I posted a long message and it did not post. May sound crazy or maybe you have done part way. As you cannot do full if still drinking. If you can surrender to at least for a period of no alcohol you may have a miracle.
100% carnivore or lion diet. Some people good to listen to dr ken berry, dr andrew chaffee, elizabeth bright, mikhaila peterson sick since baby, now no longer. A good long time friend that suffered her whole life w debilitating symptoms now feels better than ever after trying 'everything'. My life has been changed. Hope sedning this works. You can find me on fb if you want to connect. Lots of love and compassion, kate unger
is a lot like an alternate diagnosis list. It’s from the last couple of years when it became clear that the existing specialists were about to be overwhelmed by orders of magnitude.
Handy to print at and point to when asking a doctor for a test.
Treatment is don’t make it worse and manage the symptoms and treat all comorbidities to the maximum extent possible (because nothing else works).
Absent are a lot of half-assed things you would probably object to although this is partially because it is the *consensus* recommendations. Some doctors on the list have their own avenues they are pursuing.
I had this movement neurologist who kept sending me for tests and then *afterwards* would say things like “there’s no sign of X so we don’t suspect MS…”.
Naturally very appreciative of this doc. She showed me what she called a super-charged webmd they used at hospital for diagnosis. Considering it, she concluded “I think we need a real endocrinologist” (who decided I didn’t have pheochromocytoma.
That I was halfway hoping for the tumor is indicative of how much I did not want ME/CFS. (The pheochromocytoma Facebook group has pinned obituaries for former members. Probably I did not really want the pheo).
you didn't get the tonsillectomy did you? I'll check after writing this comment...
I feel compelled to share my story, not sure if it's really of any use but here we go:
I had VERY similar symptoms plus a history of head trauma, enflamed tonsils, sleep deprivation, and celiac disease (which btw as you probably know cannot be tested for by eating a loaf of bread; symptoms aren't always immediate-onset and some people have ). I got a tonsillectomy ~2yrs ago. the pain never resolved.
so I went down the pseudo-Eagle's route and got neurologically poisoned (or something like that?) by IV contrast in my jugular veins/arteries. an MRI had picked up JV stenosis and I had a diagnostic procedure done for that. it basically gave me moderate brain damage for half a year+. things are a lot better in that regard now but have not returned to normal.
I think I have some sort of predisposition for autoimmune stuff/inflammation coupled with physical trauma and lots of joint instability. so head traumas = mega CCJ instability = chronic muscle tightness = pain = muscle bracing = pain = muscle bracing = pain = bracing etc.
my current strategy is to pursue a career that allows me to be constantly moving/stretching/be surrounded by massage therapists/be super mindful of my movement patterns and consciously relax my muscles constantly. lifestyle changes and painkillers are the only things that have given me relief so far; docs just get really confused and angry and usually leave me worse off than when I started.
it sucks to hear another person is suffering from this strangeness but also sort of comforting. thanks for sharing your story.
At a high level, it seems my issue was essentially a spinal cord that was a bit too short for the rest of my anatomy. This left the bottom of my brain constantly compressed against the back of my skull. (I did receive a diagnosis: "Type 1 Chiari Malformation". However, this was luck after I happened to get an MRI.) I believe this was normal anatomical variation which was exacerbated by the inflammatory effects of COVID.
Anyway, I got a simple surgery to snip the tendon at the base of the spinal cord and my symptoms got dramatically better.
Lots more details at my reddit userpage /u/ChiariSafari including links to studies and technical details. Happy to do a video call if you're interested! Thanks again for all your work with PainScience.
(Also if you want more random tips like this, I suggest you include contact info in your blog's description!)
Hey Joe. That's great news about your experience! I look forward to reading about it. I am very familiar with Chiari malformation as a cause of widespread malaise and pain — it’s on my top-10 list of fascinating causes of bio-fuckery, and in fact a similar kind of issue is on my own shortlist of possible diagnoses. There are several ways to irritate the upper spinal cord and cranial nerves, with complex consequences, and this may be my story too.
"saved my career many years ago" ⁉️ Well, wow! So, have you donated? 😄 I feel like I might have earned it!
I didn't realize you have a donate page! I have no income right now but maybe some time in the future.
Thanks for taking me seriously! I've been trying to get the word out about my experience because so many people are suffering from Long COVID nowadays, but I don't have a following on social media like you, and the one research initiative I reached out to did not respond. The fact that you have a big platform gives me hope.
Some more notes about Chiari Malformation below. I expect you probably know most of what I wrote, but I'm erring on the side of including more just in case.
