A decade ago I devoted myself to helping people with chronic pain, and now it’s time to face my ironic new reality:1 I have serious unexplained chronic pain myself. It may never stop, and I need to start learning to live with it rather than trying to fix it.
I have always been “prone” to aches and pains, and that’s why I became a massage therapist and then moved on to publishing PainScience.com. But that tendency was a pain puppy humping my leg compared to the Cerberus of suffering that’s mauling me now. I’ve graduated to the pain big leagues.
For three years I kept my faith that relief had to be just around the corner, but my disappointment is now as chronic as my pain. Hope has become a distraction. I’ve been like a blind man waiting for my sight to return instead of learning braille. It’s acceptance time.
Pain and suffering have driven me into hiding
I want my friends and colleagues to know why I have become even more of a recluse. It’s not just natural writerly introversion anymore.
The pain is the icing on top of a scorching seven-year run of grim bad luck and stress, which began with being harassed out of my career in massage therapy. This is the explanation for a lot of sad lameness. It’s why I barely know most of my best friends’ kids, why I haven’t finished the last 5% of my bachelor’s degree, and why I’ve become one of those irritating people who answers every invitation with a “maybe” and bails on half the things I commit to. I never know what I’m going to be able to cope with on a given day until it’s right in front of me.
This is also why my wife continues to travel alone every year.2 She has less of a husband thanks to this.
So what seems to be the problem?
Mostly widespread soreness and joint pain like the early stages of the flu, a parade of agonizing hot spots that are always on the verge of breaking my spirit, and a lot of sickly fatigue. All of which is easily provoked by exercise.
But there’s more and weirder. I have many stranger pains: pulses of stabbing chest pain, electric shocks in my face and jaw, a shoulder emergency last year that kept me awake for three days. And thunderclap headaches (just as bad as they sound). And the much milder but 8-week-long headache that shat on the end of 2017. Weirdest of all? My armpits get sore, about once a month for three years now, sometimes so bad that I can’t let my arms hang by my sides.
There’s also a dizzying array of “other” symptoms, including dizziness and the occasional wrenching blasts of vertigo. Throat and neck muscle spasms and suffocating tightness around my chest, exactly like a “multiple sclerosis hug,” but not actually that. Waves of numbness and tingling. Many nasty episodes of muscle twitching.3 Violent heart palpations. Diarrhea (the most demoralizing of all my symptoms). And migraines — sorta.4
Themes in all that misery:
- Such variety. It’s like I have five problems, not one!
- Non-specific! So many symptoms that could be symptoms of practically anything.
- Subjective! No objective signs at all:5 most of it is sensory only, “just” things I feel.
And what’s the diagnosis?
Nothing turned up in a few phases of medical investigation in 2015 and 2016. My “MS hug” is not caused by MS. My thunderclap headaches are not brain bleeds. My tremors are not Parkinsonian. I am not deficient in vitamins B or D. There is no tumour lurking in my chest or skull, nor any markers of inflammation in my blood. My heart beats as steadily as an atomic clock, and my nerves conduct impulses like champs.
So for now I just have a lot of “medically unexplained symptoms,” mainly pain and fatigue, and the medical term most often bestowed on patients like me is “fibromyalgia.” Yes, just like Lady Gaga recently announced. I’ve been reluctant to accept (or publicly advertise) such a stigmatized and baffling pseudo-diagnosis, but I can’t avoid it any longer. No other shoe fits, this one does, and I can’t seem to take it off. And if it’s good enough for Gaga…
But it doesn’t really satisfy, either. Fibromyalgia is just a label for a collection of symptoms, not an explanation for them. There are many theories (and no real answers) about why some people suffer this fate. One of the more credible ideas is that it is a consequence of severe chronic stress — one form of burnout. And that fits me rather well too.
No, I am not just getting older
Are you thinking that “mainly pain and fatigue” just sounds like a typical day in the life of a middle-aged person? You’re not alone: most healthy people have some trouble believing that these symptoms are distinct from the soreness and weariness that becomes the new normal as we cruise through our fourth and fifth decades. This is one of the main reasons fibromyalgia gets no respect.
But this is way worse than age 46 should feel. It feels jarringly closer to constantly having the flu, or like I keep falling down some stairs and have all the consequences except the bruising. My life as I knew it seems to be over. Much that was once easy for me is now hard, and activities I loved are now history, like hiking, or even walking for half an hour.6 And the sport of ultimate,7 and there’s nothing I’ve ever loved doing even half as much as that.
I got into this mess the same way one goes bankrupt: slowly, then quickly. I was showing signs of exercise intolerance as long as a decade ago, and I seemed to be “injury prone.” I spent several years wondering if that soreness was normal for my age and comparing soreness and fatigue notes with other ultimate players.8 By 2010, I had mostly settled on definitely abnormal, and that was still long before the poop really hit the blower in 2015. Any resemblance between my problems and “just getting older” has vanished in the last 3 years.
