The worst symptoms in more lurid detail
Too much information? Maybe!
A month ago, I summarized my symptoms… which took a thousand words, but barely scratched the surface. To be thorough, I am going to need another thousand words about…
the exercise intolerance
the amazing aches and pains variety show!
the cramping and twitching
the one thing that’s changed: malaisier “malaise"
I will try to do this with a sense of humour, for your sake and mine.
Me me me? 😳
Project Try Everything is very personal. It’s for me, to help me do a hard thing … and only secondarily for you, an audience that has been invited to tag along for the ride, to look over my shoulder.
And so some posts could seem a bit boring and self-obsessed, and I’m not exactly thrilled about that. In fact, exposing myself like this freaks me out a bit. I am private introvert by nature, and it feels a little harrowing to talk about me me me in a way that often feels like a long confession of weakness.
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 “good” one, not one that is known. “Something’s wrong with me” just doesn’t have the same power to inspired sympathy and empathy as “I have multiple sclerosis.”
But I’m going to “feel the fear and do it anyway.”
The exercise intolerance: nearly impossible to explain (but that won’t stop me from trying)
Exercise makes me much, much more sore than it should. Many friends have reacted to this by saying things like, “I know, right?! I can’t believe how sore I get these days!” Nope, sorry my friends, but you do not know.
People think they know what I’m talking about because they’ve been sore too. But this is just in another league. And it’s not limited to pain.
In addition to the high pain levels, it comes with a sickly fragility, a feverish vibe — but never an actual fever, of course, that would be too clarifying! (What I wouldn’t give for a nice clear objective sign like 38˚C on a thermometer.) The pain and the malaise together are exactly like the fluey aches in the first couple days of an illness — which I always get a nasty dose of, but I’ve learned that not everyone knows this feeling.
Exactly how much and what kind of exercise it takes to trigger this nonsense is quite variable:
10-15 minutes of moderate weight lifting will cause a little of it on most days.
60-90 minutes of walking will almost always do it, and “long" (>2 hours) hikes are deadly. This is basically what killed my hiking hobby.
Running is a puzzle, because it doesn’t triggers it… maybe because I hit other barriers first.
But the threshold shifts around. I remember a phase in 2016 where I couldn't walk more than 20 minutes without real trouble, and after many an “easy” half hour evening walk with my wife I would get home and collapse in bed for an hour. That was a scary time.
And some days there is no threshold, and I just wake up feeling like this — no provocation at all. Speaking of the general malaise…
The one thing that’s changed: malaisier “malaise"
Nothing much has changed in the last seven years. It’s mostly been the same hardships all along. But there is one exception: I’ve gotten “sicklier” feeling since 2020. That same “feverish” feeling I’d known from exercise intolerance since 2015 started to spread. It started with nasty episodes of acute illness, and then became less severe and more common, eventually blending into the exercise intolerance symptom … but triggered by life itself, I guess.
Feeling cruddy is the new normal. Prior to 2020 I mostly didn’t think of this as chronic illness, mostly just chronic pain. But it’s definitely chronic illness now.
The freaky acute illness episodes of 2020
It started dramatically. In May of 2020, as the pandemic shit was getting real, I got a severe and bizarre illness which was not obviously COVID — it wasn’t remotely like a cold — but also hard to make sense of any other way (and tests weren’t quite available yet).
But it also wasn’t my usual bullshit: many of the symptoms were entirely new to me, things I had never felt before (ever).
It resolved over a month, following the pattern of recovery I’d expect from an infection, and slowly my usual bullshit took centre stage again. I chalked it up to a bizarre infection, possibly COVID, or maybe an ominous development in my health problems.
And then it happened again. Many months later, in December. Very severe, but not quite as severe. Precisely the same symptoms, just not quite as severe. As if the original episode hadn’t been puzzling enough.
There were two more distinct episodes in early 2021, milder and each time, starting to blend into the background. Those bizarre symptoms — so novel originally — slowly started to blend in with my older ones, adding a layer of stranger and more intense illness to my generally poor health. Episodes of malaise are now more intense, more frequent, and more arbitrary.
To this day, I just have no idea what happened to my body in the spring of 2020.
The cramping and twitching
Nothing says “there’s something really wrong with this body” quite like muscles that randomly contract when no one asked them too.