* You mention irritation of upper spinal cord and cranial nerves. I think that can be important, but I believe the key issue in my case was compression of the cerebellar tonsils due to being pulled down into an area of the skull where there wasn't enough room, and resulting increase in cerebrospinal fluid pressure (less room for the fluid to flow around the brain). From what I understand, this is the standard explanation for what's going on with Chiari. However, Chiari symptoms can be quite diverse, and I find it quite plausible that e.g. your spinal cord is stretched in a way that causes some nerves to malfunction.
* When I had Chiari, I found exercise quite unpleasant, and it felt counterproductive to my illness. I think there were 2 factors at play there: (1) Exercise, especially lifting weights, has a tendency to increase CSF (cerebrospinal fluid) pressure. That makes compression worse. It's like sticking your fingers in a hose and then turning the hose on full blast. (2) Many forms of exercise, such as running or jumping rope, involve impacts against the ground. Hitting the ground jostles things around and causes injury. Like a delivery guy who tosses a package with a fragile item inside that has no internal packaging protection.
* Due to these factors, I find the best form of exercise is to ride a bike, either around the neighborhood or using a static exercise bike. However I only started doing this after my surgery -- prior to my surgery, I was avoiding exercise altogether, and I think that was the right move in retrospect.
* My experience of Chiari was *strongly* associated with trigger points in the back of my head and the back of my neck, right around where the compression was occurring. I could release them with some effort, and that helped for a while, but the Chiari caused them to keep coming back.
* If you have Chiari like me, you'll want to be careful applying pressure to that region, as in massage, because you'll be making the compression worse! You have to be really careful because your brainstem is in that region, which is responsible for critical functions like keeping your heart going, so you could literally kill yourself. (Chiari can sometimes be deadly!)
* The best solution I found for trigger points in my back of head/neck region was to lie on an acupressure pillow every night while falling asleep. This costs negative time (it helps me fall asleep faster). I'm a huge fan of acupressure because a pillow costs less than a single dry needling/acupuncture session, and is also safer because the pokey plastic flowers don't penetrate the skin. The shape of the pillow matters a lot. I've found the standard dome-shaped pillows which are all over Amazon to be pretty bad -- they stretch out the region and make the compression worse. I would recommend a pillow like this https://www.amazon.com/Kanj%C5%8D-Kanjo-Acupressure-Cushion-Onyx/dp/B072PR21XR/ or this https://www.amazon.com/Acupressure-Massage-Stiffness-Headache-Multiple/dp/B09NSTQPJ7/
* To make the acupressure pillow work better, I shave the back of my head regularly. This increases direct skin contact and the intensity of the release sensation. Sometimes I'll gently use my hands to shove my head into the pillow and roll it around, similar to what an acupuncturist does to stimulate needles. As I'm falling asleep, I'll sometimes get a sudden jolt of neurological something-or-other which wakes me up. At that point, I toss the acupressure pillow aside and lie on my side on an ordinary bed pillow. At one point I was worried what was going on with the jolt, but it's been going on for years for me now, and I've mostly stopped worrying.
* So, I strongly suggest you try buying an acupressure pillow ASAP as a quick small experiment. My history of solving chronic medical problems (I've solved a number by now!) has taught me that you are best off dipping your toe in a wide variety of solutions, because the best solutions will work 10x or 100x better than mediocre solutions. Exercise is a solution that requires a lot of willpower, might be counterproductive, and you've probably already done enough of it that you can rule it out as one of those 10x or 100x "jackpot" solutions. Buying a pillow is cheaper than getting a diagnostic MRI, and could help with your sleep even if you don't have Chiari.
* There are other safe ways to treat trigger points in that area, such as resting the back of your head on a warm microwaveable wrap.
* Another easy (but more expensive) thing to try is buy a kneeling chair like this and see if sitting on it helps with your fatigue: https://www.amazon.com/gp/product/B08CH1CGB1/ This was a jackpot for me -- the sitting posture from that chair reduces the tension on my spine, opens up my cerebellar tonsil area to allow for more CSF flow, and greatly increases my mental endurance. (On the other hand, when I try to *increase* the tension on my spine, e.g. by making an effort to stand up straight, I get a fairly immediate and noticeable worsening of my symptoms. I don't recommend you try experiments of this kind -- when my symptoms were at my worst, doing this kind of thing made me feel like I was gonna die -- I could tell my brainstem was being compressed in a way that was super bad. I'm only mentioning it as a hypothesis to test against your intuitions about your body and symptom history.)
