It all started with musical guts, and ended in misery
Hi Paul, I've been a long-time reader and follower of your work! I found it back around maybe 2008-ish because of my own chronic pain, and then I went to school to became a RMT from 2011-2013, and was grateful to have the background of reading your work to give me a critical and informed approach about the limitations of the current curriculum in massage therapy education.... based on that background I was actually pretty disappointed in the education. Anyway, I haven't read your stuff in a while (I had a baby in 2020 and have been busy parenting), but I'm now catching up with Project try everything. I have also tried a lot of stuff for my own chronic pain and IBS, and the diet piece has been very helpful for me. I did a deep dive into reading about dietary stuff in around 2014 and came across the work of Sarah Ballantyne, Phd and did a couple of rounds of the autoimmune paleo protocol that she developed - I warn you that it is quite an intense and difficult dietary protocol, but in my opinion totally worth it. It helped me pinpoint a few different foods that I'm sensitive to and generally up-level my health. I would say it reduced my pain by around 50%, which is huge! Her work is very well referenced and evidence-based and I think you would appreciate her very grounded science approach. Here is a great place to start: https://www.thepaleomom.com/what-is-leaky-gut-and-how-can-it-cause/
I’ve had the same intuition and some light documentation proved it out. Now what? Constipation has been an unsolvable problem in my life but I’ve been sick for only eight years. (Only is a dumb word for this). I hope our responses to your posts help you figure things out. As you do well, so do those of us out here grateful for your powers of observation, documentation and scientific knowledge. There is a very definite correlation here!
You remind me of https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8145314/ Whitney Davis, CFS sufferer who experiences symptom severity correlating with gut. Do you experience mental PEM? Or just physical. Because I learnt that CFS is not the only illness that caused exercise intolerance. Also remind me of MJ FOX. "I can think of a thousand possible scenarios: I used to go fishing in a river near paper mills and eat the salmon I caught; I've been to a lot of farms; I smoked a lot of pot in high school when the government was poisoning the crops. But you can drive yourself crazy trying to figure it out" While less medically unexplained, the emotion and intuition bit you said struck a chord w me hehe. Did you know 70% of the immune system is in the gut? I feel like I learnt that from reading your articles
Hmmm, had something similar about 3 weeks ago. Felt like everything I ate for days was stuck in my stomach. It took hours of pacing, some Tums, Gas-X, and then, ahem, a cathartic event at 2 a.m. My digestion gets weird when I've been stooping or working overhead, with food feeling stuck due to slow transit constipation. I also lose core, deltoid, and quad strength, feel like I'm going to faint, like my brain gets tired, feel like I'm being strangled a little, and short of breath. This can go on for days after doing so much as cleaning the litterbox. This started in 11/2019 with multiple frustrating consultations since then. I moved to a new county within my state a few months ago and found some independent physicians. After suggesting it's all spine-related and being dismissed and even laughed at the past 3 years, it's highly likely there is positional cervical cord compression and cervicothoracic radiculopathy without radicular pain, except for sporadic stabbing pain in my left little finger.
I was thinking about your spreadsheet, and wondering whether it included -- I don't know what to call them -- physiological measures: things like pulse, temp, blood pressure, blood sugar. The reason I'm asking about this is that it seems like one of them might be a better and more enlightening predictor of symptoms than some measure of real-life activities. Here's a simple example: Say your problem was dizzy spells, but that you weren't knowledgable about the relationship between low blood pressure and dizziness. So you might find some weak association between dizzy spells and amt. water drunk, saltiness of food eaten, long period of sitting before spell happened upon standing -- but disregard these correlations, because they were low and you didn't see any obvious way they could be connected with dizziness. But if somebody the told you to measure blood pressure, you'd find a powerful correlation between blood pressure and dizzy spells. Water, salt, & sitting for a long time can all affect blood pressure, but for a given episode of dizziness the culprit might be only one of them -- say a day where you drank very little water. So the idea is that one these physiological measures might be later in the causal chain leading to malaise, etc., than daily activity measures. Various daily activities might all influence the physiological measure, but it not be possible to see the pattern if you looked at daily activities alone, because they're too far back on the causal chain, and each might be only one of several things that could influence the crucial physiological process.
I'm not sure what physiological measures are most promising. The ones I named are just low-hanging fruit. There might be others that are more promising to look at for you. Maybe measures of inflammation? I know there are lab tests for various of these. Maybe some of them are cheap and simple to test. Maybe you can order the test yourself, if not in Canada then from an Indian pharmacy? And of course there are fancier physiological measures that you can measure yourself with a fitbit or some such. I know a number of people right now think heart rate variability is an important measure. I have no idea whether it's valid to think it's important. But apparently you can keep track of it via gizmos that are easily purchased.
You probably know about the Quantified Self website. People there know a lot about how to measure various things. Might be worth checking out if you haven't already.
"I am skeptical that just a couple days of bowel stoppage could make me feel soooo baaaad."
On the other hand, feeling soooo baaaad for any reason might involve central sensitization, which is a suspect in gut disorders, too. An unalerted brain might happily ignore most murmurings from our visceral nervous system, but an alerted brain?...
At PainScience, you once explained your dad's hyperacusis, and that, while humans can share external references to what is "too loud", we sadly can't for pain. I often get hyperacusis with migraines, and experience that amplified sound and amplified pain during migraine seem convincingly similar (though, of course, our experiences can fool us, too). Whatever my brain is doing during a migraine, it seems pretty good at convincing itself that noxiously heightening all the senses, not just pain, is somehow a good idea.
This is comforting in a way, because while feeling sorry for oneself is a commonly-suspected reason for general malaise and sensitivity to pain, we don't expect people to sense light and sound more acutely just because they feel sorry for themselves! "Huh, I can't always control my silly brain" is less guilt-wracking than, "Can I be *sure* I haven't drama-queened my way into feeling crummy?"
EDITED TO ADD: Migraineurs frequently report that sensory disturbance precedes pain. An "alerty" brain prone to central sensitization may not start with pain-alerts. That you didn't start feeling soooo baaaad until after the auditory barrage doesn't exclude the possibility your CNS decided to get hypervigilant about gut sensation for some reason.
Wild that this is the first post you put out after I subscribe—I'm the poop scientist that commented on your last post suggesting microbiome sequencing.
You're right that the "gut tonics" space is full of scammers (existing probiotics generally do nothing) but I also don't think you should ignore your intuition; it sounds like your case onset WAS associated with major GI disruption.
You're wrong about one thing, though: it's not hard to falsify. In fact, it's pretty simple. Pretreat with a heavy duty course of antibiotics to clear out any pathogens, then get a fecal transplant to repopulate your GI tract with a healthy ecosystem (probably capsule-style, if you feel things are getting stuck "higher up").
Have a look through my posts, if you get a chance, or shoot me an email if you'd like to chat 1:1 about it. SDSkolnick@gmail.com