Shingle Hell, Shingle Hell, Shingles All The Way!
My fearful encounter with chickenpox's direct-to-DVD sequel
“The aim of the wise is not to secure pleasure, but to avoid pain.”
-Aristotle
“Life is pain, highness. Anyone who says differently is selling something.”
- William Goldman
Spooky fog blanketed Golden Gate Park as we left Nightlife at the Academy of Sciences. My friend Jennifer asked me if I was planning to write a Halloween post. I said no. While I plan my content multiple months in advance, I don’t often do themed posts, preferring follow the eddies and tangents of my ever curious mind week-to-week, ranting away like a younger Abe Simpson.
She said I should write about what scares me. I sat with that invitation, trawling through my favorite horror films and phobias. I am indeed terrified of getting run over by an indifferent Tesla on my bike or getting gobbled up by a gigantic shark, but I’ve already written about these topics. Then I remembered the nightmare that visited me during the winter of last year.
It was the worst pain of my life. That likely sounds hyperbolic or cliché. To be more specific, the right side of my upper back alternated between feeling like it was being scalded with hot water and shocked with electricity. These two deeply unsettling sensations took turns tag teaming their way up and down a crescent of my back, which currently looked like acne collaborated with poison oak to create a new rash in the worst crossover event since Batman v. Superman: Dawn of Disappointment. Just when the burning feeling went away, the sharp shooting and stabbing took its place. In this trembling state, my brain could form no thoughts that weren’t related to the pain.
I grimaced and rolled onto my right side to look at my phone. It was 3:30 am. Falling asleep was officially out of the question. No sleeping position was comfortable because of the agony rippling through my upper back and under my armpit. It had been a long night so far, but the next few hours looked to be even longer. Baffled by the blinding intensity of the pain, I opened a web browser on my phone and began to trawl the internet for answers.
6 days prior I felt a pinching sensation in my upper back. I assumed it was a muscle pull. To address it, I slathered on some Icy Hot. The next day, as I left the shower, Alexis pointed out I had a rash on my right shoulder blade. I assumed it was an allergic reaction to the Icy Hot.
As the week went on, the rash began to spread. The irritation was noticeable but manageable. I developed half a dozen armchair doctor theories for what was going on from poor computer posture to gratuitous amounts of Spikeball. I tried some weird looking neck exercises that I was convinced would address the pain. Otherwise, I went about my life, attending a dinner party at my friend’s apartment by the Panhandle, heading to Kona Club for a scorpion bowl, and watching the NFC Championship games at home. Aside from this occasional pins and needles sensation I couldn’t quite place, I was blissfully unaware that I was about to rapidly summit the Mt. Everest of physical and mental discomfort.
By the time the eerie glow of pre-dawn outside matched the wan color of my iPhone screen, I’d arrived at a theory that I didn’t like one bit. The breakthrough had come when I found a generously in depth blog post about a work connection’s experience with shingles. It mapped onto my symptoms quite closely but left me feeling confused and worried. I’d always thought shingles was something that older people came down with. The degree of debilitating suffering this diagnosis would entail seemed truly terrifying. One of the many commenters on the post described it as:
“The most excruciating pain I have ever experienced. I’ve had 3 children, natural child birth with no medication. The shingles pain far outweighs the pain of child birth!!”
As the sun came up, the truth sunk in, and I began to feel truly small and afraid.
Shingles is caused by a virus you probably have living in your spinal cord right now. If you’ve ever had chicken pox, the herpes zoster virus responsible for it never fully goes away. Instead, it lives rent free in the nerve roots of your spine. Sometimes later in life, for reasons they still don’t quite understand, it breaks out of the confinement of your immune system and wreaks havoc. This viral revenge tour makes itself known via an excruciatingly hideous and loathsome skin rash, a metaphor for the ill-advised sequel that this disease truly is.
While the most visible symptom of shingles is the trademark splotchy rash, calling it a rash undersells the severity of what’s going on. Since the herpes zoster virus attacks your nerve roots, the pain you experience during shingles is nerve pain, which causes uniquely intense shooting and stabbing sensations that are notoriously hard to treat with conventional painkillers.
Since the virus attacks a particular stretch of track on your neurological subway lines (what scientists call a dermatome) you can you fairly easily identify which nerve root your shingles is based in by where exactly the rash shows up. My shoulder blade, armpit, and pec pain indicated a T2 or T3 outbreak. Shingles can happen in any of your body’s 30 dermatomes, a roulette of unsightly rash and stabbing pain locations from your head all the way down to their toes. You can even get shingles in one of your eyes, which is apparently as horrific as it sounds and can cause lasting problems with your vision.