* There is this thing called "Chiari type 0", which is basically when you have Chiari symptoms but Chiari isn't apparent on an MRI. As you might imagine, this is a controversial diagnosis. But I found it more plausible when I realized that the brain is actually a 3d structure, and any 2d scan slice doesn't fully capture the degree of CSF obstruction. I think it was this talk that made me realize that: https://www.youtube.com/watch?v=xQjToJy4LO8
Anyways you probably knew most of that. Happy to answer any questions you *do* have, or my reddit userpage has more details.
Also this, saw on medical Twitter today: Stanford is getting ready to do an RCT of a drug that seems promising for Long Covid. People were speculating whether drug is low-dose naltrexone, which according to anecdotal reports helps Chronic Fatigue: https://casereports.bmj.com/content/13/1/e232502
Here's one more idea. Not at all sure this one's good, or that it applies to your situation -- still, if you're going to try everything, it's maybe worth havingh on the list. In it's favor is that it comes from a family I know where everybody is smart, science-minded and skeptical. OK, here's what they say gives them a rapid recovery from colds and flu: Induce a fever, by taking a long hot bath then getting into a bed piled with blankets. Stay there til morning. I'm not sure this is even *safe,* much less effective -- still, it's always stuck in my mind as a thing worth trying, because the people in this family swear by it.
It's got "long shot" written all over it for my situation, I think… but doubt it’s particularly dangerous to try, either. I’ve basically done that just for comfort on some days. 😜 But I could dial it up a notch or two and see what happens.
Damn! I had something years ago that was almost exactly the same as what you are describing. You are absolutely right about "fatigue" being the wrong word. The best word I've found for the feeling I was stuck with for 3 years is "malaise." It's feeling *sick*. Malaise is often accompanied by fever, fatigue, headaches, nausea and whatnot, but it is not any of those things -- it's just a deeply unpleasant sick feeling, and you can have it in the absence of all the trimmings. I was lucky -- my syndrome just faded away after about 3 years.
I totally get it about how hard it is to come up with plans to try, and then implement them. Of course, you have excellent reasons to do that -- but you also feel crappy and low-energy, and the plans may look as bleak and gray as everything else. I think this blog is an excellent way to hold yourself accountable and get support.
OK, so I have 3 ideas of things worth trying. You may have tried some of them already.
-Find out what kind of flu was dominant when you had the illness that kicked off this syndrome, and get vaccinated for it. Maybe even get the extra-strength version for seniors. I'm suggesting this because a fair number of people with Long Covid felt better after getting a covid vaccination. This is analogous. Of course, it's also risky -- what if it makes you worse? Maybe don't try this one before trying safer options.
-Take a course of whatever antiviral med works best against flu or whatever you thought you had. Same logic as above: Some people with Long Covid say they were helped by Paxlovid. And if you're going to try this one, do it intensely -- like do 2 courses back-to-back.
-Both of the above require the cooperation of doctors. If you can't find someone who is willing to try this stuff, consider paying for a "boutique" doctor for a year. You'll have to ask around to find out which of the boutique docs are willing to prescribe off-label in the ways I'm suggesting.
-Sleep as much as you can. Use blackout curtains, earplugs, special mattresses, weighted blankets --anything that helps you sleep better. Do not use an alarm clock. Sleep until you wake up naturally. My reason for suggesting this is that I have had some success with using prolonged sleep to turn the corner on colds and the flu. Sometimes when I'm sick I do my best to sleep 12 or 14 hours, maybe using a dose of benedryl halfway through the night to prolong my sleep, I often wake up feeling mostly recovered. I'm not *sure* the mega-sleep theory is valid -- maybe 8 hours on those nights would have worked just as well. Also, I have always been very intolerant of sleep deprivation. If I'm a couple hours short on sleep, I really feel a LOT less good, so maybe sleep is more important for keeping me in good shape than it is for most people. Still, long luxurious sleep seems worth a try for you, and at least it's not a fatiguing treatment! Oh and about the alcohol -- it damages sleep architecture. So do benzos. I'm sure you know that. So what you need to get yourself is a series of long "architecturally sound" sleeps.
"I was lucky" Holy wow, no kidding! Happy for you and super jealous! I know this happens for some people, but obviously I’m losing hope after 7 years.
Interesting idea about the vaccinations and antivirals. Incredibly, that is an idea I actually had NOT thought of myself yet… and that hardly ever happens anymore. 🙂
I've never had SARS, and I felt significantly better from my MECFS (etc) illness following the bivalent booster. I suspect it gave my immune system something to do besides chew on me.
