Hi Paul just saw your substack and thought to mention Dr Jack Kruse ...a retired neurosurgeon, wrote a book called The Leptin Rx. Light/water/magnetism, he's also got a great website you can look over the forum/posts. Best wishes. https://jackkruse.com/my-leptin-prescription/
So sorry, dude, really sucks. " A healthy man wants a thousand things, a sick man just one." I'm on a similar quest re: my adult son's undiagnosed leg pain. I call it Project Rabbit Hole... I take a deep breath and go down one everyday (internet)... and when I reach the next level I just see more rabbit holes to choose from...
I know you said you aren't answering "have you trieds" so I'll just say re: the pain pings...are they sharp and nasty? I chalk those up to oxalates, which I can reliably see dumping out of my system on a 24 hour urine study or an OAT, dealers' choice.
Did I say that? 🙂 Turns out I have been answering quite a few despite that. I should probably cut back.
The pain pings are DIVERSE above all else. I think of them as pings if they are relatively sudden and brief, but there is considerable variety within that basic template. But many are more classic, the type that gave the category its name: sharp quality, surging to full strength within a few seconds, then quickly fading over the next 30-90 seconds.
Most of those all-too familiar to me. I’ve gotten to the point where the only thing that's predictable about my pain is that it’s unpredictable. There are some themes, but no theme is more prominent than "expect the unexpected."
For instance, last week I had a completely new one, like nothing I have ever felt before: "jaw pain", but the devil is in the many odd qualitative details. A matched set of focal, crampy, tingling patches of pain on the external surface of the mandibular angle. Reminded me of the discomfort of salivary glands going nuts in response to something super sour, but it was definitely superficial, not in the mouth. And INTENSE, worse than a bad headache, disabling, and constant for hours.
This symptom shat all over two full days, and then just … went away. FFS.
Ugh, that's wild. But while I don't believe everything happens for a reason in life, I do believe everything happens for a reason in our bodies. I have nasty pain there too...currently chalking it up to c1/c2 rotation and instability, as there seems to be a muscle right under that's stabilizing my neck while my ligaments slack off.
I just hope someday, in our lifetimes, preferably our NEAR lifetimes, there's an explanation for all this. I want it to all make sense!
Thanks. Yes, very thoroughly and rigorously, for many years, starting from long before I had my own health issues. In fact, I’m getting to the point in my career where I can probably claim that I’ve "looked into the mind body connection" more than Sarno ever did. 😉
For the butt cramps, try slathering the whole area with lidocaine cream. Then sit on a rolled-up bath towel, which gives good even pressure to all the muscles and nerves (so many nerves bundled right there.). Do not try to go to the toilet, that'll make it worse and you'll end up in a cold sweat on the floor (you probably know that.)
That symptom is a serious head scratcher. A bizarre symptom on its own, distinctive and potent, and perfectly replicated in two family members. Obviously genetics is involved somehow, but HOW? What HERITABLE mechanism would it be? I simply have no idea, and I have been wondering for years — and at an "expert" level, no less, insofar as I am immersed full-time in the study of pain and how it works. I don’t even have a sense of the GENERAL mechanism. That is, it doesn't resemble any major TYPE of musculoskeletal pain that I’m aware of, such as neuropathy, or claudication, or cramp. It isn't a good fit for anything!
"some posts could seem a bit boring and self-obsessed, and I’m not exactly thrilled about that...
"But this is, by the way, another shitty thing about mystery illness. It’s not just the discomfort with being more vulnerable and needy, it’s the not even having an excuse for it: not a 'good' one, not one that is known."
I've noticed that much well-meaning advice directed toward the ill, especially the "unofficially" ill, amounts to, "Have you considered being less self-absorbed?"
Argh! Yes, we have! Rarely have we gotten absorbed in our frustrating selves with their frustrating problems just for kicks. The world is big and wonderful and filled with things we'd rather be absorbed in -- careers, families, hobbies... But when we can't rely on our own bodies, others can't rely on us, which unsurprisingly obligates us to focus inward, on fixing ourselves. I didn't plan to lose work to sickliness, or to be officially the mom of N kids but unofficially the mom of N + 1 because my body sometimes plays the biggest baby of the bunch. I understand others' boredom with my problems: they're not half as bored of me as I am.
