All the diagnoses
What the hell is wrong with me anyway?
My Project Try Everything is supposed to take a year or two. At the rate I’m going, it’s going to be seven. I started on April 1, and four months have already churned by while I have:
Summarized my current symptoms … and only summarized. It’s freaky how much I left out.
Started with one easy, obvious-for-me treatment experiment: breathing exercises. Thus far pleasant but unremarkable.
I was supposed to review all my diagnostic theories by no later than June, the better to prioritize all my treatment options. But here we are in high summer, and I have yet to write one single word about what I think might be wrong with me.
So I’m way behind schedule. Shocker!
I might blow this. “Failure is always an option.”
“Have you considered…?” Yes! Whatever it is, I have considered it!
About 80% of the comments I’ve gotten on this project so far have been diagnostic suggestions. I do not resent this. I know good people, so almost all of the suggestions have been much higher quality than: “Have you considered the possibility that you’re being poisoned by 5G radiation?” But I did get one of those by email.
But none of the saner suggestions have actually been news to me.
Health info wrangling is my whole thing, and there’s 50% overlap (or more) between my personal challenge and my full-time work for PainScience.com. So, yeah, I have considered [whatever you suggested], to some degree, I promise — usually for years.
Here is everything I have considered the most…
Summary of my major diagnostic candidates
Fibromyalgia. The shoe fits, but also so what? It doesn’t explain anything. I will explain the lack of explanation below.
Post-viral syndrome, because it’s all so much like Long COVID, because it all started after a bad flu, and half the people I know with chronic illness have a similar story.
Craniocervical junction trouble, especially pseudo-eagle syndrome, because of my history of trauma to a tonsil, adjacent to the jugular foramen — and the symptoms fit.
Stress-induced physiological trauma is my least favourite theory that I cannot kill. It is plausible, thanks to my exotic 2015 stresses.
Narcolepsy, which isn’t what you think it is. The key point is that I’ve been severely sleep deprived my whole life and that is definitely not good.
Chronic tonsillitis. My tonsil seems quite effed up, and chronic infection might be the simplest explanation for my troubles. This diagnosis is the most right-under-my-nose. Technically behind it.
And now each of those in moderate detail…
“Fibromyalgia” isn’t really a diagnosis
Both fibromyalgia (FM) and chronic fatigue syndrome (CFS) describe but do not explain most cases of unexplained chronic pain and/or malaise. They are syndromes — distinctive symptom patterns — with many possible explanations. For more information, see my fibromyalgia guide.
The fibromyalgia shoe fits me like a glove, and it’s not a squishy “diagnosis of exclusion” — there are specific criteria for inclusion these days, and I got ’em. But I need to know why the shoe fits like a glove, not that it does.
Myalgic encephalomyelitis (ME)? ME is more specific: a pattern of obscure but objective signs of pathology identified in people with the most severe FM/CFS symptoms (crippling in many cases). But we still don’t know how people get into that state, and there are probably multiple paths to it, and not everyone with these symptoms has the signs of ME. (I don’t know if I do, and don’t know if I can even find out. That's on my to-do list.)
It’s reasonable to stick any of these three labels on me. But classifying misery doesn’t explain it, help fix it … or even get me taken more seriously by most doctors. But here’s one possible cause of fibromyalgia that might…
Long COVID is now the best-known condition that most sounds like my own story. Long COVID is probably just the most dramatic example of a phenomenon that has been well-documented but medically neglected: post-viral syndrome (PVS), which is most simply explained as immune system jiggery pokery in the aftermath of an infection (although there are other hypothetical mechanisms).
Almost all of my problems got to raging away in the aftermath of a particularly severe upper respiratory infection in the spring of 2015, and everything I’ve experienced since is quite PVS-y. So it’s on the top of my list.
Which is too bad! Because there’s probably nothing to be done about it. (But that’s going to apply to MOST of the possibilities here.)
Craniocervical junction (CCJ)-related conditions, especially pseudo-Eagle syndrome
This is the weird one.
Anything that bothers the upper cervical spine and/or brain stem and/or jugular foramen has the potential to cause complex and systemic symptoms. There are several ways this can happen, and several ways that it can drive symptoms. For instance, “dysautonomia” is one major mechanism for mayhem — glitchy regulation of visceral physiology.
And get a load of this: there is a speculative but plausible link between viral infections and the onset of CCJ conditions! That combines two of my most plausible hypotheses. That said, that specific mechanism is less likely in my case, and meanwhile there's another cause of CCJ trouble that fits my history better…
I had extreme irritation of a tonsil in 2015, which is immediately adjacent to the jugular foramen. Swelling and inflammation around this anatomical porthole causes several distinctive symptoms — and I have had basically all of them. That’s Pseudo-Eagle syndrome, and it’s probably my single best specific “story” of what happened to me.
Speaking of my stupid tonsil…
Another weird one! Bear with me here.