This is coming from an almost-recovered chronic pain sufferer: once I opened up to the possibility that all my symptoms were mindbody in nature, they were coming from the brain and nothing else, I was actually perfectly healthy but my brain is being overprotective, I saw great improvement and now I am 85% recovered and have my life back. Mindbody symptoms are more likely to occur for perfectionistic, ambitious, hard-working, conscentious, do-good people-pleasing types of people. If interested, look up TMS (tension myositis syndrome), described by John Sarno in books like The Mindbody Prescription, or other, more scientifically justified books like Unlearn Your Pain by Howard Schubiner or The Way Out by Alan Gordon.
I'm sorry the mindbody methods didn't work for you. I hope the hEDS diagnosis gives you at least some certainty about your situation and some options to deal with it, I wish you all the best.
Thanks for the info, I could indeed have gone through the Pain Science website myself, have to admit I did not really do that. And Paul, all the best on your journey, I truely hope you find a solution.
Not that I really expect anyone to review everything I’ve written before commenting. 🤣 Because it’s the equivalent of about 20 books. I don’t resent suggestions! Naturally I knew when I started this that people would really, REALLY want to try to help. While most of it is going to be stuff I’ve already thought about, it’s also professionally interesting and useful for me to see the themes in what people recommend and why.
Once you've found something that works for yourself, you're always biased towards that approach, and I definitively recognize that's the case with me (even though I'm a scientist myself so I should be objective haha). Still can't help myself in trying to reach out with my experiences, I try not to force it upon others, only share it if they want to hear it. But sometimes I guess I'm getting ahead of myself.
Along with PVS (post-viral syndrome), there's the very real possibility that some chronic sufferers, like myself, suffer from PTS (post-treatment syndrome). I cannot *prove* that my own chronic condition is the result of a very ill-advised treatment with strong antibiotics and NSAIDs, but I have good reasons to believe it to be true. In both cases the immune system is thrown out of whack. The difference is the cause (nasty virus in one case, nasty medication in the other case).
There are many potential triggers for "immune system fuckery." We really need to understand that state: all the ways that people can get into it, and then (ha!) how we can get out of it.
But of course PVS is only the most promising of several candidate diagnoses for my case. I do think it’s firmly in the lead, but I’m not kidding myself that it’s anything like confirmed. I know it’s quite likely that I will never actually understand what has happened.
That's precisely what's so promising (so to speak) about Long COVID: that it will force scientists to focus more on the immune system in all its complexity and weirdness. And that might have positive impacts for sufferers of other chronic conditions involving the immune system. It's sad that it has taken a pandemic and an untold amount of suffering to get to such a point, but at least it has given us some hope (after decades of neglect). Still, there is a lot of work to be done, so we can't expect any significant results (and associated avenues for treatments) overnight. And there's always a risk that interest in all this might quickly wane if Big Pharma cannot identify potentially lucrative treatments soon enough.
Good luck with all this, Paul. You also once said that you were addicted to work (workaholic). It sounds to me like you've just given yourself MORE work to do. But it doesn't mean that it's a bad idea. It's just… quite brave!
It took me years to make this choice in part because I knew that the price tag would be high, that much would have to be sacrificed even without bothering to publish my exploits — just paying this much attention to the problem is like having another part-time job (and without pay). I kept hoping I could muddle through without making the effort, that the need would evaporate.
I’ve subscribed as one of the many who respects all the work you’ve done to help others, as one of the many who want to be supportive, and as one of the many who want to learn optimal management of post-viral syndromes. Sending you so many good wishes!
Thanks, Linda. It seems a bit unlikely that my mission will get me to "optimal management" for post-viral syndrome, but I like your optimism! PVS is also only one of several theories about what the hell is wrong with me. I think it’s the best one, but… 🤷🏻♂️
I posted a long message and it did not post. May sound crazy or maybe you have done part way. As you cannot do full if still drinking. If you can surrender to at least for a period of no alcohol you may have a miracle.
100% carnivore or lion diet. Some people good to listen to dr ken berry, dr andrew chaffee, elizabeth bright, mikhaila peterson sick since baby, now no longer. A good long time friend that suffered her whole life w debilitating symptoms now feels better than ever after trying 'everything'. My life has been changed. Hope sedning this works. You can find me on fb if you want to connect. Lots of love and compassion, kate unger
Hav e you ever used https://mecfscliniciancoalition.org/?
https://mecfscliniciancoalition.org/wp-content/uploads/2021/05/MECFS-Clinician-Coalition-Testing-Recs-V1.pdf
is a lot like an alternate diagnosis list. It’s from the last couple of years when it became clear that the existing specialists were about to be overwhelmed by orders of magnitude.