"why rumination may be a common human response... Havinga built-in impulse to think back on failures and analyze what wentwrong may be a powerful aid to adaptive learning and improvement in performance. Individuals who learn from their mistakes viacontinued rumination may succeed better subsequently, and so theimpulse to ruminate after failure may have had a broad advantagein natural selection." And "If the core purpose of rumination is to discover alternatepathways to blocked goals, this would be quite useful and adaptive when goals are attainable but would remain doomed and futilewhen goals are in fact unattainable."
Between "attainable" and "unattainable" lies uncertainty. The Big Maybe. Not knowing what's attainable. The authors distinguish helpful "action rumination" from unhelpful "state rumination", but what's the diff when the action is "gamble on resolving a poorly-understood long-term sickly state"?
Have we tried less rumination? Less self-absorption? Yeah, probably. But, Paul... have you tried tubaquatic chakracize yet? ;-P Tuba blasts, I hear, are even more chakra-clearing underwater!
Hi, Midge. Thanks for that excellent comment, sorry I’m rather slow reacting. I also see below that I thought Leslie was compliment the main post, but I am not used to the organization of the comments here and I see now that she may have been complimenting your comment. Not sure. In any case, your comment does deserve the praise! Good stuff.
I'll add submarine tuba blasts to my master list of things to try. 😜
As I sit here all depressed about my burny stabby foot (it can reach 9 in pain) and regularly moan about my various neuropathies, I am absolutely horrified and humbled that you have trigeminal pain. Targeting the face is not fair ball 😡 I am so eager for you to find a solution.
Thank you, Diana. I am very "lucky" that my trigeminal pain is tame for that particular species. Still, it’s not nothing, and I quite agree: the face is a rotten place for pain.
As always I’m so sorry for what you are going through.
As far as the particular symptoms you just described, it’s like you interviewed me in depth and wrote down all that I said. I’m certain I have the countless other symptoms as well. You put it all so well.
So what’s going on here? People with almost identical lives - there must be a THING. Do you think it is what Jeanne said? Dysautonomia? I’ve been told I have a disregulated nervous system. What is the difference?
The sameness of it all is, label or not, the symptoms are relentless and there is nothing medicine can do. There again, a label would make my inner life more bearable.
The sameness is a bit of an illusion, I think. There are many diverse pathological mechanisms for amazingly similar major symptoms. Fatigue and pain and nausea can be caused by practically anything. The early stages of many diseases, and the main stages of many subtler ones (like post-viral syndrome) are virtually indistinguishable: the blahs, feeling sore and fragile. These are symptoms of almost anyone's system under ANY kind of serious strain.
Dysautonomia is quite a specific neurological problem, but with widespread effects, because the autonomic nervous system is what regulates organ function — mess with it, and you'll get a bunch of weird symptoms. "Disregulated nervous system" could be an imprecise reference to that, but who knows? Depends on who told you and why. It could also just be a ridiculously vague non-diagnosis. It’s not really any different from saying "your nervous system isn't working right," which obviously isn't actually a diagnosis.
I’m sure you’re correct about it being just another ridiculously vague non-diagnosis. I have about eight of those. I’m sure you do too. I’m in my eighth year of this stupid “illness.” At this point I’m beginning to give up hope. But I noticed I must not have given up completely since I’m happily willing to join your try everything journey. Thank-you for that.
first, I am terribly sorry you're dealing with this. Second, I had a mystery disease almost identical to what you're describing, with some variations of symptoms. Third, I still have it, but now it has a name- dysautonomia, specifically the type known as neurocardiogenic syncope. There are more than 10 types of dysautonomia.
Thirdly, I'm going to go out on a linb and give you some suggestions-- which I know very well, are soooo annoying to get because most people have no clue or first hand experience but they "read an article " and now they know exactly what you should do
《eyeroll》
So bear with me.
You should really get tested for dysautonomia - you need to get your primary care provider to refer you to someone who can do a tilt table test, usually an arrhythmia specialist.
