My eyes popped open at 3:30 AM. Uh oh. I was in pain. I knew pain. This was it. After being diagnosed with rheumatoid arthritis a decade ago, I’d lived with pain in varying degrees in various places on my body. This was different. Worse. Pain like I’d never felt before in my life. My right arm felt like it weighed 600 pounds. If I barely moved it, I got a searing jolt from my fingertips to my neck, as if a third rail had been implanted in my arm.
This was not normal.
I moved to a recliner in the living room, sitting up with my arm slung on top of my head, looking like that kid in class who raises his hand but never gets called on. It was the only position I could bear without screaming in agony. Then I cried until the sun came up.
I needed a doctor, stat, but what kind? I didn’t even know what this was. I live with my mother in Palm Springs, California. The rheumatologist who treats my RA was two hours away in Los Angeles. I don’t have a primary doctor (I know, I know). I felt stupid going to the emergency room and an urgent care center seemed… not good enough.
My mom regularly visited a local pain doctor I always jokingly called “Dr. Feelgood.” She never thought that was funny. Now I got it. Her pain was no joke and I had treated it and her disrespectfully.
“Many — if not most — women[‘s pain] is often abruptly dismissed as psychological — a physical manifestation of stress, anxiety, or depression,” Laura Kiesel wrote on Harvard Health Blog’s Women and Pain: Disparities in Experience and Treatment. As an RA patient, I should know better than to dismiss anyone’s pain.
Dr. Feelgood squeezed me in immediately, thanks to Mom. He told me I probably pinched a nerve in my cervical spine (a fancy way of saying neck). He didn’t know for sure without an MRI, so in the meantime for temporary relief, he shot me up with “the strongest drugs I’m allowed to give you” and sent me on my way.
This literal pain in my neck came out of nowhere with zero warning signs. What caused it? My rheumatoid arthritis? Riding ATVs? Turning 50? Oral sex? “My neck, my back, la la la la la la….” I Googled furiously with my one good arm but there was no clear answer. Could be anything. The only thing I knew was that just sitting at my desk typing — any act that suspended my arm in the air for even a millisecond — was pure torture.
Dr. Feelgood’s shots did absolutely nothing, by the way. I was crippled. My hand didn’t work properly so I dropped everything. I had throbbing pain in my elbow and stabbing pains in my shoulder blades. I could barely shower, brush my teeth, and dress myself without whimpering and fearing my arm would rip out of the socket and plop onto the ground like a zombie. I couldn’t walk my dogs down the street without putting my arm back on top of my head. After a block I had to turn around and go home hunched over because I couldn’t lift my head up straight. Quasimodo on poop patrol.
Making Sense of My Pain
Pain is subjective. Too many times, we tolerate it and avoid doctors longer than we should. Women’s pain may not be taken as seriously once they get to the doctor; men don’t even want to show up to begin with. According to the Cleveland Clinic’s MENtion It campaign, 65 percent of men avoid the doctor for as long as possible and 37 percent withhold information because they don’t want to deal with the diagnosis.
In my case, my pain was so severe I made an appointment with an orthopedic surgeon immediately, which of course meant earliest available was in seven days and was with a physician’s assistant. The PA asked me my pain level from 1 to 10 on the Wong-Baker Faces Scale. As an RA patient, how many times have I been asked my pain level according to that scale with the emoji faces? I wanted to shout to the heavens, “11 GOD DAMMIT!” but the emoji for 10 looked so pathetic with tears streaming down its face.
I wasn’t blubbering like a baby so I said 8 because 8 looked totally miserable and a little gassy.
According to a study in the journal Pain Reports, “the Faces Pain Scale is patients’ most preferred scale, followed by a Verbal Rating Scale. The Numerical Rating Scale and Visual Analogue Scale were both least preferred and had higher rates of incorrect responses.”
It’s actually possible to be wrong about your own pain? Sheesh. All I knew was that I couldn’t function unless my arm was draped over my head. The PA explained that was called “impingement” of nerve roots. I got an X-ray and an MRI, which took another week. Another week after that the PA informed me that I had degenerative disc disease and “military neck,” so instead of a curve in my cervical spine, mine was abnormally straight and made it look like I was standing at attention. Ten-hut!