Handy to print at and point to when asking a doctor for a test.
Treatment is don’t make it worse and manage the symptoms and treat all comorbidities to the maximum extent possible (because nothing else works).
Absent are a lot of half-assed things you would probably object to although this is partially because it is the *consensus* recommendations. Some doctors on the list have their own avenues they are pursuing.
Maybe I posted this before. It’s a good resource.
I had this movement neurologist who kept sending me for tests and then *afterwards* would say things like “there’s no sign of X so we don’t suspect MS…”.
Naturally very appreciative of this doc. She showed me what she called a super-charged webmd they used at hospital for diagnosis. Considering it, she concluded “I think we need a real endocrinologist” (who decided I didn’t have pheochromocytoma.
That I was halfway hoping for the tumor is indicative of how much I did not want ME/CFS. (The pheochromocytoma Facebook group has pinned obituaries for former members. Probably I did not really want the pheo).
you didn't get the tonsillectomy did you? I'll check after writing this comment...
I feel compelled to share my story, not sure if it's really of any use but here we go:
I had VERY similar symptoms plus a history of head trauma, enflamed tonsils, sleep deprivation, and celiac disease (which btw as you probably know cannot be tested for by eating a loaf of bread; symptoms aren't always immediate-onset and some people have ). I got a tonsillectomy ~2yrs ago. the pain never resolved.
so I went down the pseudo-Eagle's route and got neurologically poisoned (or something like that?) by IV contrast in my jugular veins/arteries. an MRI had picked up JV stenosis and I had a diagnostic procedure done for that. it basically gave me moderate brain damage for half a year+. things are a lot better in that regard now but have not returned to normal.
I think I have some sort of predisposition for autoimmune stuff/inflammation coupled with physical trauma and lots of joint instability. so head traumas = mega CCJ instability = chronic muscle tightness = pain = muscle bracing = pain = muscle bracing = pain = bracing etc.
my current strategy is to pursue a career that allows me to be constantly moving/stretching/be surrounded by massage therapists/be super mindful of my movement patterns and consciously relax my muscles constantly. lifestyle changes and painkillers are the only things that have given me relief so far; docs just get really confused and angry and usually leave me worse off than when I started.
it sucks to hear another person is suffering from this strangeness but also sort of comforting. thanks for sharing your story.
Hi Paul -- I'm a huge fan of your work on PainScience, it saved my career many years ago!
Here's my attempt to return the favor...
In early 2021, I got something very much like Long COVID. It's now mostly cured.
I wrote about my story here: https://www.reddit.com/r/COVID19positive/comments/nuvp62/how_i_beat_long_covid_through_spine_surgery_yes/
At a high level, it seems my issue was essentially a spinal cord that was a bit too short for the rest of my anatomy. This left the bottom of my brain constantly compressed against the back of my skull. (I did receive a diagnosis: "Type 1 Chiari Malformation". However, this was luck after I happened to get an MRI.) I believe this was normal anatomical variation which was exacerbated by the inflammatory effects of COVID.
Anyway, I got a simple surgery to snip the tendon at the base of the spinal cord and my symptoms got dramatically better.
Lots more details at my reddit userpage /u/ChiariSafari including links to studies and technical details. Happy to do a video call if you're interested! Thanks again for all your work with PainScience.
(Also if you want more random tips like this, I suggest you include contact info in your blog's description!)
Hey Joe. That's great news about your experience! I look forward to reading about it. I am very familiar with Chiari malformation as a cause of widespread malaise and pain — it’s on my top-10 list of fascinating causes of bio-fuckery, and in fact a similar kind of issue is on my own shortlist of possible diagnoses. There are several ways to irritate the upper spinal cord and cranial nerves, with complex consequences, and this may be my story too.
"saved my career many years ago" ⁉️ Well, wow! So, have you donated? 😄 I feel like I might have earned it!
https://www.painscience.com/donate
I didn't realize you have a donate page! I have no income right now but maybe some time in the future.
Thanks for taking me seriously! I've been trying to get the word out about my experience because so many people are suffering from Long COVID nowadays, but I don't have a following on social media like you, and the one research initiative I reached out to did not respond. The fact that you have a big platform gives me hope.
Some more notes about Chiari Malformation below. I expect you probably know most of what I wrote, but I'm erring on the side of including more just in case.