Dysautonomia is a multi headed beast and sneaks around in your body in disguise which makes it really hard to diagnose. It can be caused by a whole range of things from a viral infection to emotional trauma. most people never are able to identify the exact cause. But it doesn't really matter.
you can email me if you want to talk about it more.
then, have you considered Ehlers Danlos syndrome? it's worth checking out. Another thing that wears a lot of disguises.
have you had an ANA test done? (anti nuclear antibody test) Great idea to get it checked as a baseline - there's obviously SOMETHING WRONG and it's very complex down to the cellular level. Your mitochondria are not well.
Fibromyalgia is probably a given, and should be assumed.
if you want to start deepening your understanding of the nervous system as well as physiology and nutrition I can't recommend highly enough the podcasts and YouTube videos by Dr Andrew Huberman and Dr Rhonda Patrick.
thanks for your bravery on behalf of all chronically unwell people who deal with mystery, illness and "invisible" illness.
Hi, Jeanne. Thanks for your kind efforts. It’s not "annoying" to get helpful suggestions. 🙂 But it is mostly just futile: it’s just about impossible at this point to suggest anything I haven't already considered to some degree. If something didn't make it into my diagnostic theories post, there's probably a good reason for it!
I am so sorry you’re going through this. I get the line about it not inviting the same response as, I have MS. As someone who also has had chronic pain and lots of weird symptoms, I feel badly that I am sometimes jealous of my brother who has Parkinson’s. People always say he’s inspiring and a hero! I hope you keep writing despite your self/consciousness because I feel less alone.
Hi Paul just saw your substack and thought to mention Dr Jack Kruse ...a retired neurosurgeon, wrote a book called The Leptin Rx. Light/water/magnetism, he's also got a great website you can look over the forum/posts. Best wishes. https://jackkruse.com/my-leptin-prescription/
So sorry, dude, really sucks. " A healthy man wants a thousand things, a sick man just one." I'm on a similar quest re: my adult son's undiagnosed leg pain. I call it Project Rabbit Hole... I take a deep breath and go down one everyday (internet)... and when I reach the next level I just see more rabbit holes to choose from...
I know you said you aren't answering "have you trieds" so I'll just say re: the pain pings...are they sharp and nasty? I chalk those up to oxalates, which I can reliably see dumping out of my system on a 24 hour urine study or an OAT, dealers' choice.
Did I say that? 🙂 Turns out I have been answering quite a few despite that. I should probably cut back.
The pain pings are DIVERSE above all else. I think of them as pings if they are relatively sudden and brief, but there is considerable variety within that basic template. But many are more classic, the type that gave the category its name: sharp quality, surging to full strength within a few seconds, then quickly fading over the next 30-90 seconds.
I feel like I can quantify my flavors:
1) Clunky "off" pain—something is low key displaced due to hEDS
2) Sharp, quick, severe, transient, small scale—oxalates
3) Spasming, lockdown, you're DONE muscular takeover—I moved too fast
4) Achey, dull—lactic acid from various sources, a big one being my muscles trying to hold me together
5) Burning, diffuse—MCAS or just general inflammation pain
The big ones, anyway.
Most of those all-too familiar to me. I’ve gotten to the point where the only thing that's predictable about my pain is that it’s unpredictable. There are some themes, but no theme is more prominent than "expect the unexpected."
For instance, last week I had a completely new one, like nothing I have ever felt before: "jaw pain", but the devil is in the many odd qualitative details. A matched set of focal, crampy, tingling patches of pain on the external surface of the mandibular angle. Reminded me of the discomfort of salivary glands going nuts in response to something super sour, but it was definitely superficial, not in the mouth. And INTENSE, worse than a bad headache, disabling, and constant for hours.
This symptom shat all over two full days, and then just … went away. FFS.
Ugh, that's wild. But while I don't believe everything happens for a reason in life, I do believe everything happens for a reason in our bodies. I have nasty pain there too...currently chalking it up to c1/c2 rotation and instability, as there seems to be a muscle right under that's stabilizing my neck while my ligaments slack off.
I just hope someday, in our lifetimes, preferably our NEAR lifetimes, there's an explanation for all this. I want it to all make sense!
Have you looked into the mind body connection? Dr Sarno, somatic therapy, working on healing emotional trauma?
