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.
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!)
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.
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.
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.
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).
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!
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!
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.
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!)
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.
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.
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.
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).
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!
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!
Oh, I will definitely subscribe to this!
Best of luck Paul, you can do it! Tell this illness to go fuck itself!