Paul, I can't see if you mentioned it before but I just read a post from someone about their ordeal with Lymes disease and Co-infections and you sprang to mind as symptoms sound very similar. Give it a quick read and see what you think.
Thanks. I’m a poor candidate for a diagnosis of post-lyme disease syndrome for a variety of reasons, and several other possibilities are more plausible in my case. It’s important to note that post-Lyme disease syndrome is almost certainly over-diagnosed in people with any of several other sneaky causes of chronic illness. It’s just one of many kinds of post-infection syndrome.
Very sorry nothing was revealed with your meticulous tracking. I work with post-concussion patients and one of the general recommendations includes tracking symptoms along with weather, hydration, etc., to identify patterns. Out of all the patients I've worked with I think this was helpful for exactly one person. I'm careful not to suggest this across the board now. For some people it just is too frustrating when no patterns are found.
Then I did it to myself! I had strange long-Covid symptoms and naively thought if I just tracked enough I could get ahead of the symptoms and prevent them before they happened. I did it for about six months before accepting it was going nowhere.
Brains, bodies, and the environment they interact in are just too complex. And we don't know enough about what they're doing from day to day to find patterns. Like you said, some can be very obvious and repeatable. Red wine = migraine for me. Always will. But gin and tonic only= migraines sometimes. And it doesn't correlate with my monthly cycle like I thought it would. But I got tired of playing roulette so I don't drink anymore.
Paul your courage, commitment and consistency are completely off the charts. While I’m sorry the project didn’t bear fruit I think it provides one of the most important lessons possible - that what we believe may be causative is most likely not.
So many people state with complete confidence “a does b to my c” and they do that from their perception and beliefs instead of from actual data over time.
I was struck by how intensely I believed in the relationship when I seemed to have decent data to back it up. I was rationally aware that the data wasn't really all THAT good, but still… I had exercised considerable discipline in avoiding a premature conclusion, and when I finally decided that I had enough decent data, my confidence in the conclusion shot way up to the top of the scale. I truly thought I was onto something… and I was properly befuddled when the pattern fell apart. It was not easy to accept.
Arghh the tedium of logging, only to have it not bear fruit. That sucks. For what it’s worth, I used to log symptoms constantly too (one part of that was for diagnosis of a hormonal disorder that could actually be tracked, and could only be diagnosed by tracking, but the specific symptoms were meaningless). Since joining my imperfect but useful CFS/long covid/fibro/related conditions recovery programme I have enjoyed their paradigm of not focusing on the symptoms at all, but rather focusing on health (health behaviours and health progress). From 20 years of practice their experience is that tracking symptoms doesn’t get you anywhere and the specific symptoms are often meaningless; all of them represent a dysfunctional and dysregulated system overall. It was a relief to let go of paying attention to them, because they were invariably bleak, and paying attention didn’t seem to change anything except my mood, which got lower! (My mum always says “where attention goes, energy flows”, and it always used to annoy me but it really proved true in this context.) And I have improved a lot over time, a rising tide of health easing all kinds of unrelated-seeming symptoms, so that is reinforcing as well. Obviously it was not just the release of focus on symptoms that has done that, but it was a necessary piece.
You know far more than me on science etc; I don’t know how relatable any of my experience would be to yours, of course! I am so wary of telling people stuff they already know or aren’t interested in 😄
🤣 Well, that is … not a specific association I have ever perceived. Sorry you had that reading experience, but I’m fairly sure it isn't the typical one!
Oooohhhhh dude. This really sucks. I had a my own Spreadsheet of Misery back in 2007-08, and I had a very similar experience. Couldn’t figure out one damn thing from it. (CFS/ME type thing, probably 20 different symptoms, 15 of which came and went in completely incomprehensible ways.)
Eventually I got mostly better. Never regained all my energy or resilience, but enough to be pretty active and functional, to hike and ride my bike and swim. Developed occasional migraines. Then on 2019 a mild whiplash and concussion plunged me into a 5- year saga of pain, debilitating fatigue, migraines, constant headache, dizziness, brain fog, etc etc. I can’t work, and I can’t play much either. So yeah. Just know you’re not alone — for what that’s worth! — and the struggle is struggly as fuck.
I am delighted to hear that you eventually got mostly better, although the descent back into awfulness in 2019 takes a lot of the happiness out of that. Still, it’s lovely to hear that anyone EVER wriggles free of any CFS/ME type thing! How long were you in a poor state originally?
"Interestingly" I just had my first ever experience with a painless migraine (aura only) with no clear trigger. I’ve had this before many times, but only with the obvious trigger of intense exercise. This one struck like lightning out of a clear blue sky. A bit ominous.
