I am updating and republishing some of my early articles from this blog. Please enjoy this article, originally published under the title “Color” in March of 2017, about the early days of my chronic pain journey.
CN: extensive discussion of the experience of anxiety, chronic pain, medication side effects, and medical neglect.
Duloxetine was the first pain medication my doctor ever prescribed me, an anti-depressant that can sometimes help with pain. A year after I injured my sacrum, I was still slipping out of alignment every two weeks, which made it pretty hard to go to work or stay on top of chores or spend the night dancing or to do really anything normal and useful. I’m not sure why my doctor concluded that I should start with an anti-depressant since I didn’t have depression. I had pain, and I was sad and frustrated about having pain, and apparently, that was worth medicating.
My insurance, of course, needed pre-authorization before covering the medication, which required my doctor’s office to file some simple paperwork. My pharmacist advised me to bug my doctor’s office to make sure the paperwork got done. I did, and then I waited a week but there was still no sign of my medication. I called my pharmacy. My pharmacy told me to call my insurance. My insurance told me to call my doctor. I called my doctor. When I told the receptionist that all of us–my insurance, the pharmacy, and I– were all still waiting on them to put the paperwork through, she just said, “Okay, I’ll let her know.”
Over the next three weeks, I repeated this succession of calling my insurance, my pharmacy, and then calling my doctor, nine times. My insurance sent my doctor requests for the necessary paperwork four times. On advice from a friend, I asked the receptionist if I could speak to the billing person at my doctor’s office. She said, the person in charge of billing wasn’t in but she would be tomorrow. But when I called the next day, something had come up and she wasn’t in after all. Another phone call on yet another day and, finally, she was in, she had no idea that the paperwork hadn’t gone through and she had only just submitted it–a full three weeks after they had prescribed me the medication.
But my insurance did not approve the pre-authorization. Because, of course, they didn’t. They wanted to see a paper trail demonstrating that I had tried more standard pain medications first, such as Tylenol or Ibuprofen, before escalating to a specialty medication like duloxetine. I no longer used Ibuprofen because after taking 2-4 a day every day for months and still finding myself lying in bed crying in pain, I was worried about doing damage to my stomach. No paper trail meant no pre-authorization. I never received my prescription for duloxetine.
Instead, I received a voicemail from the nurse saying my doctor was prescribing me something else but she didn’t say what she was prescribing me. I got a text message from my pharmacy fifteen minutes later: my prescription beginning with the letters “ET” was ready and that was the full extent of the information I had on the medication.
Etodolac was the first prescription pain medication that I actually received but once I had it, I was terrified to take it.
What if my doctor was wrong about this being the right treatment path for me? Bodyworkers told me many times that I’d be back to my old self in a few months but they were wrong. I showed signs of improvement in December and naively leaned into the hope that I would be better soon but I was wrong. No one had been able to predict how I would respond to treatment, what would help, or what would hurt and getting it wrong meant losing weeks of progress. At that point, pain was the only insight I had into what was happening in my body and I didn’t want pain medication to block my access to that information. I didn’t want to get hurt again.
I tried taking etodolac on and off at first and then began taking it every day for a few weeks. Rather than removing the feeling of gravel in all my joints, it made the pain feel farther away so that I could focus on other things for longer.
I used up my bottle of pills that said “no more refills” and waited for my next doctor’s appointment to ask for more. When my doctor heard that etodolac was working but that I ran out, she asked, Why hadn’t I simply contacted them and asked for more refills?
I blinked. I wondered if requesting refills was anything like filing paperwork for pre-authorization.
Outloud, I mumbled something about not getting around to calling them and my doctor looked at me knowingly like she had just uncovered my weak point.
She decided to prescribe me a different NSAID to continue building my paper trail, with the intention of circling back to duloxetine once we had sufficient documentation. The next medication was called Mobic. My doctor also gave me a prescription for Gabapentin, to see if any of my pain was neuropathic.
She asked me sweetly, “Do you have any anxiety problems?”
I did but I was paranoid that admitting to a mental health problem would undermine my credibility to her in discussing my physical health, so I said, “Some, but most of it went away after I moved in with my boyfriend.”
“Well,” she said, “Gabapentin also helps with anxiety!”
So that I could distinguish the effects from one another, I took Mobic by itself for several weeks before adding Gabapentin. The first day I took Mobic, about half an hour after swallowing it, I felt as if the pain in every single one of my joints melted off of me and collected in a pool on the floor. I was so accustomed to pain in every corner of my body that I didn’t realize how many places I didn’t notice any more until the pain was gone. Wiping it away was euphoric. After that first amazing day, the medication mellowed out and continued to gently soften and reduce my pain while consistently keeping me away from big flares.
With Mobic well established in my system, I was given instructions to take Gabapentin once a day before bed until I was used to its effects, then take it a second time during the day, and eventually increase to a third.
The morning after I first took it, I got into a silly argument with my boyfriend. It was something about eggs or cleaning or something unimportant but my emotions escalated as if winning the argument was equivalent to defending my fundamental truths even as my logical brain recognized that it clearly wasn’t. I apologized and said I didn’t know what was going on and tried to relax and calm down. A few hours later, quite suddenly, I found myself in a good mood.
The next day, I woke up with the same panicky feeling I had during the argument but it was getting worse. It was as if screeching alarms were going off in my brain and ants were crawling under the skin of my chest. My psyche was being stretched thinner and thinner and I wanted to cry from the pain, but crying would surely cause the surface of my face to rupture. I thought someone was hunting me, striking me, and I was trying to escape, but no matter how much I closed or opened my eyes, the threat wouldn’t go away.