In the morning, Alexis drove me to Kaiser in Oakland for the earliest appointment I’d been able to find online. Waiting in the examination room I felt as fragile as the crinkly paper I was sitting on. My primary care physician took one look at my back and said “oh that’s no allergic reaction” with the certainty of Hooper in Jaws, eyeing a hideous cadaver and declaring: “this was no boating accident.” So, on January 31st 2022 I was given the diagnosis I had been dreading.
Shingles isn’t very treatable— your main option is to mitigate the symptoms and manage the pain as the virus runs its course. To this end, my doctor handed me a prescription for three things. The first was a heavy duty opiate to address the pain. The second was an antiviral. The third was a nerve blocker I’d never heard of called gabapentin. I was most intimidated by the opiate, and thought nothing of the other two.
The Kaiser pharmacy was packed despite the odd hour. The serpentine line was filled with faces with exhausted and stressed eyes and tightly masked mouths. While I waited for my prescription to be filled, I called one of my college best friends to update him about what was going on. Usually a chipper texter, it wasn’t like me to call a friend out of the blue to just tell them I was in a lot of pain, but doing so felt both necessary and comforting.
Back at home I took the first round of my many medications, and nestled into a miniature pillow fort I’d constructed on the couch. Then I put on the 6th Fast and the Furious movie, and tried to relax. Partway through an interminable chase down a seemingly endless airport runway I finally, mercifully fell asleep.
I woke up to find that Gal Gadot’s character had died, but everyone else had somehow survived a quantity of explosions fit for gender reveal party organized by Michael Bay. Vin Diesel celebrated his familial triumph with the requisite barbecue. As he downed coronas, I downed more pain meds, nerve blockers, and anti-virals. I suspected that my foreseeable future would involve many more movies, meds, and melancholy naps. This was only the beginning.
The only pleasant part of the first week of singles was that it gave me a legitimate excuse to cancel everything and focus on taking care of myself. I spent my days on the couch in a medicated haze. When I was awake, I caught up on movies. I rewatched all three Toy Story movies, sobbing uncontrollably at the designated scenes in 2 and 3. I finally saw Danny Boyle’s Sunshine, staggered by its brilliance and wondered why it was such an underrated sci-fi film. I watched Encanto twice in one day, both times turning into a tearful puddle of emotions when “Dos Orugitas” played at the end. I didn’t know if it was the pain, the medication, or my overall fragile mental state, but watching a magical musical Colombian family repairing intergenerational family trauma struck a nerve deeper than even the Zoster virus could. While the opiates brought the excruciating pain down to tolerable levels of discomfort, Encanto may have been the most healing thing I consumed that week.
The power inversion of being really, truly unwell was equally humbling and emotionally moving. While I entered the month of January ready to kick my physical and mental health into a new gear after a few aimless and overwhelming months of unemployment, I left it unable to do anything besides slowly and painfully commute from the bed to the couch to the bathroom and back again.
The flip side of being officially not okay was getting to admit it to the world and realizing how many people cared about how I was doing. Alexis really stepped up to make me soup, bring me tea, and generally make sure I was doing what I could to get better, even if that was just continuing my sluggish existence as a blanket-clad Jabba the Hut on our West Elm sectional.
People that wouldn’t normally text me every day did. People that wouldn’t normally call me just to talk did that too. I even got an unexpected call from my grandpa, who offered me his sympathy after first saying “Shingles?! That’s an old person disease,” which would not be the last time I heard that refrain.
In addition to the necessary medications, I threw pretty much every other type of remedy, scientific, homeopathic, and otherwise at this disease. Some were better ideas than others.
I drank dozens of cups of lemon balm tea, which The Healthy Maven swore had helped her case of shingles. I ordered a lemon balm cream to put on the rash while I listened to the Encanto soundtrack. It smelled amazing and felt nice so I began to use it instead of the cream Kaiser had given me. Only later would I realize that the Kaiser cream was a powerful steroid that likely would have reduced the rash size much quicker.
In addition to the painkillers, antivirals, and nerve blockers, I also took L-Lysine, an amino acid that was supposed to reduce the spread of shingles as well as alpha lipoic acid, which my physical therapist told me was good for nerve pain. I started taking Psyllium husk supplements to counteract the constipation the painkillers caused. I truly can’t say which of these did anything, but it felt equally empowering and unwieldy to be consuming a small pharmacy’s worth of pills and potions each day.