Well, *that* time I was really unwell for about a year and then slowly got better over the course of a second year. As I look back on my life, trying to figure out the latest awfulness, I realize there have been other periods with some similar symptoms, dating back to about 7th grade. Then 11th grade (bad case of mono, hard to shake fatigue), then undiagnosed lingering cough and fatigue in soph year of college (1982. I’m old). Docs said it was probably a mycoplasmic lung thing, but they really didn’t know. That was about five months of fun.
Then another bout of really debilitating fatigue, first one that really included brain fog, in around 2000-2001. Vigorous exercise helped then, but not now. Also small dose of fluoxetine (10 mg/day).
I have a history of infections (starting as an infant), and I’ve also always taken a really long time to heal from injuries of all kinds. I’ve had three or four concussions from various adventures (rugby, skateboarding, walking into a tree branch while dazzled from bright sun), including the car accident that seemed to trigger the chronic migraines.
“Interestingly,” the first migraine that I knew was a migraine was aura-only as well. Also no clear trigger. But now I think that some other episodes that I originally took for food poisoning or a GI virus were also severe migraines.
I’m nattering on about this in far more detail than I normally would in a blog comment, but I do see some similarities between some of what I’ve experienced and your awfulness.
I’ve gotten some noticeable relief from low-dose naltrexone in the areas of inexplicable full-body pain, [REDACTED] problems and nausea. Still have constant headache, brain fog , fatigue, dizziness, lapses in coordination etc. Also when I have a fatigue crash it feels like early stages of a virus. Sore throat, neck glands, thermoregulation issues. But having less pain is good.
Please feel free to contact me if you want to chat or just vent. This shit is so grindingly frustrating. I miss my old life!
I’m so sorry you’re dealing with all this! It is validating though that tracking and logging is fairly fruitless. I have mostly abandoned trying to look at dietary triggers for any number of symptoms but occasionally I still get sucked into thinking if only… I want to have some control when in reality I don’t have much control at all! It’s freeing at times. But also frustrating! You’re not a failure!
I suppose I probably always knew that I was unlikely to find any answers by logging. But I had to TRY. That was the spirit of the thing. The TRYING was needful. It MIGHT have achieved something!
But yeah, we really just have very, very little control over our lives in general — and even less so when some kind of illness has a grip on us.
Paul, I can't see if you mentioned it before but I just read a post from someone about their ordeal with Lymes disease and Co-infections and you sprang to mind as symptoms sound very similar. Give it a quick read and see what you think.
https://www.imra.ie/forum/topic/id/6739
Thanks,
JK
Thanks. I’m a poor candidate for a diagnosis of post-lyme disease syndrome for a variety of reasons, and several other possibilities are more plausible in my case. It’s important to note that post-Lyme disease syndrome is almost certainly over-diagnosed in people with any of several other sneaky causes of chronic illness. It’s just one of many kinds of post-infection syndrome.
Very sorry nothing was revealed with your meticulous tracking. I work with post-concussion patients and one of the general recommendations includes tracking symptoms along with weather, hydration, etc., to identify patterns. Out of all the patients I've worked with I think this was helpful for exactly one person. I'm careful not to suggest this across the board now. For some people it just is too frustrating when no patterns are found.
Then I did it to myself! I had strange long-Covid symptoms and naively thought if I just tracked enough I could get ahead of the symptoms and prevent them before they happened. I did it for about six months before accepting it was going nowhere.
Brains, bodies, and the environment they interact in are just too complex. And we don't know enough about what they're doing from day to day to find patterns. Like you said, some can be very obvious and repeatable. Red wine = migraine for me. Always will. But gin and tonic only= migraines sometimes. And it doesn't correlate with my monthly cycle like I thought it would. But I got tired of playing roulette so I don't drink anymore.
Paul your courage, commitment and consistency are completely off the charts. While I’m sorry the project didn’t bear fruit I think it provides one of the most important lessons possible - that what we believe may be causative is most likely not.
So many people state with complete confidence “a does b to my c” and they do that from their perception and beliefs instead of from actual data over time.
Thanks for the effort.
I was struck by how intensely I believed in the relationship when I seemed to have decent data to back it up. I was rationally aware that the data wasn't really all THAT good, but still… I had exercised considerable discipline in avoiding a premature conclusion, and when I finally decided that I had enough decent data, my confidence in the conclusion shot way up to the top of the scale. I truly thought I was onto something… and I was properly befuddled when the pattern fell apart. It was not easy to accept.
