Fibromyalgia Misadventures: Welcome Home
There are many medical diagnoses a doctor can pronounce that cause your heart to drop out of your chest. They paralyze your brain and throw you onto the double pathway of grief and denial. Doctors have a special tone of voice when they deliver the news, and their faces adopt a stereotypical expression — one actors and actresses mimic in movies and television. And, if you’re lucky, they take your hand and move on with a plan for your treatment. Because even when they use the dreaded c-word, there’s usually something up their sleeve. (Bet you didn’t think I’d use the words “cancer” and “lucky” in the same paragraph)
Some of us don’t see that expression. We don’t get the positive outlook and plan for the future, either. Instead, the doctor shoves his hands in his pockets and says three words that gut you — nice and clean, “You have fibromyalgia.” And when you stare at him, he tacks on (because he wants you to feel a little bit worse), “There’s nothing we can do.”
Boom. Mic drop.
The Eight-Year Answer
I know, it sounds dramatic. True story, though. Four years ago — following EIGHT years of absurd testing — my neurologist leaned against the door and dropped the hammer. No sympathetic smile to soften the blow, no plan for the future, just two sentences and a blank look while I took in the words. Stood and watched as I processed a diagnosis that only affects 2–4% of people; a diagnosis with no cure.
(Didn’t see that coming, did you?)
No, you expected a tale of a jerk doctor. But he stood there because he wanted to see the relief on my face. Eight years of lab work, imaging, trips to the ER, and six surgeries — all chasing down intolerable pain.
Eight years, switching doctors as they told me:
- Lose weight
- Sleep more
- Talk to a psychologist
- Eat better
- Revisit and slow down my weight loss plan
- Stop reading internet sites
Eight years, in which I kissed six of my organs good-bye (nothing critical for continued existence, obviously). Sitting on gurneys during ER visits, questioning my sanity despite the intense waves of pain in my body. Trying to explain to anesthetists that my pain threshold really was nil, only to have them curse me in the Recovery Room. Hearing the words “drug addict” and “hypochondriac” thrown around.
Eight years of pure hell, and now I had the answer to ALL of it. One dot to connect all the lines.
So, yeah, I laughed. And my doctor laughed. At a horrible diagnosis with no cure.
Fibromyalgia is one of many invisible illnesses.
Outside, I look perfectly normal (well, as close as I’m going to get).
Inside, however, my body is a combination of a yarn ball six kittens have played with, a haunted house, a car fire, a slinky post-tornado, and the kind of fog you only see in horror movies (complete with barely-seen monsters). If I looked the way I felt, I'd frighten small children — even on a good day. Actually, I’d frighten Green Berets. (Seriously, people with fibro DON’T make for pretty pictures)
But invisible illnesses disguise themselves in normality. And since even the medical community prefers to see dangling limbs and spurting arteries, you fall into the “healthy” category if you LOOK healthy.
Then comes the kicker: the primary symptom of fibro is PAIN. Pain looks like NOTHING. It doesn’t appear on lab work, won’t show on CT scans, radiographs, or MRIs, and can’t even have the decency to produce a bruise. It’s felt by the individual alone — on a subjective scale.
Are you familiar with that be-damned pain scale from 1–10? Yeah, useless to people with fibro. In our daily lives, we FUNCTION around 7–8. (Incidentally, don’t tell nurses or doctors your pain’s a 15. They roll their eyes — even when you’re dead serious)
Fibromyalgia is a centralized pain state. The brain and spinal cord misinterpret pain (AND non-pain) signals throughout our bodies. We live in an amplified pain state where everything feels worse than it is. (Hence that 15. I wasn’t kidding — I honestly felt THAT bad!) And this pain state is switched on ALL THE TIME.
- Stubbing our toes on the coffee table can mean incapacitation
- Morning aches translate into an inability to get in the shower
- Weather changes? More like getting hit by a Mack truck
But no one SEES anything. It’s all inside — which many people (including doctors) decide means in our heads. It’s not entirely wrong, as our brains ARE screwing up the signals, but the message isn’t the same. So we get lost in the shuffle.
Sometimes for eight years.
Pick a Symptom, Any Symptom
Don’t get me wrong, constantly shifting pain sucks. Actually, let me clarify:
Shifting, changing, unrelenting pain SUCKS!
But I didn’t spend eight years chasing pain. They don’t have tests for pain. Hell, they keep changing their mind on how to diagnose fibro! Nope, I kept falling further and further down the rabbit hole pursuing fibromyalgia’s best friends:
- Interstitial cystitis
- Temoporomandibular joint (TMJ) disorder
- Irritable bowel syndrome
- Chronic fatigue syndrome
- Sleep disorder
That isn’t even the entire list, either, just those I’ve fought with. And what’s laughable is no one knows if fibro causes them, if they contribute to fibro, or if they coincide. They certainly feed off one another.
Fibro interferes with your ability to sleep. If you’ve never endured a sleep study (fun times), they run an EEG during the process. Gamma waves indicate the intrusion of pain on REM sleep. (There’s that nasty p-word again) And when you don’t get enough rest, fatigue builds up.
Ta-dah! Welcome to the exhaustion cycle of fibro! (It’s one of the best parts, let me assure you)
Everything with pain makes you want to scream. Your nerves get a signal — one equivalent to a tiny scratch — and they start manning the “we’re about to die” stations.
Fibro turns even minor migraines into an ordeal. You start wondering if you can remove your brain with a spoon. (I know I’m not the only one who’s stood over the silverware drawer, considering the at-home operation)
Then the years of testing for ALL of these conditions pile up. With idiot doctors who don’t believe in fibromyalgia. Or nurses who mutter about having to administer ANOTHER opioid injection because your heart rate climbed through the roof post-op. (In case you wondered: You have NO control over that. It’s a pain response from your idiot brain and spinal cord having a meltdown) And my personal favorite: people suggesting that more sunshine would make the pain go away.
I’ve spent entire days outside in the bright sun. Guess what I got for my trouble? A sunburn and MORE pain!
Depression follows quickly on the heels of those medical visits. Then anxiety steps into your head when you go to your next appointment. Maybe you ARE crazy. What if it IS all in your head? (The irony kills me every time) A sick spiral starts that’s difficult to break free from.
And if you don’t find a good doctor, you may NEVER escape.
Yeah, eight years. Every bit as crazy as it sounds.
So I Laugh
Now I sit, four years later…and the world didn’t get any smarter. I still hear the same prejudices in medical offices (when I grit my teeth and go). People frown when I grab hold of shopping carts to stay upright on my bad days. And I fight with myself when I fall asleep on the couch, frustrated that I didn’t accomplish something more significant.
Every time I turn around, science picks this horrible disorder apart in a new way.
- It lives in the muscle
- Nope, it lives in the nerves
- Wait, we think it’s in the blood cells now!
And while I understand their fascination, I — and about 10 million other people — live with it. We’re enduring pain cranked WAY past 11 daily. Trying to explain it to friends, family, strangers, and idiotic medical professionals who should know better.
I could sink into the pain, the depression, and the despair. Or I could laugh.
I want to laugh.
But I also want to share the reality of this nasty disorder.
Why not combine the two? Why not break fibromyalgia down into its various pieces while still retaining some humor?
Because, honestly, when you’re fighting your body’s determination to scream over every little sensation, you need a sense of humor.
So, welcome home to fibromyalgia. It’s gonna suck, and there isn’t much anyone can do.
But you CAN laugh. Together, we can laugh about it.