* You mention irritation of upper spinal cord and cranial nerves. I think that can be important, but I believe the key issue in my case was compression of the cerebellar tonsils due to being pulled down into an area of the skull where there wasn't enough room, and resulting increase in cerebrospinal fluid pressure (less room for the fluid to flow around the brain). From what I understand, this is the standard explanation for what's going on with Chiari. However, Chiari symptoms can be quite diverse, and I find it quite plausible that e.g. your spinal cord is stretched in a way that causes some nerves to malfunction.
* When I had Chiari, I found exercise quite unpleasant, and it felt counterproductive to my illness. I think there were 2 factors at play there: (1) Exercise, especially lifting weights, has a tendency to increase CSF (cerebrospinal fluid) pressure. That makes compression worse. It's like sticking your fingers in a hose and then turning the hose on full blast. (2) Many forms of exercise, such as running or jumping rope, involve impacts against the ground. Hitting the ground jostles things around and causes injury. Like a delivery guy who tosses a package with a fragile item inside that has no internal packaging protection.
* Due to these factors, I find the best form of exercise is to ride a bike, either around the neighborhood or using a static exercise bike. However I only started doing this after my surgery -- prior to my surgery, I was avoiding exercise altogether, and I think that was the right move in retrospect.
* My experience of Chiari was *strongly* associated with trigger points in the back of my head and the back of my neck, right around where the compression was occurring. I could release them with some effort, and that helped for a while, but the Chiari caused them to keep coming back.
* If you have Chiari like me, you'll want to be careful applying pressure to that region, as in massage, because you'll be making the compression worse! You have to be really careful because your brainstem is in that region, which is responsible for critical functions like keeping your heart going, so you could literally kill yourself. (Chiari can sometimes be deadly!)
* The best solution I found for trigger points in my back of head/neck region was to lie on an acupressure pillow every night while falling asleep. This costs negative time (it helps me fall asleep faster). I'm a huge fan of acupressure because a pillow costs less than a single dry needling/acupuncture session, and is also safer because the pokey plastic flowers don't penetrate the skin. The shape of the pillow matters a lot. I've found the standard dome-shaped pillows which are all over Amazon to be pretty bad -- they stretch out the region and make the compression worse. I would recommend a pillow like this https://www.amazon.com/Kanj%C5%8D-Kanjo-Acupressure-Cushion-Onyx/dp/B072PR21XR/ or this https://www.amazon.com/Acupressure-Massage-Stiffness-Headache-Multiple/dp/B09NSTQPJ7/
* To make the acupressure pillow work better, I shave the back of my head regularly. This increases direct skin contact and the intensity of the release sensation. Sometimes I'll gently use my hands to shove my head into the pillow and roll it around, similar to what an acupuncturist does to stimulate needles. As I'm falling asleep, I'll sometimes get a sudden jolt of neurological something-or-other which wakes me up. At that point, I toss the acupressure pillow aside and lie on my side on an ordinary bed pillow. At one point I was worried what was going on with the jolt, but it's been going on for years for me now, and I've mostly stopped worrying.
* So, I strongly suggest you try buying an acupressure pillow ASAP as a quick small experiment. My history of solving chronic medical problems (I've solved a number by now!) has taught me that you are best off dipping your toe in a wide variety of solutions, because the best solutions will work 10x or 100x better than mediocre solutions. Exercise is a solution that requires a lot of willpower, might be counterproductive, and you've probably already done enough of it that you can rule it out as one of those 10x or 100x "jackpot" solutions. Buying a pillow is cheaper than getting a diagnostic MRI, and could help with your sleep even if you don't have Chiari.
* There are other safe ways to treat trigger points in that area, such as resting the back of your head on a warm microwaveable wrap.
* Another easy (but more expensive) thing to try is buy a kneeling chair like this and see if sitting on it helps with your fatigue: https://www.amazon.com/gp/product/B08CH1CGB1/ This was a jackpot for me -- the sitting posture from that chair reduces the tension on my spine, opens up my cerebellar tonsil area to allow for more CSF flow, and greatly increases my mental endurance. (On the other hand, when I try to *increase* the tension on my spine, e.g. by making an effort to stand up straight, I get a fairly immediate and noticeable worsening of my symptoms. I don't recommend you try experiments of this kind -- when my symptoms were at my worst, doing this kind of thing made me feel like I was gonna die -- I could tell my brainstem was being compressed in a way that was super bad. I'm only mentioning it as a hypothesis to test against your intuitions about your body and symptom history.)