Really QUITE a good science lesson. 🙂
Arghh the tedium of logging, only to have it not bear fruit. That sucks. For what it’s worth, I used to log symptoms constantly too (one part of that was for diagnosis of a hormonal disorder that could actually be tracked, and could only be diagnosed by tracking, but the specific symptoms were meaningless). Since joining my imperfect but useful CFS/long covid/fibro/related conditions recovery programme I have enjoyed their paradigm of not focusing on the symptoms at all, but rather focusing on health (health behaviours and health progress). From 20 years of practice their experience is that tracking symptoms doesn’t get you anywhere and the specific symptoms are often meaningless; all of them represent a dysfunctional and dysregulated system overall. It was a relief to let go of paying attention to them, because they were invariably bleak, and paying attention didn’t seem to change anything except my mood, which got lower! (My mum always says “where attention goes, energy flows”, and it always used to annoy me but it really proved true in this context.) And I have improved a lot over time, a rising tide of health easing all kinds of unrelated-seeming symptoms, so that is reinforcing as well. Obviously it was not just the release of focus on symptoms that has done that, but it was a necessary piece.
You know far more than me on science etc; I don’t know how relatable any of my experience would be to yours, of course! I am so wary of telling people stuff they already know or aren’t interested in 😄
This isn’t what you want to hear, but every time I read REDACTED, my brain reflexively replaced it with PENIS… and it made absolutely no PENIS sense.
🤣 Well, that is … not a specific association I have ever perceived. Sorry you had that reading experience, but I’m fairly sure it isn't the typical one!
Oooohhhhh dude. This really sucks. I had a my own Spreadsheet of Misery back in 2007-08, and I had a very similar experience. Couldn’t figure out one damn thing from it. (CFS/ME type thing, probably 20 different symptoms, 15 of which came and went in completely incomprehensible ways.)
Eventually I got mostly better. Never regained all my energy or resilience, but enough to be pretty active and functional, to hike and ride my bike and swim. Developed occasional migraines. Then on 2019 a mild whiplash and concussion plunged me into a 5- year saga of pain, debilitating fatigue, migraines, constant headache, dizziness, brain fog, etc etc. I can’t work, and I can’t play much either. So yeah. Just know you’re not alone — for what that’s worth! — and the struggle is struggly as fuck.
I am delighted to hear that you eventually got mostly better, although the descent back into awfulness in 2019 takes a lot of the happiness out of that. Still, it’s lovely to hear that anyone EVER wriggles free of any CFS/ME type thing! How long were you in a poor state originally?
"Interestingly" I just had my first ever experience with a painless migraine (aura only) with no clear trigger. I’ve had this before many times, but only with the obvious trigger of intense exercise. This one struck like lightning out of a clear blue sky. A bit ominous.
Well, *that* time I was really unwell for about a year and then slowly got better over the course of a second year. As I look back on my life, trying to figure out the latest awfulness, I realize there have been other periods with some similar symptoms, dating back to about 7th grade. Then 11th grade (bad case of mono, hard to shake fatigue), then undiagnosed lingering cough and fatigue in soph year of college (1982. I’m old). Docs said it was probably a mycoplasmic lung thing, but they really didn’t know. That was about five months of fun.
Then another bout of really debilitating fatigue, first one that really included brain fog, in around 2000-2001. Vigorous exercise helped then, but not now. Also small dose of fluoxetine (10 mg/day).
I have a history of infections (starting as an infant), and I’ve also always taken a really long time to heal from injuries of all kinds. I’ve had three or four concussions from various adventures (rugby, skateboarding, walking into a tree branch while dazzled from bright sun), including the car accident that seemed to trigger the chronic migraines.
“Interestingly,” the first migraine that I knew was a migraine was aura-only as well. Also no clear trigger. But now I think that some other episodes that I originally took for food poisoning or a GI virus were also severe migraines.
I’m nattering on about this in far more detail than I normally would in a blog comment, but I do see some similarities between some of what I’ve experienced and your awfulness.
I’ve gotten some noticeable relief from low-dose naltrexone in the areas of inexplicable full-body pain, [REDACTED] problems and nausea. Still have constant headache, brain fog , fatigue, dizziness, lapses in coordination etc. Also when I have a fatigue crash it feels like early stages of a virus. Sore throat, neck glands, thermoregulation issues. But having less pain is good.
Please feel free to contact me if you want to chat or just vent. This shit is so grindingly frustrating. I miss my old life!
I’m so sorry you’re dealing with all this! It is validating though that tracking and logging is fairly fruitless. I have mostly abandoned trying to look at dietary triggers for any number of symptoms but occasionally I still get sucked into thinking if only… I want to have some control when in reality I don’t have much control at all! It’s freeing at times. But also frustrating! You’re not a failure!
I suppose I probably always knew that I was unlikely to find any answers by logging. But I had to TRY. That was the spirit of the thing. The TRYING was needful. It MIGHT have achieved something!
But yeah, we really just have very, very little control over our lives in general — and even less so when some kind of illness has a grip on us.
I feel for you. I really do.