These are the areas I'm exploring now in my quest to heal myself.
Feel better asap!
Thanks. Yes, very thoroughly and rigorously, for many years, starting from long before I had my own health issues. In fact, I’m getting to the point in my career where I can probably claim that I’ve "looked into the mind body connection" more than Sarno ever did. 😉
For the butt cramps, try slathering the whole area with lidocaine cream. Then sit on a rolled-up bath towel, which gives good even pressure to all the muscles and nerves (so many nerves bundled right there.). Do not try to go to the toilet, that'll make it worse and you'll end up in a cold sweat on the floor (you probably know that.)
Lidocaine is my friend.
I have done very little experimenting with lidocaine. I should fix that.
Fascinating that your mother shares that one symptom
That symptom is a serious head scratcher. A bizarre symptom on its own, distinctive and potent, and perfectly replicated in two family members. Obviously genetics is involved somehow, but HOW? What HERITABLE mechanism would it be? I simply have no idea, and I have been wondering for years — and at an "expert" level, no less, insofar as I am immersed full-time in the study of pain and how it works. I don’t even have a sense of the GENERAL mechanism. That is, it doesn't resemble any major TYPE of musculoskeletal pain that I’m aware of, such as neuropathy, or claudication, or cramp. It isn't a good fit for anything!
"some posts could seem a bit boring and self-obsessed, and I’m not exactly thrilled about that...
"But this is, by the way, another shitty thing about mystery illness. It’s not just the discomfort with being more vulnerable and needy, it’s the not even having an excuse for it: not a 'good' one, not one that is known."
I've noticed that much well-meaning advice directed toward the ill, especially the "unofficially" ill, amounts to, "Have you considered being less self-absorbed?"
Argh! Yes, we have! Rarely have we gotten absorbed in our frustrating selves with their frustrating problems just for kicks. The world is big and wonderful and filled with things we'd rather be absorbed in -- careers, families, hobbies... But when we can't rely on our own bodies, others can't rely on us, which unsurprisingly obligates us to focus inward, on fixing ourselves. I didn't plan to lose work to sickliness, or to be officially the mom of N kids but unofficially the mom of N + 1 because my body sometimes plays the biggest baby of the bunch. I understand others' boredom with my problems: they're not half as bored of me as I am.
"why rumination may be a common human response... Havinga built-in impulse to think back on failures and analyze what wentwrong may be a powerful aid to adaptive learning and improvement in performance. Individuals who learn from their mistakes viacontinued rumination may succeed better subsequently, and so theimpulse to ruminate after failure may have had a broad advantagein natural selection." And "If the core purpose of rumination is to discover alternatepathways to blocked goals, this would be quite useful and adaptive when goals are attainable but would remain doomed and futilewhen goals are in fact unattainable."
http://assets.csom.umn.edu/assets/166704.pdf
Between "attainable" and "unattainable" lies uncertainty. The Big Maybe. Not knowing what's attainable. The authors distinguish helpful "action rumination" from unhelpful "state rumination", but what's the diff when the action is "gamble on resolving a poorly-understood long-term sickly state"?
Have we tried less rumination? Less self-absorption? Yeah, probably. But, Paul... have you tried tubaquatic chakracize yet? ;-P Tuba blasts, I hear, are even more chakra-clearing underwater!
Hi, Midge. Thanks for that excellent comment, sorry I’m rather slow reacting. I also see below that I thought Leslie was compliment the main post, but I am not used to the organization of the comments here and I see now that she may have been complimenting your comment. Not sure. In any case, your comment does deserve the praise! Good stuff.
I'll add submarine tuba blasts to my master list of things to try. 😜
Haha. Excellent post... all around.
Thanks, Leslie. And welcome. 🙂
Ever have a root canal?
Here's a shot-in-the-dark for your symptoms: "The Toxic Tooth"
https://www.amazon.com/dp/0983772827/?coliid=IHXBA2L0ZDN14&colid=1YG73Y9K3RITZ&psc=1&ref_=lv_ov_lig_dp_it
As I sit here all depressed about my burny stabby foot (it can reach 9 in pain) and regularly moan about my various neuropathies, I am absolutely horrified and humbled that you have trigeminal pain. Targeting the face is not fair ball 😡 I am so eager for you to find a solution.
