I have results! Spreadsheeting for the win!
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.
Love what you're doing.
How serious are you about "everything"?
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.
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
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.
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.)
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?).
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.