I have many muscle tremors and cramps, up to several per day.
As with the pains, the muscle misbehaviour is all over the place: highly variable power, frequency, amplitude, duration, and rhythm. Some buzz like an angry hornet, so fast it’s more like a vibration than a twitch. Others flutter weakly or stutter, like typical blepharospasm (eyelid twitching). Some kick powerfully once or twice and never happen again.
The “cramps” just seem like the slowest of the twitches.
Most come and go within minutes. A few last for hours. Every few weeks I get one that hounds me for days.
But imagine if you knew that any of them could turn into a nightmare that lasts for months. That actually happened. It’s not an abstract fear. The Great Twitch of ’17 was a powerful yanking contraction with the rhythm of a yapping dog, and it lasted for most of the year.
Yank yank! Yank yank yank! Yank! Yankyankyankyankyank!
It just went away one day. I probably cried with relief. I don’t remember. There’s been so much.
Although most of the cramps are painless, often there seems to be some overlap, and I often suspect that many of my pains are cramps. Perhaps the cramping is how many of the pains work.
The amazing aches and pains variety show
The variety of my aches and pains is kaleidoscopic, surreal, giving an overwhelming impression that the pain is glitchy, like there are a lot of loose wires sparking and smoking. Most of it never makes a lick of sense, coming and going at random, often without the slightest apparent provocation.
The variety show includes several regular acts, which I know will be there almost every day.
There are also many special guest stars that come out of nowhere, baffle and terrorize me for a couple days or a month, and then disappear never to be felt again (or not for a very long time).
And then there are scores of recognizable but erratically recurring pains. Some I’ve only only felt a few times over the years — but I always know them. “Oh, it’s the fucking sternum thing again,” I’ll think, or “Oh no, it’s that bastard of an elbow throb! What’s it been, two years? Hello, darkness, my old friend.”
And then there are the pain pings.
The Pain Pings are brief flares and pulses of pain, an instant or a few moments, rarely repeated. They have the average intensity of a minor toe stub, but occur while I am sitting perfectly still on the couch watching TV, or falling asleep, or eating dinner, or doing laundry, or walking. Sometimes they are milder and just make me wince and sigh, but sometimes I gasp or grunt, and once in a while they force me to my knee for 20 seconds of blinding agony … that never recurs.
The pain-ping rate goes way up in rough patches, peaking at many per hour, but recedes to almost nothing in good periods: just a few per day.
It is exhausting to be constantly harassed like this.
Three examples of erratic pains (and “too much information”)
To try to give you a sense of the diversity of my pains, here are three good representative examples:
Throbbing where-the-sun-don’t-shine pain with precisely the same epicentre every time it happens. This literal asshole of a symptom lasts for 30-90 minutes, causing nausea and a powerful but unproductive urge to poop. About a dozen occurrences since 2018, with gaps as long as several months. Fun.
Right-side trigeminal neuralgia: mild to moderate zappy pain in the side of the face, jaw, and teeth. TN is notoriously savage, and mine does not live up to that reputation: it’s more like an unpleasantly hot wire than a shock. But it’s still super unpleasant! And has been occurring erratically since 2015, at least several doses per month.
An extreme stabbing pain in exactly the same spot on the front of my right shoulder, which usually lasts between 3 and 6 seconds. “Knocks” me down every time. Occurs a few times per year for as long as I can remember. Not exaggerating when I say that the intensity is exactly what I’d expect from actually being stabbed with a letter opener. If it lasted more than 10 seconds, I’d probably pass out.
Fun bonus fact about #3 there: that one has been going on my whole life, and my mother experiences exactly the same phenomenon.
And so on … and on … and on. I could describe three dozen of these without breaking a sweat.
The only consistent theme in the aches and pains
There is one region of my body that clearly has more than its fair share of weird pains and other sensations, and that is my right lower half of my face, throat, and neck. Occasionally this hot zone extends even further, both up and down.
There is clearly something extra wrong in this area.
No more “have you considered/tried” questions, please!
A couple months into this project, and I have already been asked hundreds of “have you considered/tried” questions. The answer has been “yes” every single time, and I am now officially going to stop responding to those comments and questions. It’s not that they bother me. I appreciate them, in fact. It’s just the time! I am not made of the stuff.
"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!
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...