Most important, I was officially diagnosed with a herniated disc. Basically, the rubbery cushion between my spinal bones had pushed through the cracks and was pressing on the nerves that ran all the way down from my neck to my hand. It was possible the disc had popped out and ruptured. He called it “very real.”
“NO DUH,” I wanted to shout to the heavens again, but just sat there quietly letting my mind rage-wander, thereby missing most of the important information he was telling me.
What I did catch: The treatment for a herniated disc was up to three outpatient epidural shots in my neck with a new pain doctor. (Dr. Feelgood wasn’t affiliated with this hospital unfortunately.) The shots would hopefully decrease inflammation and stop the disc from touching nerves. If that didn’t work, surgery to remove and replace the disc was the final option.
In a Pain Fog While Waiting for Treatment
After being approved by my insurance for the first epidural shot, the next available time slot was a month away. I almost lost it. That meant 30 more days of insane pain. The PA prescribed a prednisone pack and muscle relaxers to get me through it. Not once during this ordeal was I ever offered opioids. I didn’t ask either because I didn’t want to go down that slippery slope. I saw how quickly I became emotionally attached to my Tylenol PM, CBD oil, and steroid packs. I couldn’t wait until I could pop my next pill or slather myself in cannabis for any kind of relief, even if it was doing zilch.
But I did wonder if I had spoken up more about how much agony I was in — if I said 10 — would the PA have recommended other painkillers? I’ll never know.
For the next 30 days after my diagnosis, I really suffered. I spent most of my days sitting in my new home office — aka the only corner of the couch where I felt mildly comfortable, or napping in my bed covered in ice packs. I didn’t go any where, I didn’t do anything. I stopped going to the gym and making plans with friends. I was quarantined, juiced up on steroids. I went to bed at 8 PM, woke up at 3:30 AM when the Tylenol PM wore off, and headed back to my recliner covered in ice packs. Then my day of suffering started all over again.
I’m so fortunate that I work from home as a writer. I kept thinking about the people who had a herniated disc like mine but still had to show up to work every day. How in the hell could they do it? I kept accepting assignments because there’s no workers’ comp for the self-employed. No workey, no money. And yet I was out of my mind delirious and couldn’t focus for more than 15 minutes at a time. I couldn’t imagine being in an office having to engage with people in meetings and be productive. Impossible.
There are good reasons patients with debilitating and chronic pain are too scared to be honest about what we’re going through. At work, we don’t want to be perceived as weak or lazy or even liars. Admitting you’re physically incapacitated can be humbling and embarrassing. Legally, you can’t be discriminated at work because of a disability but next time a promotion comes up, who’s more like to get that job? The healthy person or the invalid?
At home, complaining to our loved ones gets old after a couple weeks. My pain and the pills I took for it made me feel disgusting, out of it, and bloated, the polar opposite of desirable. My relationship with my girlfriend was strained, and not because of her; she was as supportive as humanly possible. It was because of my misery.
When Treatment Is a Major Letdown
I counted down the days to my epidural. When the big day finally arrived, six weeks after the nightmare began, it wasn’t exactly fun and didn’t help as much as I’d hoped. I had to lay motionless on a metal table, wide awake, while the doc plunged a giant needle into my neck. The first shot decreased my pain enough for me to function a little more normally but I was a mess for a week. My face turned as red as a tomato, I had a splitting headache, and I woke up drenched in sweat from crazy hot flashes. Like, I could wring my shirt out and fill up a Mason jar kind of hot flashes. I’d describe the second shot, another agonizing month later, like the kids’ board game Operation. I got a zap that felt like all the nerves in my arm had short-circuited.
“Ahhhhhh!” I screamed in the middle of the procedure. I never complained when I got blood drawn or had an IV for my infusions at my RA appointments. But this hurt like a motherclucker and I made it known. “Owwwww!”
