Anne Marie Ward - The Ampersand - May 2019
“I don’t know what my body is for other than just taking my head from room to room.” -John Mulaney, Kid Gorgeous
“Do you think that you could be depressed?”
I sat in my primary-care doctor’s office, presenting with severe, widespread joint pain, and tingling in my limbs and lips. It bloomed across my muscles, crawled up and down my skeleton.
This was the follow-up.
They had already tested for a slew of tick-borne diseases, not uncommon in the woodsy, rural area where I’m from. They often cause joint pain and neuropathy, or pins-and-needles. My doctor tested for Lyme Disease, Babesiosis, and Rocky Mountain Spotted Fever, notably. Negative.
They tested for rheumatoid factors: proteins in the blood that are markers of autoimmune disease like rheumatoid arthritis, which is characterized by severe joint pain and more common in women. Negative.
They also tested my levels of thyroid-produced hormones. Hypothyroidism is known to cause joint pain and stiffness and is also more common in women. Negative.
They tested for Vitamin D deficiency, not uncommon in the Northeastern United States, in people who spend a lot of time indoors, or in those who follow a strict vegan or vegetarian diets, as Vitamin D is often found in fortified milk, fish, egg yolks, or beef liver. And they tested for Vitamin B12 deficiency, especially not uncommon in people with long-term vegetarian or vegan diets, as B12 is naturally occurring in meat, eggs, or dairy products. Did you know that a much higher percentage of vegans and vegetarians are also women? Deficiency of either vitamin can cause tingling in the limbs and nerve pain. But: negative, negative.
“I’ll refer you to a rheumatologist, just to be thorough. But you know, the pathways in the brain that code for pain are very similar and often related to those that deal with depression, anxiety, and chronic stress.” He pulled out his prescription pad. “For now, I’ll write you a prescription for Gabapentin. It’s a drug that treats nerve pain, neuropathy, and seizures. However, in Europe, it’s also often prescribed to help with anxiety. We’ll see if it helps.” Through research, you’ll find that it has a lot of off-label uses. A lot of drugs do, way more than I would think, especially in ambiguous cases like mine. Gabapentin didn’t help.
The rheumatologist made me cry by referring me to a neurologist, before leaving the room. Then, I stood with his receptionist, shuddering, and when she asked for my birthday, tears started rolling down my face, and I couldn’t stop them. I felt so powerless and alone, as I walked down their hallway, directed to some tissues by the staff. I continued to sob after I left that office, the office full of people forty years my senior with joint pain from decades of obvious wear and tear. I drove myself home, cheeks sticky with drying tears and mind filled with instructions to schedule a neurology appointment and a thousand worries colliding, exploding, dissipating, reforming.
The neurologist told me that I wasn’t showing signs of degenerative disease, and as soon as I exited the waiting room, back through the automatic doors, my body racked from sobs of relief. I had been so scared, and I hugged myself tightly, trying to calm myself down. I was still taking the Gabapentin, and now I had a more official diagnosis that my stress or sadness was causing me literal, physical pain, but that seemed to be better than some of the alternatives. Somehow, both all in my head and not.
Bright yellow capsules. I didn’t see much improvement in my pain, even after I started taking the Gabapentin three times a day. A few months later, my friend Sara, a one-time nursing student, talked to me about my experience with Gabapentin. As she sat in the back seat of my car, I turned towards her and told her how it seemed to amplify the effects of alcohol, which really stressed me out. “Oh, the gabas. We learned about those kinds of meds. They can fuck you up.” Afterward, I learned that she has another friend also taking it for chronic pain, and also that Gabapentin has gotten wrapped up in the ongoing opioid crisis, being abused by those who are denied narcotics by their pain doctors. My mom continues to tag me in Facebook articles about it.
Later, when I went to my other primary care physician for a sinus infection, I also brought up the Gabas: “Oh also, I think I wanna start weaning off the Gabapentin. I don’t think it’s really helped me much?”
“Hmm. What’re you taking the Gabapentin for? Who prescribed that? Lemme see…”
“I think it was Dr. Schlenker?”
“Oh, and you’re taking that for fibromyalgia?”
“Well, the neurologist, Dr. Patel, said it all was caused by stress?”
“And you’ve been to a rheumatologist?”
“Yes, he referred me to the neurologist.”
“Oh, okay. Yeah, well, that kind of ‘stress pain’ falls under what we call the ‘fibromyalgia umbrella.’”
“So I can start weaning off of it?”
“Yeah, that’s fine, especially since you’ve been having luck with the Cymbalta. It was Dr. Schlenker who prescribed that at your last check-up, right?”
“That was Dr. Bird.”
“Dr. Bird… Okay, lemme look at your chart again… Oh, well, you know you’re on a relatively low dose of the Gabapentin?”
“But... I’m taking 300 milligrams, three times a day?”
“Yeah, but we sometimes go up to 900 milligrams, three times a day.” He was writing some stuff down and not looking at me. I thought about 900-mg-three-times-a-day pain. “So, you wanna start taking it once a day? Then, see how you feel?”
Gabapentin never seemed to help during the months that I took it. Maybe I wasn’t on a high enough dose. A coworker said that they didn’t feel any relief until they started taking 1800 mg a day. I’ve found that people with chronic pain often compare experiences with other chronic-pain patients that we encounter, exchange notes on pain days and Rxs. Seek comfort from those who understand. And despite the rheumatologist freaking me out with a brusque and dismissive, “Well, it could be fibromyalgia, but you’re so young,” most of the pain patients I’ve encountered are other college kids and young adults, even though I know my sample is skewed.
But Duloxetine helped immensely. Duloxetine HCl, commonly called by the brand name, Cymbalta, is often marketed as both an antidepressant and chronic pain medication. It was approved by the FDA to treat such things in the early aughts. Manufactured by Eli-Lilly, Cymbalta is sold with commercials portraying middle-aged women in khakis and cardigans and slip-on shoes doing everyday tasks, with animated overlays of nerves firing: “Cymbalta can help.” However, it’s important to note that Eli-Lilly has been involved in lawsuits for understating the possibility and severity of Cymbalta withdrawal’s side effects.
Pinch the Cymbalta capsule between your thumb and pointer. Hold it up to your eye, so the background blurs. They are green and white, or sometimes green and yellow, with esoteric grey numbers printed on the side. They’re considered delayed-release capsules, where you can hear the ingredients rattling around on the inside, like tiny maracas or rain sticks.