I have a tonsil that got into some weird, bad trouble in 2015 — apparently a rare painful tonsil stone — and although I ejected that fucker and felt way better, that stupid tonsil has been yo-yoing between “not great” and “kinda shitty” ever since.
Specifically, I suffer from routine flare-ups of tonsillitis. So I am an obvious candidate for tonsillectomy, but the procedure spooks me: recovery is notoriously unpleasant, and I’m concerned about traumatizing the area even further. (Furthermore, unsurprisingly, both of the ENTs I’ve consulted about it over the years were really dismissive and basically just refused to even consider it, on general principles.)
I am aware of many anecdotal reports from people who suffered both chronic tonsillitis and malaise… and when they finally got the tonsil out, they just felt way better. Why would that be? Can a chronic/recurrent tonsil infection constantly provoke the immune system a little? Probably, yes. Maybe I feel a little bit sick most of the time because I am a little bit “sick” (infected) most of the time.
The main problem with this is that my symptoms don’t really correspond to my episodes of stronger tonsillitis — I think. It’s all so complicated and messy that I am not entirely sure, and this is a very good example of the potential value of the rigorous logging.
“Burnout” and stress
I hate this 🤬 diagnosis and I think it’s probably wrong. But I can't really get rid of it either. It must be reckoned with.
I’m not talking about an “all in your head” thing. I reject a diagnosis of psychological factors driving current symptoms: anxiety disorder and somatization, AKA conversion disorder, AKA functional neurological disorder.
I’m talking about being damaged by stress, knocked out of homeostasis like a baseball hit out of the stadium, unable to regain my biological balance. There’s not really any compelling evidence that typical stresses can do this much or this kind of damage to a person.
A life of workaholism and assorted dramas definitely just doesn’t seem like enough stress.
But I cannot eliminate the hypothesis… and I did survive some truly extreme and surreal “artificial” stress caused by accidental withdrawal from benzodiazepines in 2015. That was like being tortured. And that experience overlapped with my horrifying tonsil experience. And it was right on the heels of that horrible flu. The “stress” in this case may have been physiological and psychological stress.
Maybe the scary pressure cooker of 2015 did wreck me. (And then the workaholism might have become relevant — by making it much harder to recover from that damage.)
Speaking of physiological stress, there’s another long-term sneaky source of that in my life…
Narcolepsy (not what you think it is)
Hi, my name is Paul, and I’m a narcoleptic … which doesn’t mean what most of you think it means. Mostly it just means I’m a champion insomniac.
Narcolepsy not just about falling asleep at awkward moments. It is a disease of sleep regulation caused by damage to a very specific population of brain cells. (This is usually thanks to collateral damage from fighting an infection, which makes it yet another flavour of post-viral syndrome! Creepy, innit? Turns out infections can be quite dangerous in non-obvious ways!)
Narcoleptics have just as much trouble staying asleep as staying awake. The disease can be relatively mild (it depends on how many of those brain cells were killed), and many narcoleptics never have the classic nap-attack symptom, and are never diagnosed.
Chronic sleep deprivation is a Big Deal. I have had several periods of my life where I slept as little as 2-3 hours per night for weeks at a time. It would be kinda surprising if I was not damaged by that.
Something I haven’t had a chance to post about here yet is that my health problems actually predate 2015 — they were just a lot more subtle. There is a substantial “pre-history” to my stupid story, and this is a very important piece of the puzzle, because it means that whatever’s wrong with me cannot have been completely new in that year. This is why I think of 2015 not as the true beginning of my troubles, but as The Great Worsening.
I think it’s plausible that I had already been in trouble from severe chronic sleep deprivation for most of my life… and then my system was hit with multiple additional severe physiological stresses in 2015, making a bad situation much worse, possibly in multiple ways.
All/some of the above?
Accidents like plane crashes almost always involve more than thing going wrong. I suspect this is also often true of unexplained chronic pain/illness: never just one thing, but a collision of a couple things that then leads to a vicious cycle of physiological complications, all making each other worse. How do you “diagnose” a mess like that? It may be impossible in principle.
Many of the diagnoses that people with chronic pain/illness get are probably perfect examples of the blind-men-and-the-elephant metaphor. Someone has “identified” part of the beast for them … and never wondered what else might be there.
And so much more!
So, those are all the major candidates and most relevant concepts.
There are many more that are somewhat plausible and definitely possible. That list has a very long tail. It’s rather frightening how many more non-ridiculous diagnoses there are. For instance, many diseases have a long early phase of murky unpleasantness, effectively impossible to diagnose without a stroke of luck … or until they get worse. If this is the case, most of this project is futile.
But some things can be checked relatively easily, either with the right medical tests, or with home testing. A few are even easy to check out. Want to know if you have celiac disease? Eat a couple loaves of bread!
Such experiments are part of the point of Project Try Everything. One of my major goals is to prioritize them by how good a fit they are and how easy it is to check them. I will share the results of that process in another post soon.