Burnout doesn’t do it justice: the 2010 crises
I blame my poor health on severe and prolonged stress. That’s my hardest-working theory. It’s easy to believe, looking at the intensity of the last decade of my life. I was already an exhausted, nerve-jangled, workaholic entrepreneur by 2010, but then — already feeling “burned out” — things rapidly got much worse:
- My professional regulator menaced me with censure and censorship.
- I made the leap trying to make a living as a writer. I succeeded, but it wasn’t a peaceful process.
- My wife was severely injured in a car accident while travelling alone in Asia.
These events kicked it up to a new level. The stress got so severe it started to feel toxic.9 And I never really recovered. I was just immersed in the fallout and more workaholism… until the stress-ante got upped again.
And then 2015 and 2016 tried to kill me
Things can always get worse, and they did:
- First I was tortured by a rare tonsil stone, for one year, a sensory nightmare that then collided with more nightmares.
- A horrendous business disaster.
- A daunting new legal threat.
- The untimely death of a good friend.
- Trying to cope with all of the above, I gave myself an even worse problem: I got badly addicted to a tranquilizer (Ativan) and then, when I realized my mistake, I rushed withdrawal, which was a huge mistake.
I never took another Ativan, but that felt like being on fire beside a swimming pool and refusing to jump in.
I survived, but not in good condition. Shit gradually calmed down, but for a long time I had more symptoms than God gave to Job. The exotic sensory symptoms in that period are why I remain open-minded to a diagnosis of psychosomatic and stress-powered illness.
So all that stress! Is it psychosomatic then? Am I a “basket case”?
Definitely maybe. This is the other big reason for the stigma of fibromyalgia. A strong pattern of diverse sensory and nonspecific symptoms with no objective signs of medical trouble tends to suggest psychosomatic illness. My symptoms are so diverse that it would be tough for one or even a couple diseases to cause all of them, but there is almost no limit to how much crap our own minds can inflict on us.
I often fall into the habit of assuming that psychosomatic symptoms are mostly minor because they are “just” psychological. While there are lots of minor ones, there are also plenty of surprisingly dire psychosomatic symptoms (excellent 15-minute lecture there). So I have to admit — in the absence of evidence to the contrary — that my symptoms could be the medical equivalent of being convinced by a hypnotist that I can’t pull my hands apart.
Many times my symptoms have escalated to the point that would have sent any sane person to a hospital. But I’ve been through eleventy-one of those crises, and I know the drill: the WTF-symptom-of-the-week will back off eventually, never to return, or not for weeks or months. This habit my symptoms have of backing off “just in time” also smacks of psychology to me. (Or, of course, just good ol’ regression to the mean.)
On the other hand, biology is destiny, and many diseases are extremely hard to diagnose. For every case of genuinely mind-powered illness, there’s probably another that’s just so hard to diagnose that you’re screwed without Dr. Gregory House. These days I collect chilling stories of sneaky diseases that fly under the diagnostic radar for years. If I drop dead tomorrow, I will be the least surprised person ever. My epitaph will read, “I told you I was sick.”
It’s impossible for me not to still suspect an undiagosed disease and hope for its treatment. Pathology is a vast wilderness, and I might be lost in it — who knows what woods I’ve stumbled into?
And let’s not forget that it’s all-too-possible to have both a disease and psychosomatic symptoms.
Trick question: how long does a fibromyalgia sufferer keep hoping/fearing that it could be something else? Answer: we never stop!
The good news
I can really relate to and empathize with the suffering of my readers and customers now. So there’s that.
- Wait to get better… or for more diagnosable signs and symptoms to emerge, at which point I’ll finally go back to a doctor.10
- While I wait, I will pursue a peaceful, simple lifestyle, maximizing my health and fitness as much as possible.
- Experiment patiently with self-treatment methods, giving priority to the options that are the most rational, the most likely to work … or at least likely to be helpful in other ways.
I am not tempted to try alternative medicine. The best of alt-med is arguably not alternative at all — e.g. nutrition, mindfulness, relaxation, massage, and so on — and the rest of what alt-med offers ranges from dubious at best to insane bollocks at the worst. You can’t fool a magician with his own tricks, and you can’t give false hope to an alt-med apostate like me: I’ve seen how the sausage is made, and I feel no surge of false hope when someone tells me (and they have) “it’s all coming from your jaw, you should see this guy in Seattle, he’s a Level 17 TMJ Epic Master, namaste.” Most of what sounds promising to the layperson just sounds like a line of bull to me.
Update: the day after publishing
The response to my this article has been huge and heartwarming, a 24-hour avalanche of empathy and helpful suggestions. It’s impressive and fascinating how many people clearly think my story is almost identical to their own.