The bright red face, headache, and night sweats returned. I also had a new problem: Suddenly my arm and hand tingled uncontrollably. Thankfully, my pain decreased to about 5, and I started forcing myself to do more, including a trip to New York for my book launch party, even though I couldn’t keep my head up by the end of the night. I took a Hawaiian cruise for my 50th birthday. Ziplining, surfing, and snorkeling were out. However, eating like an animal at the buffet was no problem. I still couldn’t walk far distances or sit in a chair for long, unless my feet were up. This made working and driving a challenge. (Not to mention hula-ing.)
I had so much junk in my body that I just didn’t feel like myself. The steroids caused strange muscle cramps, brain fog, and paranoia. I Googled my symptoms constantly, convinced I was actually dying. I felt sorry for myself and could not see any light at the end of the tunnel. I genuinely thought this was the end of my life as I knew it. I saw able-bodied people doing normal activities and I felt so depressed.
But I didn’t admit that so I wouldn’t worry my mom or my girlfriend. I’m one of those annoying over-posters on social media but, during this time, my Instagram showed few clues that I was in anguish.
The epidural shots helped a little and I was grateful, but almost five months after it all began, I was still nowhere near normal. I had one final option left — surgery. It seemed extreme. I felt like, why in the world would I deign to think I, of all people, needed surgery? I can tough this out. There are people a lot worse off than me in the world, like #10 pain face emoji guy and he’s not having surgery. Is he? At the same time, I had this intuition that I must do it.
So I managed to snag an appointment with the actual orthopedic surgeon stat. He took one look at my MRI and said, “Oh yeah, this is major.”
Getting Surgery — and Validation
I scheduled an anterior cervical discectomy fusion C6-7 yet another month later. Why not? I’d waited this friggin’ long, what was another 30 days? I was a pro at this pain stuff now. Besides, I wanted to wait to do it during the holidays so I could recover while nobody was working.
On December 17, I had surgery to remove and replace the disc in my neck. They also installed a nifty little cage to hold the new disc in place, which was a surprise to me because I hadn’t been listening to the PA. Guess what? It’s made of plastic and will be there forever and makes me feel like I have a fishbone caught in my throat. But it’s totally worth it. My surgeon told my mom the disc damage was “extensive” and that debris was pressing on all sorts of nerves and things. And that I definitely 100 percent needed to do the procedure.
I don’t know why, but hearing that I felt vindicated for some reason, if only to myself.
Today, I’m five weeks into my recovery and, for the first time in half a year, I feel normal. Well, if normal means a fishbone lodged in your throat permanently. But I can walk and hike again. I don’t have burning, aching, throbbing pains in my arms, neck, and shoulders that make me want to jump off a bridge.
So, what is the point of all of this? Melissa Manchester once sang: “Don’t cry out loud! Just keep it inside and learn how to hide your feelings!” But that’s dumb. Do not keep and hide your pain inside. Shout it to the rafters.
I guess what I’m trying to say is that I actually listened to my body and got help right away, and it STILL took six months to get relief. Don’t be shy when describing your pain. I didn’t need the PA and surgeon to tell me my neck was “major.” I knew it, yet I still doubted myself.
When it comes to your health, don’t be a hero. There’s no trophy for being a tough guy or gal. If you’re in pain, see your doctor immediately. And speak up for yourself.
Fly high and proud. And if you should fall, remember you almost had it all…
Okay that’s enough Melissa Manchester.
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Cleveland Clinic Survey: Men Will Do Almost Anything to Avoid Going to the Doctor. Cleveland Clinic. https://newsroom.clevelandclinic.org/2019/09/04/cleveland-clinic-survey-men-will-do-almost-anything-to-avoid-going-to-the-doctor.
Kiesel L. Women and pain: Disparities in experience and treatment. Harvard Health Publishing. https://www.health.harvard.edu/blog/women-and-pain-disparities-in-experience-and-treatment-2017100912562.
Pathak A. The utility and validity of pain intensity rating scales for use in developing countries. Pain Reports. September October 2018. doi: http://dx.doi.org/10.1097/PR9.0000000000000672.