* There is this thing called "Chiari type 0", which is basically when you have Chiari symptoms but Chiari isn't apparent on an MRI. As you might imagine, this is a controversial diagnosis. But I found it more plausible when I realized that the brain is actually a 3d structure, and any 2d scan slice doesn't fully capture the degree of CSF obstruction. I think it was this talk that made me realize that: https://www.youtube.com/watch?v=xQjToJy4LO8
Anyways you probably knew most of that. Happy to answer any questions you *do* have, or my reddit userpage has more details.
Also this, saw on medical Twitter today: Stanford is getting ready to do an RCT of a drug that seems promising for Long Covid. People were speculating whether drug is low-dose naltrexone, which according to anecdotal reports helps Chronic Fatigue: https://casereports.bmj.com/content/13/1/e232502
Here's one more idea. Not at all sure this one's good, or that it applies to your situation -- still, if you're going to try everything, it's maybe worth havingh on the list. In it's favor is that it comes from a family I know where everybody is smart, science-minded and skeptical. OK, here's what they say gives them a rapid recovery from colds and flu: Induce a fever, by taking a long hot bath then getting into a bed piled with blankets. Stay there til morning. I'm not sure this is even *safe,* much less effective -- still, it's always stuck in my mind as a thing worth trying, because the people in this family swear by it.
It's got "long shot" written all over it for my situation, I think… but doubt it’s particularly dangerous to try, either. I’ve basically done that just for comfort on some days. 😜 But I could dial it up a notch or two and see what happens.
Damn! I had something years ago that was almost exactly the same as what you are describing. You are absolutely right about "fatigue" being the wrong word. The best word I've found for the feeling I was stuck with for 3 years is "malaise." It's feeling *sick*. Malaise is often accompanied by fever, fatigue, headaches, nausea and whatnot, but it is not any of those things -- it's just a deeply unpleasant sick feeling, and you can have it in the absence of all the trimmings. I was lucky -- my syndrome just faded away after about 3 years.
I totally get it about how hard it is to come up with plans to try, and then implement them. Of course, you have excellent reasons to do that -- but you also feel crappy and low-energy, and the plans may look as bleak and gray as everything else. I think this blog is an excellent way to hold yourself accountable and get support.
OK, so I have 3 ideas of things worth trying. You may have tried some of them already.
-Find out what kind of flu was dominant when you had the illness that kicked off this syndrome, and get vaccinated for it. Maybe even get the extra-strength version for seniors. I'm suggesting this because a fair number of people with Long Covid felt better after getting a covid vaccination. This is analogous. Of course, it's also risky -- what if it makes you worse? Maybe don't try this one before trying safer options.
-Take a course of whatever antiviral med works best against flu or whatever you thought you had. Same logic as above: Some people with Long Covid say they were helped by Paxlovid. And if you're going to try this one, do it intensely -- like do 2 courses back-to-back.
-Both of the above require the cooperation of doctors. If you can't find someone who is willing to try this stuff, consider paying for a "boutique" doctor for a year. You'll have to ask around to find out which of the boutique docs are willing to prescribe off-label in the ways I'm suggesting.
-Sleep as much as you can. Use blackout curtains, earplugs, special mattresses, weighted blankets --anything that helps you sleep better. Do not use an alarm clock. Sleep until you wake up naturally. My reason for suggesting this is that I have had some success with using prolonged sleep to turn the corner on colds and the flu. Sometimes when I'm sick I do my best to sleep 12 or 14 hours, maybe using a dose of benedryl halfway through the night to prolong my sleep, I often wake up feeling mostly recovered. I'm not *sure* the mega-sleep theory is valid -- maybe 8 hours on those nights would have worked just as well. Also, I have always been very intolerant of sleep deprivation. If I'm a couple hours short on sleep, I really feel a LOT less good, so maybe sleep is more important for keeping me in good shape than it is for most people. Still, long luxurious sleep seems worth a try for you, and at least it's not a fatiguing treatment! Oh and about the alcohol -- it damages sleep architecture. So do benzos. I'm sure you know that. So what you need to get yourself is a series of long "architecturally sound" sleeps.
I'll come back with more ideas as I have them.
"I was lucky" Holy wow, no kidding! Happy for you and super jealous! I know this happens for some people, but obviously I’m losing hope after 7 years.
Interesting idea about the vaccinations and antivirals. Incredibly, that is an idea I actually had NOT thought of myself yet… and that hardly ever happens anymore. 🙂
I've never had SARS, and I felt significantly better from my MECFS (etc) illness following the bivalent booster. I suspect it gave my immune system something to do besides chew on me.