A long-time veteran of chronic anxiety, I quickly identified this feeling of panic, and while it hadn’t been triggered by my typical sources of stress, I approached it the way I would any particularly severe episode. I whipped out my mental health toolbox.
I tried switching my focus, I tried extended deep breathing, I tried comfort foods, I tried playing games that help me zone out. I tried focusing on the emotion at the center of the anxiety, feeling it and letting it flow through me.
Nothing touched it.
It was like reaching out to an old friend who’s going through a hard time and suddenly realizing that they can’t see you or hear you, no matter how much you shout and wave your hands at them. Nothing I did would ease my anxiety.
Around 2:00 PM the anxiety decreased, and it was replaced with a feeling of being deep underwater. My thoughts and movements were like pushing through molasses, slow and confused. I couldn’t focus on the reality in front of me. I couldn’t really do anything well.
The next morning, my anxiety was a little lower. I still felt tired and disconnected, but the alarms inside my head had stopped going off. It was at this time that I had the presence of mind to look over the possible side effects of Gabapentin and noticed on my medication bottle this warning: “Contact your doctor immediately if you have new or worsening mood/emotional changes or increased feelings of sadness/fear or thoughts of suicide.” I realized then that I was experiencing the worst of the side effects, from just the lowest dose, and that I should call my doctor right away.
Phone calls, of course, are a source of anxiety for me. I called and rather timidly told the receptionist that I was having concerning side effects to my medication and that I needed the doctor to call me about it. The receptionist responded with the dreaded, “Okay, I’ll tell her,“ and I wasn’t entirely surprised when I received no call back.
I called again the next day and slightly more urgently told the receptionist that I really needed to hear from the doctor about the medication. My anxiety was still sky high and I felt like crying or underwater at all times. Flaky or not, I couldn’t really believe that my doctor would ignore two such phone calls when I had an urgent medical issue. But I received no call back.
Desperate and panicked, I texted my best friend.
“I’m not going to take Gabapentin again tonight. I can’t do this anymore.”
“Shouldn’t you ask your doctor if it’s okay?” Phoebe asked, gently.
“I tried and I just can’t handle another day of out-of-control anxiety and nothing I do helps!”
“In my experience,” she said, “it can be dangerous to stop a heavy-duty medication without consulting a doctor first. Can you please just wait one more day?”
Phoebe could always be trusted to fight for my well-being, even when I couldn’t. “…Okay,” I said.
The next day, there was a knock on my door and Phoebe whirled into the room, her coat and purse on the table before I knew what was happening.
“It’s my lunch break,” she said, already making herself comfortable on the couch, “And I thought I’d call your doctor and keep calling and be super annoying until they call you back.”
Together, we called my doctor’s office and went through the process of giving Phoebe permission to speak on my behalf. She told the receptionist that my anxiety from the medication was so bad that I wasn’t able to complete the phone call myself, which, really, was true by that point. They talked back and forth for a minute and then the call ended. Phoebe wrapped her arms around me, held me close, and stroked my hair. We talked quietly for the next few hours while we waited for a call back. It always seemed like if I were to just close my eyes, surely the urgent panic that filled the air would lessen and I could find peace under my eyelids, but it never worked.
We received no call back, so she called again and repeated the same script word for word. Annoyed, the receptionist said, “I know, you said that before.” Delighted by the receptionist’s irritation, Phoebe pressed on, stretching and expanding her body as she stepped into her beloved role of persistent, demanding diva.
With the perfect amount of drama, she informed the receptionist that the medication bottle directed I should contact my doctor as soon as possible and that my symptoms had been severe for four solid days. Surely, I shouldn’t be expected to wait so long for an answer?
“Okay, I’ll tell her,” said the receptionist.
Phoebe’s lunch break was up but she gave me one last hug by the door and promised that she’d make another phone call for me later on if necessary. She encouraged me to do the same as she gave my hand a squeeze. I was fairly certain that I didn’t have it in me to do so.
I received a phone call from the nurse a few hours later with the blessed news that I could stop taking Gabapentin. The nurse was so sorry that I had to experience the worse side effects and she wondered, had I tried Yoga?
To help with the pain from my injured sacrum?
My hypermobility-induced injury???
I bit my tongue and thought, At least I don’t have to take Gabapentin anymore.
That night was the first time in six days that I didn’t have to take that horrid medication and after initially falling asleep, I found myself inexplicably wide awake once every two hours.
Then, at 5 AM, I woke up, feeling perfectly normal, went to the bathroom, laid back down, and suddenly it was like someone had run through my shoulder with a needle. I was taken over by excruciating muscle spasms and nerve pain in areas nowhere near my injuries. I rolled from position to position trying to make the pain stop or lessen but it wouldn’t. I wasn’t sleepy in the slightest and the pain had me lit up like a Christmas tree. I waited and waited, concentrating on my breathing, and tried to find a reason to sleep. It took me two hours to do so.
I never noticed any decrease in pain while on Gabapentin.
On the first day off of the medication, I was still a little wiped out from the whole experience, but I felt much more like myself. The second day, I felt as if my whole life had been illustrated, remastered, and vividly clarified. Every sense, every emotion was full and rich and beautiful. For a week, I had been living in sepia tones and black and white. On that second day, I was living in technicolor.
About the writer: Kella Hanna-Wayne is the creator, editor, and main writer for Yopp. In addition to creating a collection of educational resources for social justice, she works as a freelance writer specializing in content about her experience with disability, chronic illness, mental health, and trauma. Her work has been published in Ms. Magazine blog, The BeZine, Betty’s Battleground, and Splain You a Thing. You can find her @KellaHannaWayne on Facebook, Twitter, Medium, and Instagram.