All these seemingly “identical” cases have got me pondering: syndromes consist of non-specific symptoms by definition, and batches of such symptoms will always seem more similar than they actually are… because blurry pictures look more alike than sharp and clear ones. Non-specific symptoms are generalized biological reactions to adversity. Anxiety can cause any of them, and so can cancer. Any complex cases without pathognomic (specific, defining) symptoms are bound to have extensive overlap of their non-specific symptoms.
There are many ways to be sick, and relatively few ways to feel bad.
Update: early 2019 — better
There’s been an obvious long-term overall improvement trend. Most notably, the insane variety of symptoms of 2015-2017 seems to mostly be over, despite frequent weird echoes — I am still a rich source of “well that’s weird” sensations.
The bad news is I’ve also seen steady worsening of one subcategory of symptoms, which look an awful lot like the symptoms of an inflammatory arthritis, especially in the spine. Definitely not out of the woods yet.
God has a morbid sense of humour: "THOU SHALT KNOW THE CHRONIC PAIN OF YOUR AUDIENCE, THE BETTER TO SERVE THEM, BUT ALSO JUST BECAUSE I AM A GIANT A-HOLE." *smite*
But is it really irony? Or is it more like rain on my wedding day? Ironically, people are perpetually arguing about what exactly constitutes irony. It’s a very slippery concept. And because it’s ambiguous and tricky, popular usage covers a really broad range. And I think “pain writer gets chronic pain” is comfortably within that range, I think. Seems ironic to me! And what a useless word if I can’t use it here. ↩
If I felt healthy, I would be joining her for some of her trips. I’m not a good traveller at the best of times — I have too much trouble sleeping, and nothing is fun after a few nights of barely sleeping — but this is the worst of times for me, the worst I’ve ever had, and travelling in this state is just unthinkable. The diarrhea alone… *shudder* ↩
Ever had a persistent eyelid twitch? Now imagine that happening regularly in any muscle at all, selected at random from around your body, once or twice a week, with no consistency in any property. Some are fast and gentle, others slow and strong. Some are more like a rhymic quivering, others like a spasm. And when they strike, you don’t know if it’s going to keep doing it for a minute or a week or a month. The worst ever was a twitch in my right latissimus dorsi muscle that carried on for about eight months, about 20–60 daily twitches, or occasionally much worse, enough to wreck a day, or a night, or both. Just when I thought I was going to lose my mind from it, it just finally backed off. ↩
Painless migraines are a thing, which I didn’t know about until I started having them. The pathology is much like migraine, but just affecting a different part of the brain, causing just distinctive visual disturbances, the “aura” part of migraines. They are damned bizarre, and contribute very strongly to the impression that something terrible must be wrong with me, and yet apparently this is actually fairly common and usually isn’t caused by any pathology. ↩
Well, not quite none. But this is not a medical file, so I won’t delve. Suffice to say there are a couple of signs that may be valuable clues… or just red herrings. ↩
I can and do still go for half hour walks, but it’s a gamble. Half an hour of walking is right on the threshold of what I can usually tolerate, and sometimes it’s too much. Occasionally a half hour walk will wreck the rest of the day, causing strong fatigue and malaise for hours. ↩
Ultimate is a Frisbee team sport, co-ed and self-refereed, with soccer-like intensity and usually the mood of a good party. Players tend to be jock-nerd hybrids: lots of engineers and scientists. Hippies invented the sport, but have mostly been displaced. I’ve been playing since 1997. ↩
For ages I was on the verge of thinking I should stop playing ultimate. Many thirtysomething ultimate players feel that way, and many do wash out before they hit 40, so it’s not necessarily obvious that my troubles were excessive. I went back and forth on it for ages. In the earlier stages, I usually talked myself into believing that my tendency to soreness wasn’t so different from other people, or maybe only a little worse. But it slowly became clear that I could easily “win” any bitch session with other age-matched players.
It’s really tough to measure pain and suffering against what other people are feeling, but there were many clues that I was worse off. For instance, many of them still played twice per week (and still do), which had become unthinkable for me. Or they would report 2-3 days of wicked soreness after the first game of the season, whereas I would be sore for an entire week, still struggling with the dregs of it at the next game. And so on. ↩
Many times I woke up in my wife’s hospital room in Thailand, nauseous with anxiety and fatigue, sweaty and clammy, my heart pounding so hard and for so long that it ached with fatigue. It was not just unpleasant, it was medically alarming. Stroke or heart attack seemed like clear and present dangers. Severe stress feels genuinely dangerous, ruinous. ↩
I haven’t pursued medical investigation in more than a year now, because the last time I went there it was just a parade of negative test results and medical specialists who weren’t sure what to say to me. I’ll re-open the investigation if I develop symptoms that warrant it. I’ve been on the verge of that for months (the 8-week headache brought me right to the brink). It’s not clear exactly where that line is, but I think I’ll know it when I feel it. ↩