I even bought a cheap security camera with night vision to record some nights and have sure about other problems, If I really was snoring, if I stopped breathing, If I breathe through my mouth, if the movement seen in the app is me turning from side to side or drinking water because my mouth is dry, in which position I sleep, etc. These things are not expensive and helps to make sure what is happening or if something was done, to make sure if it really helped or not.

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Interesting article! I guess you already know the Oura-Ring. I learned to focus not only on duration of sleep - but more on quality (deep sleep, lowest heart rate…). And what affects my sleep architecture the most (in a negative way): 1. late heavy meals 2. Alcohol.

Good luck and many pain-free times, greets from Cologne, Carsten

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Yay!

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Totally get how hard it is to get yourself to try new things when you're feeling like shit, and wish you well on this venture. Seems like a really good idea you had to do this publicly, so you have people like us to keep you honest and offer ideas and general support.

I know a fair amount about improving sleep -- have trouble sleeping myself, so have read up on it, and also help people with it in my work. Here's a chunk of what I know: In my experience, the most powerful lever there is to pull is also the most obnoxious one: Do not spend time in bed awake. Don't read, rest, watch TV or browse the internet there (that's already a big sacrifice for a lot of people) AND don't lie there tossing and turning. If you can't get to sleep after about 15 mins., get up and do something sort of boring, and keep doing it til you feel drowsy. I KNOW that's the last thing most people want to do, late at night, probably in a chilly house, but this is one of those no pain no gain things. To make it easier, have a place all set up & ready to sit and read or do paperwork, with an afghan to keep you warm. Do something like a crossword puzzle (unless you love crossword puzzles), read a dullish book, do paperwork. Keep doing it til you're drowsy. If you still can't fall asleep after 15 mins., get up and repeat. And I apologize for how unpleasant this prescription is, but it really is worth giving it a good solid try for at least 2 weeks.

The point of doing this is to build a strong association between bed and sleep. Years ago I had a powerful demonstration of the value of strengthening this association: When I was in college I formed the habit of doing a lot of wide-awake things while propped up in bed with a cup of tea or a snack on the table beside me. I chatted on the phone with friends from bed, did homework in bed, and wrote every single one of my papers in bed. I felt relaxed and cosy in bed, and thought it was odd that when I actually tried to go to sleep for the night (plopping my books & homework on the floor beside the bed) I had a terrible time falling asleep.

A few years later I did an intership where I was run ragged. Was out of the house 15 hours a day, & when I came home I just plopped into bed and went to sleep, without any reading or phone chat first. When that year ended I tried to resume my old cosy habit of reading and writing in bed, and I found I no longer enjoyed it. I'd prop myself up in my usual way, with a nice cup of tea beside me, open a book -- and get intolerably drowsy within 5 mins. I didn't actually fall asleep involuntarily (I have never done that in my life -- I'm doing well to fall asleep *voluntarily*), but I got so drowsy I wanted fiercely to nap.

What had happened was that I had built up a strong association between bed and sleep. If anyone had told me that breaking the reading-&-writing in bed habit would have such a powerful effect on me, I would not have believed them. But wow, it really did. So I recommend that if you are not already using this approach, you add it to things you nare doing to improve sleep.

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Thanks. 🙂 This wisdom is well known to me — as are most sleep management strategies! Been doing this a loooong time.

Personally, I’ve never found this one to be consistently important for me. It is important now and then, for sure. But it depends on the state I am in. I can "lie awake" very peacefully, partly because of decades of practice, and getting up would interrupt the process of slowly drifting back towards sleep.

But if I am agitated (with or without actually "tossing and turning")… oh yeah, THAT is when I need to get out of bed and "reset"!

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Yeah, I hear you, & to be honest that's what I mostly do too, if I wake up in the middle of the night. I'm not that motivated to stick to the full, radical sleep protocol because my sleep isn't terrible these days, just sort of mediocre. So what I have been doing is lying there for at least an hour, and maybe half the time I fall back asleep & half I don't, & if I haven't fallen asleep in an hour *then* I get up. Sometimes I just give up on sleeping any more that night, other times I eat something and try again, & that usually works.Still, I probably should start following the sleep protocol for those middle-of-the-night awakenings.

The intuition you and I both have, that we should lie there longer than 15 mins, because fairly often we drift back off to sleep, may be wrong. While clearly we both succeed in falling back to sleep sometimes after a longer period, maybe 40-60 mins, we may still be losing out in the big picture because we are weakening the association of bed with sleep by being willing to spend such a long time lying there wakeful. So my vote would be that since you are considering radical action to save yourself, you consider doing the *strict and unnpleasant* version of the sleep protocol for a month or so, to see whether the benefits outweigh the costs. And if you're reading or watching TV or anything like that in bed, you *really* should try cutting that out, even though intuition may tell you it's a nice way to wind down & get drowsy.

If you wanted to make a deal that we'd both follow the strict version for a month, hopping out of bed into our cold house air after 15 mins of wakefulness, I'd be down for that.

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LOL, excellent pitch! And I came very close to saying "sure, what the hell, let's go for it."

But I am juggling a lot of initiatives, and the cognitive load of all my priorities right now is quite intense, and so I need to pick my battles carefully. It isn't actually possible to "try everything," I am afraid!

So, I agree it’s worth trying, and it’s on my list. But I won't be trying it just yet. 🙂

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Sounds like a good decision — doesn’t work to try to hold yourself to too many regimens at once. I’m currently trying melatonin regimen recommended by Scott

Alexander and others. You’re probably familiar with it — 0.3 mg 7 hrs before you go to bed.