This is coming from an almost-recovered chronic pain sufferer: once I opened up to the possibility that all my symptoms were mindbody in nature, they were coming from the brain and nothing else, I was actually perfectly healthy but my brain is being overprotective, I saw great improvement and now I am 85% recovered and have my life back. Mindbody symptoms are more likely to occur for perfectionistic, ambitious, hard-working, conscentious, do-good people-pleasing types of people. If interested, look up TMS (tension myositis syndrome), described by John Sarno in books like The Mindbody Prescription, or other, more scientifically justified books like Unlearn Your Pain by Howard Schubiner or The Way Out by Alan Gordon.
That's amazing! I devoted myself to these methods but it failed to resolve my chronic pain, which has now been diagnosed as hEDS.
I'm sorry the mindbody methods didn't work for you. I hope the hEDS diagnosis gives you at least some certainty about your situation and some options to deal with it, I wish you all the best.
Good intentions...but I think he's there already https://www.painscience.com/articles/sarno-review.php
https://www.painscience.com/articles/placebo-power-hype.php
https://www.painscience.com/blog/that-pain-reprocessing-therapy-study-is-way-too-good-to-be-true.html
I suppose it's a risk that goes with the territory..
But like you, having recovered, I'm desperate to share.
Thanks for the info, I could indeed have gone through the Pain Science website myself, have to admit I did not really do that. And Paul, all the best on your journey, I truely hope you find a solution.
Not that I really expect anyone to review everything I’ve written before commenting. 🤣 Because it’s the equivalent of about 20 books. I don’t resent suggestions! Naturally I knew when I started this that people would really, REALLY want to try to help. While most of it is going to be stuff I’ve already thought about, it’s also professionally interesting and useful for me to see the themes in what people recommend and why.
Once you've found something that works for yourself, you're always biased towards that approach, and I definitively recognize that's the case with me (even though I'm a scientist myself so I should be objective haha). Still can't help myself in trying to reach out with my experiences, I try not to force it upon others, only share it if they want to hear it. But sometimes I guess I'm getting ahead of myself.
Really, no worries, I do understand, and I really do not resent people trying to be helpful. 🙂
Thanks! Clearly you are quite familiar with my work. 😉 And I like how you kept that response classy and nice, too. 👍🏻
Along with PVS (post-viral syndrome), there's the very real possibility that some chronic sufferers, like myself, suffer from PTS (post-treatment syndrome). I cannot *prove* that my own chronic condition is the result of a very ill-advised treatment with strong antibiotics and NSAIDs, but I have good reasons to believe it to be true. In both cases the immune system is thrown out of whack. The difference is the cause (nasty virus in one case, nasty medication in the other case).
There are many potential triggers for "immune system fuckery." We really need to understand that state: all the ways that people can get into it, and then (ha!) how we can get out of it.
But of course PVS is only the most promising of several candidate diagnoses for my case. I do think it’s firmly in the lead, but I’m not kidding myself that it’s anything like confirmed. I know it’s quite likely that I will never actually understand what has happened.
That's precisely what's so promising (so to speak) about Long COVID: that it will force scientists to focus more on the immune system in all its complexity and weirdness. And that might have positive impacts for sufferers of other chronic conditions involving the immune system. It's sad that it has taken a pandemic and an untold amount of suffering to get to such a point, but at least it has given us some hope (after decades of neglect). Still, there is a lot of work to be done, so we can't expect any significant results (and associated avenues for treatments) overnight. And there's always a risk that interest in all this might quickly wane if Big Pharma cannot identify potentially lucrative treatments soon enough.
Good luck with all this, Paul. You also once said that you were addicted to work (workaholic). It sounds to me like you've just given yourself MORE work to do. But it doesn't mean that it's a bad idea. It's just… quite brave!
It took me years to make this choice in part because I knew that the price tag would be high, that much would have to be sacrificed even without bothering to publish my exploits — just paying this much attention to the problem is like having another part-time job (and without pay). I kept hoping I could muddle through without making the effort, that the need would evaporate.
I’ve subscribed as one of the many who respects all the work you’ve done to help others, as one of the many who want to be supportive, and as one of the many who want to learn optimal management of post-viral syndromes. Sending you so many good wishes!
Thanks, Linda. It seems a bit unlikely that my mission will get me to "optimal management" for post-viral syndrome, but I like your optimism! PVS is also only one of several theories about what the hell is wrong with me. I think it’s the best one, but… 🤷🏻♂️
Oh, I will definitely subscribe to this!
Glad to you have you on the journey with me, Dale.
Best of luck Paul, you can do it! Tell this illness to go fuck itself!
Thanks, Reeners. Using harsh language on it hasn't worked so far, but I’m going to keep it up anyway. 🙂