Thank you, Diana. I am very "lucky" that my trigeminal pain is tame for that particular species. Still, it’s not nothing, and I quite agree: the face is a rotten place for pain.
As always I’m so sorry for what you are going through.
As far as the particular symptoms you just described, it’s like you interviewed me in depth and wrote down all that I said. I’m certain I have the countless other symptoms as well. You put it all so well.
So what’s going on here? People with almost identical lives - there must be a THING. Do you think it is what Jeanne said? Dysautonomia? I’ve been told I have a disregulated nervous system. What is the difference?
The sameness of it all is, label or not, the symptoms are relentless and there is nothing medicine can do. There again, a label would make my inner life more bearable.
The sameness is a bit of an illusion, I think. There are many diverse pathological mechanisms for amazingly similar major symptoms. Fatigue and pain and nausea can be caused by practically anything. The early stages of many diseases, and the main stages of many subtler ones (like post-viral syndrome) are virtually indistinguishable: the blahs, feeling sore and fragile. These are symptoms of almost anyone's system under ANY kind of serious strain.
Dysautonomia is quite a specific neurological problem, but with widespread effects, because the autonomic nervous system is what regulates organ function — mess with it, and you'll get a bunch of weird symptoms. "Disregulated nervous system" could be an imprecise reference to that, but who knows? Depends on who told you and why. It could also just be a ridiculously vague non-diagnosis. It’s not really any different from saying "your nervous system isn't working right," which obviously isn't actually a diagnosis.
I’m sure you’re correct about it being just another ridiculously vague non-diagnosis. I have about eight of those. I’m sure you do too. I’m in my eighth year of this stupid “illness.” At this point I’m beginning to give up hope. But I noticed I must not have given up completely since I’m happily willing to join your try everything journey. Thank-you for that.
first, I am terribly sorry you're dealing with this. Second, I had a mystery disease almost identical to what you're describing, with some variations of symptoms. Third, I still have it, but now it has a name- dysautonomia, specifically the type known as neurocardiogenic syncope. There are more than 10 types of dysautonomia.
Thirdly, I'm going to go out on a linb and give you some suggestions-- which I know very well, are soooo annoying to get because most people have no clue or first hand experience but they "read an article " and now they know exactly what you should do
《eyeroll》
So bear with me.
You should really get tested for dysautonomia - you need to get your primary care provider to refer you to someone who can do a tilt table test, usually an arrhythmia specialist.
Dysautonomia is a multi headed beast and sneaks around in your body in disguise which makes it really hard to diagnose. It can be caused by a whole range of things from a viral infection to emotional trauma. most people never are able to identify the exact cause. But it doesn't really matter.
you can email me if you want to talk about it more.
then, have you considered Ehlers Danlos syndrome? it's worth checking out. Another thing that wears a lot of disguises.
have you had an ANA test done? (anti nuclear antibody test) Great idea to get it checked as a baseline - there's obviously SOMETHING WRONG and it's very complex down to the cellular level. Your mitochondria are not well.
Fibromyalgia is probably a given, and should be assumed.
if you want to start deepening your understanding of the nervous system as well as physiology and nutrition I can't recommend highly enough the podcasts and YouTube videos by Dr Andrew Huberman and Dr Rhonda Patrick.
thanks for your bravery on behalf of all chronically unwell people who deal with mystery, illness and "invisible" illness.
Jeanne van den Hurk
Hi, Jeanne. Thanks for your kind efforts. It’s not "annoying" to get helpful suggestions. 🙂 But it is mostly just futile: it’s just about impossible at this point to suggest anything I haven't already considered to some degree. If something didn't make it into my diagnostic theories post, there's probably a good reason for it!
https://tryeverything.substack.com/p/all-the-diagnoses
I am so sorry you’re going through this. I get the line about it not inviting the same response as, I have MS. As someone who also has had chronic pain and lots of weird symptoms, I feel badly that I am sometimes jealous of my brother who has Parkinson’s. People always say he’s inspiring and a hero! I hope you keep writing despite your self/consciousness because I feel less alone.