“So it all started in 1974…”
Sleep. I really understood, recently, how utterly healing it is. Intense caregiving, especially near the end, leads to sleeping in short increments. Often with one ear 'open.' Now, it's just me and the old dog, and we're both working through sleep adjustments. But, the release from stress and the gain on sleep has led to a lot less back pain and an increase in well-being. The subject matter of individual dreams does affect the quality of the day I find. I wish I could preset the subject matter before I go to sleep. That might affect the next day's emotional patterns. That said, I sure hope you find relief for your own issues soon.
The possible sleep connection is interesting to me because sleep is one of the few things that I know for certain has an effect on my pain; lack of / poor quality of sleep almost always leads to a "brittle" and weak feeling to my most common areas of pain that almost always leads to it worsening through the next day. A lot of times the best way I can describe my pain is "highly dynamic and unpredictable", and this is the one thing I'm positive of in terms of cause and effect. That doesn't mean good sleep (do I ever have it?) consistently has the opposite effect, either.
I don't have a sleep disorder, but the prolonged periods of intense insomnia describes me as well as "great worsenings".
Among the possible factors of unexplained chronic pain, I've read on your site, "inflammaging" resonates most with me, especially since some of my worse pain episodes "feel" like the tissues are inflamed and NSAIDs are effective for those types. Especially because lack of sleep might / does contribute to said inflammation, which can contribute back to lack of sleep, and sleep is needed to heal tissues effectively, and the whole process is great for injury and onto more inflammation.
I've also experienced several "Great Worsenings" myself; distinctly down the road and with wild new symptoms from what is the most "this sounds like the reason", which was a car crash followed by back pain lasting about 1-2 years, and then no trouble for another 5 years when the symptoms went crazy and multiplied.
Anyways, I've recently discovered this substack after first discovering and being majorly inspired and helped by painscience.com 7 or so years ago. Sorry you are going with it but thank you for sharing, hope some of the shared themes might resonate back with you.
I've been following your story for awhile, and have been especially interested in the benzo withdrawal angle. I've tried tapering off of Klonopin two times in the past, and always had horrible experiences and ended up going right back on. Somehow I gathered my courage to try again, and did a 9 month taper after having been on it for over 20 years. I have been off now for five months and still have lingering problems. But like you, I can't say that it is the cause for all of my problems, because I've had weird stuff since I was a kid. I've had sleep problems, too, and took Ambien nightly for 20 years. Off of that now, too. I can't say my life is any better, but maybe in time I'll reach a new normal.
Your blog helps me feel less alone! Thank you!!