I became obsessed with understanding this disease. If I couldn’t have physical control over it, I would at least master it cognitively. This led me to the shingles subreddit: r/shingles, perhaps the weirdest and most informative internet subculture I’ve ever seen.
Posts covered useful discussions of pain management, weighing in on if a rash was shingles, somewhat masochistic documentation of horrific rashes progressing from bad to worse, to some variation of “when will this hell end?” A lot of younger folks like me felt betrayed by their otherwise healthy 20 and 30 year old immune systems for allowing this to happen. I learned that cases of shingles among the young and healthy are on the rise but the scientific community is unsure as to why. A surprisingly large chunk of the subreddit was convinced that the recently released COVID booster had caused their shingles outbreaks. Trawling through this user generated data-base of every possible thought one could have about shingles made me feel reassured, worried, connected, and alone all at once.
The worst phase of shingles was weeks 2 through 6. After one week of being a heavily medicated couch creature, I was well enough to sort of live my life, but not well enough to really enjoy anything. I went a month without exercising, which made my physical and mental health slide into a molasses-like malaise. Some activities like Spikeball were surprisingly doable. I thought yoga class would be low impact, but it caused my shoulder to hurt and made me self-conscious about the shark-bite shaped red crescent visible beneath my tank top.
I could see friends during the afternoon and evening but needed to carefully monitor my pain levels, ducking out to medicate periodically. Alcohol and caffeine both seemed to make my symptoms worse, so I avoided the former entirely and swapped out coffee with tea. A few beers at our Super Bowl party reminded me of my old chatty self, but also left me feeling weak and achey afterwards. On a night out with Alexis, I tried eating a pot gummy to calm the pain and enjoy myself, but instead of relaxing me it just made me incredibly aware of the creepy crawly sensations vibrating up and down my shoulder blade, the THC making it buzz like agonizing TV static. I complained and begged her leave the bar we were at and drive me home with a whiny intensity I haven’t done since I was in elementary school.
Pain management became the only constant of my life. Every waking hour was in some way related to controlling my discomfort.
The days gradually became more doable. Once I was fed and moving I had a bit more energy and could putter about the house and make my own meals again. The nights were the worst. Unless I could beat back the pain sufficiently by the evening, I couldn’t physically and mentally relax enough to go to sleep, so I’d rest poorly, spiraling and backsliding.
Terrified of opiates and hyper cautious about dependency, I set up a careful timetable to gradually taper off of them. I reasoned the gabapentin was less important to perfectly time and dose. Buried beneath the calming embrace of the painkiller, I was honestly unsure what the gabapentin did or if it had any effect at all.
I let my opiate prescription lapse and decided to refill the gabapentin. However, when I went to refresh my prescription on the Kaiser app it didn’t work and I began to panic. I realized I couldn’t easily get more gabapentin and the idea of being off of it and feeling the full weight of the pain again felt like too much to manage.
I later found out this was due to a frustrating payment lag between my COBRA coverage and Kaiser Permanente’s billing department, but in the moment all I knew was that this drug might not be available, making me feel like I was on the edge of tears until I resolved the issue.
When I headed back to Kaiser to pick up more gabapentin I felt a small but palpable sigh of relief once the cylinder was in my hands again. Determined to find out what these mysterious pills were actually doing to me, I tried moving around the dosing schedule. I realized the main thing it did was allow me to sleep. So I began to take one in the morning and two at night. However, I told myself that after this bottle was done I would go off gabapentin for good. The pain was finally manageable and I was ready to be back to my unmedicated self. I finished the prescription and waited to see what sensations awaited me on the other side.
The first night without gabapentin I was greeted by the worst insomnia of my life. I fell asleep at eleven only to be wide awake two hours later, utterly unable to fall back asleep. Recognizing the lost cause and not wanting to wake Alexis with my tossing and turning, I exiled myself to the coach and decided to try watching Lil Dicky’s comedy show: Dave. It might have been my desperate and delirious state, but I found it funny and surprisingly heartfelt. I fell asleep around eight am partway through the first season. When I woke up around ten thirty it dawned on me. I was suffering from severe withdrawal from the gabapentin, which I’d unknowingly become dependent on.
