Two years ago I told the world that I had become a chronic pain patient, and isn’t that ironic for someone who writes about pain for a living? (It actually is, unlike rain on your wedding day.) My trouble started in 2015, I enjoyed no real relief for three years, and by 2018 I was “learning to live with it rather than trying to fix it.”
And then things finally got a little better. Not a lot.
And then worse.
And then better again.
And so on and on, like the graph of a stock market index, erratic but trending up over the months and years.
Rough patches have gotten tamer, shorter, and more spread out. Good patches are a little better, longer, and more frequent. It sounds like good news, and it’s true that I am much better off now than I was for the first three years of this ride.
But graphs can lie! I am also still much worse off than I ever was in my life before all this started, which is emotionally awkward. Am I happy or sad? Grateful or frustrated? All of the above. I am truly relieved that the worst mostly seems to be behind me, but the bigger picture is grim and even a failure to recover any further would be an unhappy ending.
My “improvement” in the last five years doesn’t look so impressive in the context of the last twenty years, since I was last truly healthy.
I am also painfully aware that things could get really rough again for no apparent reason. There have been enough weird setbacks along the way to feed that worry.
But hey, at least I’ve learned a lot
Oh, so much learning! Thank you, pain, for all the ^!%@!*&# lessons! Which I can pass on to PainScience.com readers. All this pain has had real professional utility for me; it has inspired a lot of good content development. Because I now have skin in the game, I have explored many ideas with much more vigour than I would have otherwise.
So here are a few things I am now quite confident about, knowledge that was hazy or not even on the radar just a couple years ago…
Turns out I’m a narcoleptic
Narcoleptics are not just bad at staying awake; we also suck at falling and staying asleep. Narcolepsy cuts both ways, and does most of its damage with chronic sleep deprivation. That probably explains why I have been prone to aches and pains since my 20s, and why I was vulnerable to whatever went wrong in 2015.
Sleep deprivation is really hard on physiology; doing it chronically for decades is a really bad idea. Unfortunately, narcoleptics don’t have much choice. Narcolepsy is explained but incurable: it’s caused by damage to a specific population of brain cells responsible for regulating sleep (probably collateral damage from infections).
I’m also a mutant with extrasensory powers!
I also probably possess a recently discovered gene for amplified “somatic awareness,” more intense bodily sensations, which is both a super-power and a curse. It’s probably why I have always loved massage, for instance — good things feel good — but high somatic awareness is also gasoline on the bonfire of any other medical problem. Just try to be chill about your symptoms when they are twice as “loud” than they should be.
Neuroinflammation explains a lot
Most of my symptoms are neuroinflammatory in character. Neuroinflammation is why sick and injured animals feel exhausted and fragile, a system that enforces rest and recuperation in response to injury and infection. It is a generalized response to threats to the system that might be triggered by perceived threats as well as actual ones. It is increasingly recognized as a likely driver of non-specific symptoms in conditions like chronic fatigue syndrome and fibromyalgia.
I still don’t know for sure how I got neuroinflamed, but it now seems clear that I did. It has been a great way to understand my symptoms, especially exercise intolerance.
Before: Many seemingly unrelated symptoms!
After: Oh hai, neuroinflammation, it’s just you again.
Benzo withdrawal is still the most likely primary culprit
I may have been off balance, but it was probably benzodiazapene withdrawal that knocked me down… and held me there. There are other possibilities, both known and unknowable ones that I have speculated about ad nauseum for years now, but the benzo withdrawal is the most elephant-in-the-room of all of them.
I’ve now been getting a lot of email from readers about this topic for a long time, responding to my story, and it’s clear that rushed benzo withdrawal just wrecks some people. Many were wounded before they tangled with benzos, just like me. There are many reasons why some people would be more vulnerable to it, but I bet lifelong sleep deprivation and that pesky somatic-awareness gene are terrific examples. In fact, benzo withdrawal is like an artificially induced high somatic awareness, so people with the HSA gene and benzo withdrawal are really getting it with both barrels, working together to create the loudest, weirdest feelings possible in a body. Good times.
One half milligram of lorazepam.
This is a very dangerous little pill (for some people more than others). Please always stop taking benzodiazapenes very slowly & with medical assistance.
Putting it all together: not a firm diagnosis, but a plausible “story”
So this is what I think probably happened to me, in one paragraph, the best I can do after five years of hell and desperate, educated guessing:
As a narcoleptic, I was chronically sleep deprived from an early age, and so probably had suffered from premature “inflammaging” and arthritis for many years. Thanks to my marvellous genetic mutation that makes me feel my body so well, all of that discomfort was exaggerated. So I was getting quite weary and fragile and vulnerable to whatever other trouble might come down the road… and then a whole lot of it did, most notably two unusually severe clusters of misfortune in 2010 and then again even worse in 2015. All that set me up to be the ultimate candidate for the worst possible case of benzo withdrawal syndrome. My neuroinflammatory warning system was strongly activated, not by single acute pathology or injury — the classic and well-understood cause of neuroinflammation — but by many smaller insults and the severe sensory distortions of benzo withdrawal. Neuroinflammation causes fatigue and fragility and severe exercise intolerance by “design,” and nicely accounts not only for all of my symptoms, but also their perpetual failure to ever develop into anything that can actually be diagnosed.
That hypothesis is clear and plausible and seems to fit all the facts much better than any other idea I have.
It’s interesting how it’s more of a “story” than a diagnosis. I think it this is what a lot of bizarre chronic pain cases are like: there is no one diagnosis, and no one solution either, because it’s just too messy.
Isn’t “fibromyalgia” the diagnosis?
Technically, yes, but it’s not a useful diagnosis. “Fibromyalgia” is just a label for unexplained widespread chronic pain, plus some other typical symptoms like fatigue and exercise intolerence, all of which I have. So I have often referred to my affliction as “fibromyalgia” (that’s how I originally announced it), but the term has no explanatory power, only descriptive.
Identifying myself as a fibromyalgia patient was a place to start, not to finish. I am way past being satisfied with a label alone. The cause of fibromyalgia remains a near perfect mystery and it’s likely that there are several common causes, all different and yet made to seem similar by the generalized neuroinflammatory response. The hypothesis above was an attempt to explain my case.
The body that cried wolf
What’s next? It’s probably time for more medical investigation — not so much to solve the mystery of my health problems, but to make sure that they aren’t covering up something else. One of the most depressing things about chronic pain is that, if it’s chronic enough, eventually it collides with other health problems — but will you even notice?
When you’re used to being in pain all the time, pain starts to lose its value as a warning signal.
For the first three years of this crisis, I usually had at least a dozen significant concurrent symptoms, any one of which was weird or bad enough to be a little worrisome. (And the minor symptoms were literally countless.)
These days, sometimes I can get through an entire day without being bullied by some strange sensation. Imagine! But not a week. In any given week, I can count on a symptom that would scare a sensible person into the closest emergency room. I have lost count of the number of stories I have heard about people seeking medical care for trivial symptoms that turned out to be something serious — symptoms that I definitely would have ignored.
Five years of symptom clutter has trained me to ignore almost everything my body tells me, because it is just telling me way too much. So I’ll be headed to the doctor for a general check-up soon, for the first time in a long time.
“So, how are you doing?” she’ll say.
“You tell me,” I’ll answer. “Because I seriously just cannot tell anymore.”