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This is an exciting finding! Thank you for sharing it. (As a terrible-sleeping maybe-maybe-not apneic who can’t tolerate any of the treatments, this will make me take protecting my sleep more seriously.)

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Paul, this is so exciting! Had you ever seen such a clear connection in the scientific literature between sleep and pain? I'm pretty sure sleep is often flagged as a variable that pain patients should work to optimize, but have you seen any studies show a result as clear as this? (If not, hello... researchers?).

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Not sure if this is exactly what you're looking for, but it's definitely in the right area

Agmon M and Galit Armon. “Increased insomnia symptoms predict the onset of back pain among employed adults.” PLOS One (2014); 9: 1-7.

Zarrabian MM, et al. “Relationship between sleep, pain, and disability in patients with spinal pathology.” Archives of Physical Medicine and Rehabilitation (2014); 95:1504-1509.

from https://backincontrol.com/the-4-stages/stage-1-laying-the-foundation/get-sleep/

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Thanks, always appreciate citations. These are certainly relevant, but none are looking specifically at correlations between daily variations in sleep and symptoms. It’s possible no one has ever done a study of exactly that thing. Such gaps are frustratingly common in the pain literature.

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and more citations from the article

20.Kaila-Kangas L, Kivimäki M, Härmä M, Riihimäki H, Luukkonen R, et al. (2006) Sleep disturbances as predictors of hospitalization for back disorders–a 28-year follow-up of industrial employees. Spine 31: 51–56.

View ArticleGoogle Scholar

21.Leger D, Guilleminault C, Dreyfus JP, Delahaye C, Paillard M (2000) Prevalence of insomnia in a survey of 12 778 adults in France. J Sleep Res 9: 35–42.

View ArticleGoogle Scholar

22.Marty M, Rozenberg S, Duplan B, Thomas P, Duquesnoy B, et al. (2008) Quality of sleep in patients with chronic low back pain: a case-control study. Eur Spine J 17: 839–844.

View ArticleGoogle Scholar

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0103591#pone.0103591-KailaKangas1

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Sleep deprivation over time has been very strongly linked to chronic widespread pain, but that's a broad correlation, much less granular than what I’ve done here. The sleep literature is pretty huge, so there MIGHT be some studies of the relationship between daily fluctuations in sleep pressure and symptoms… but, if so, I am not aware of it.

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Paul you’ve done a great service here and I will share this as far and wide as I can.

I get a lot of push back from clients when I stress how important it is to get disciplined about sleep habits in order to optimise sleep. Most people believe that their pain interferes with sleep (and of course it does) but poor sleep definitely worsens pain.

I understand it’s not fair, but people with chronic pain need to go above and beyond to optimise all facets of lifestyle/health as much as they can.

It’s the same with chronic fatigue.

The idea is to create an environment which supports the nervous system to return to homeostasis, and it doesn’t happen fast.

And it’s an ongoing experiment. How much exercise is the right level and how much is counterproductive, that kind of thing.

Truly Paul, great work and congrats on excellent findings which are not merely anecdotal in that they really do apply to everyone.

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I could easily be one of those clients giving pushback, which leads me to reflect on how to broach an Optimize All The Things strategy with someone who's likely to have been through the serial disappointments of the chronically ill.

I gather there's some controversy over how bunked/debunked the "marshmallow test" is:

https://anderson-review.ucla.edu/new-study-disavows-marshmallow-tests-predictive-powers/

but as far as I know, the University of Rochester follow-up study still stands. There's a description of it and a link to the study here:

https://jamesclear.com/delayed-gratification

The researchers in the UofR study found that children learn fairly quickly not to trust a promise of reward for delayed gratification if the promiser is unreliable at delivering the promised rewards, and will therefore quickly stop delaying gratification under those conditions.

Those conditions could describe the whole life of someone trying to manage a chronic, poorly-understood illness. Someone in that predicament has likely heard no end of promises from professional and amateur well-wishers alike, that if you try this One Weird Trick, you can help make yourself better. And then the One Weird Trick doesn't work reliably. Or the next one. Or the next one.

Serial disappointment can make motivation tough. And the holy grail of Optimizing Everything makes a handy club to beat yourself up with, if you're prone to that.

I think some of the best behavioral counseling I got was from someone who didn't overpromise. He was a sports/performance psychologist. As he put it, he'd seen a lot of people, tested a lot of strategies, could recommend plenty that, in his clinical experience, were likely to work. And, if one didn't work after you'd given it a good-faith try, he had others.

He sherpa'd his clients through manageable (manageable being key) self-experiments in habit changes. Would it have been even better if he had properly-controlled study data, not just clinical experience, to back up his advice? Sure! But, importantly, he didn't inflate the evidentiary power of his clinical experience. And so he didn't overpromise. Nor did he assume that reported failure of a strategy could only be evidence of not having tried the strategy hard enough. If you reported failure, he'd ask a few probing questions as to whether you *really* tried it, but he ultimately trusted clients to be honest about whether they had -- also super important!

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"the holy grail of Optimizing Everything makes a handy club to beat yourself up with, if you're prone to that."

That's a good point. The OE strategy can be a trap. And this is why I think it’s important to emphasize optimizations that are inherently valuable and desirable, regardless of whether they have an impact on symptoms. Most people aren't going to regret improving their sleep, for instance. 🙂

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Most definitely Paul. It still has to be doable, with greater upside than risk.

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