My research sent me to the gabapentin subreddit, r/gabapentin, which took the crown from r/shingles as the oddest subculture I’d inhabited in this trying few months. Like the informative torture chamber that had been r/shingles, this surreal subreddit taught me a disturbing amount of information very quickly. It turned out that gabapentin was a very powerful narcotic that was prescribed for a range of ailments including shingles, anxiety, and opiate withdrawal. Vets even prescribed it for dogs dealing with seizures. User experiences with gabapentin included despondent monologs about horrific withdrawal, accounts of lifelong dependency, and glowing endorsements that these tiny pills had stopped crippling anxiety in its tracks.
Whether gabapentin was a cure worse than the disease or a wonder drug was open for debate but my main takeaway was that coming off of it was notoriously difficult. I’d made a huge mistake in stopping cold turkey. I both cursed myself for not reading the magazine’s worth of side effects and counter indications Kaiser had sent me home with and resented the pharmacist for not bothering to mention that I might want to have a structured plan for coming off my this woefully under-understood drug. I also started beating myself up for not taking these medications more seriously.
I briefly considered going back on it to be able to sleep once more, punting dealing with my withdrawal to next month, but the horror stories on the subreddit convinced me that I didn’t want anything to do with this drug unless I had no choice. Insomnia was better than a potential lifelong dependence. After five brutal nights I was able to fall asleep unassisted once more. Sleep, the first thing wrecked by my shingles outbreak, was also the last thing to be put back into place. Then, just like that, shingles slid beneath the water of my consciousness and swam silently away like an enormous, powerful shark.
My unexpected gabapentin withdrawal was the final boss fight of my shingles experience. While the scarring from it lingered on my upper back for close to six months, that too eventually went away. Now, more than a year and a half later, the whole experience feels like a bad dream.
The notion that something this vile and disruptive was lurking just beneath the surface of my spinal cord rattled me. Given that the biggest known cause of shingles in young people is stress, I had to dramatically rethink how I was treating my mental health. The idea that this painful sequel can itself get sequels (about 5% of the population gets shingles more than once) still haunts me. I felt profoundly lucky that I’d dodged postherpetic neuralgia, a circle of shingles hell where the pain lingers for months to indefinitely after the rash disappears.
This soul-crushing affliction made me realize how supportive my friends and family are. As men, we’re socialized to suffer in silence and I’d long struggled to be visibly in pain around others. I found something oddly liberating about just admitting to the world that I was not okay for once. There was even some humor to be found— my friend Lauren heard through the grapevine that I had shingles but mistakenly told people I had scurvy.
After 5 exhilarating and exhausting years at a startup and as many months of restless self-doubt, shingles ended up being the “hard reset” I never would have asked for but on some level needed. It was the moment I realized that I quite literally could not run from myself or my suffering. My only choice was to slow down and heal.
Staring this intensely at the mosaic of physical sensations that make up being alive has also changed my worldview in a profound way. Pausing alcohol, reducing my caffeine intake, and suddenly being reliant on a suite of medications to get through each day made me confront how many interlocking dependencies and addictions undergird most of human existence in the modern world. From caffeine to alcohol, antidepressants to painkillers, you can’t travel far in modern America without confronting your own or someone else’s reliance on a mind-altering substance. Many of these exist to distort, disrupt, or distract from the basic pains of being alive.
For as much as we claim to be at war with drugs, my time having shingles made me confront how much we are actually intensely, deeply in love with them. Our healthcare system, economy, culture, and social lives are all dependent on and interwoven with powerful psychoactive substances. For every illegal narcotic we demonize, there’s just as many legal ones we worship, rely on, exploit, and profit off of. The beer, wine, and liquor that power our dates, celebrations, and socialization are held in extremely lucrative symbiotic check by the caffeine that fuels our commerce and quixotic quest for productivity. We imprison hundreds of thousands of people for selling some drugs while making a select few people billionaires for manufacturing others, which we relentlessly advertise to our population that’s permanently and profitably unwell. At this point the legal opiates appear to be just as bad as the illegal ones. It’s dizzying. Is the real villain the substances, the people that profit off of them, how we selectively police their use, or the fact that so many of us increasingly struggle to stare directly at unmedicated reality?
The intensity and hypocrisy of all this felt personal for me during my bout with shingles. Sprinting away from an avalanche of pain only to end up fleeing withdrawal made me viscerally feel the desperation undergirding our tortured dance with self-medication. However much our society claims to hate drugs pales in comparison to how much we all are terrified of being in pain. The only thing we fear more than addiction is suffering. The diabolical truth, of course, is that they are one and the same.
Postscript: If you ever have weird nerve pain paired with a rash, don’t wait like I did. Please see a doctor as soon as possible.
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Illness is humbling. Loved your account of how you managed and what you learned.