"Some women are lost in the fire. Some women are built from it."
—Michelle K.
The Fire Within Blog
Shingles and My Ten-Year-Old Bottle of Vicodin

A few years ago, a friend who’d been through a rowdy case of shingles tried to spook me.

“You of all people, Cynthia, have to get your vaccine. You couldn’t go through this level of pain with all you’ve got going on,” she said.

Yeah, yeah, I thought, normies who don’t live with the flame-broiler called Complex Regional Pain Syndrome can’t hack the small stuff.

While Laura’s warning was well intentioned, I decided to skip the shot because I’d heard it was a real ass kicker. That, and I’m  already an Olympic-level pro at neuropathic pain. I’d be fine without getting the shingles vaccine.

I bet on the wrong horse.

In early August, a mysterious pain on the side of my left leg woke me. I’d never had aching pain that hurt so much, and rousted my partner John in alarm. Muscling through my work day, the ache turned lava hot while I moaned and yelped. By bed time, I was writhing and screaming. No position offered a smidge of relief and I ended up pretzelled against the foot board after only a couple hours of sleep.

I couldn’t make heads or tails of this new pain. It burned something fierce like CRPS, but was unfamiliar. Terrified, I pointed out to John the places on my thigh where piercing pain, like striking arrows, were erupting. Worse, there was a “hatchet” in my groin. 42 years into CRPS, could this be a different kind rearing its ugly head? The new version came complete with a high fever and wipe-out fatigue.

No amount of my old standby’s – rest, heat, distraction, kitty cuddling – offered relief. In fact, the pain kept amping higher, rendering me useless.

Soon, a bright-red, ghoulish rash appeared and began to spread by the hour. It felt like I was starring in my own horror film, no pause button on the remote.

The next day it hit me. This is goddamn shingles and I scooted off to an immediate care clinic. I was disappointed to get a young male doctor and, true to form, he dismissed my symptoms by announcing that I’d burned myself with a heating pad. His only advice was for me to take a picture of the rash for reasons unknown.

That night, while the rash continued to march on, the redness turned to bubbling blisters, and the next day I found myself back at immediate care. This time I hit the jackpot, as a skilled and caring female doctor took about three seconds to diagnose shingles. Livid over the previous day’s dismissal, as treatment time was now of the essence, she firmly instructed me to immediately pick up anti-viral medication and start them as soon as I got home.

Before leaving the room, she gave me a major fright. She looked into my eyes and told me that my shingles might become chronic, especially with my long CRPS history. At that moment, I had no doubt I was in for a world of unchartered hurt.

For the next two months, except for doctor appointments, I lived between my bed and the couch, surviving one minute at a time. The blisters spread from the top of my thigh down to my knee, and up onto my left buttocks. Mixed with exquisite pain were patches of numbness, and my dermatologist gently warned that this might indicate nerve death.

My allodynia was so severe I couldn’t bear anything touching the rash, and the never-ending pain kept me awake during the nights. I despised hearing from doctors, again and again, that mine was the worst case of shingles they’d seen. Their biggest concern was that the rash would spread to my right side, in which case they suspected it would travel to my eyes and I’d likely lose my sight.

The pain got so bad, John pleaded with me to take a Vicodin from a 10-year-old bottle he’d asked me to keep, just in case. In the past, this was unthinkable as my primary physician warned me that, due to being on a benzodiazepine, this mix might suppress my breathing to the point of death. Despite that, I didn’t hesitate and got my first taste of blessed relief.

Soon my frantic pain doctor directed me to up my dose to four 5mg Vicodin tablets a day. Scared due to being opioid-naïve, I went on three instead. I could survive the pain then, but had zero quality of life. During this miserable time, I gulped laxatives to keep the pipes flowing, and hobbled no further than our condo balcony for a ten day spell. I was slowly cancelling my life and couldn’t even tolerate a visitor.

I ruminated over worst case scenarios. What if my pain stays chronic at a level ten? Also, my dermatologist told me I might be scarred forever.

Even if my pain improves, I thought, could I ever show my disfigured leg in public? Upon seeing the angry rash, my sister-in-law innocently chirped, “You can’t get in the pool with that, Cynthia. It’ll frighten the other swimmers.” I knew she was right and wanted to sob.

Mercifully, in the last month, the pain and rash (four tubes of scar gel and counting!) started to retreat, bit by bit. With great trepidation, I successfully weaned off the Vicodin, but sure enough, I’m left with post-herpetic neuralgia, the chronic pain I so dreaded.

While my numbness and allodynia are improving, the hatchet pain in my groin hasn’t dissipated. I’m over-the-moon happy to be swimming again with no problem, but for the first time this former ballerina is less than limber on her left side, which makes Pilates and Feldenkrais movement therapy formidable challenges.

While there are no guarantees, I remain optimistic for total healing because I take such good care of my body and mind. Three cheers for self-care!!!

Hands down, shingles at its apex was the worst pain experience of my life, and because of my CRPS, it was far, FAR worse than what a healthy person would have experienced. My doctors and I suspect the immunotherapy I took for cancer care over two years ago played a major role in getting shingles now, as it’s been the root of three prior serious pain complications.

While I can’t go back in time and take Laura’s sage advice about getting that almighty shingles vaccine, I can share my cautionary tale in hopes you’ll do so. With a caveat, I shuddered to learn the vaccine – which I’ll be getting in February – isn’t full proof. Inoculated folk can still get shingles, but those cases are rare and usually less severe, which is especially beneficial for those already wrangling with neuropathic pain.

While I’m slowly moving my shingles nightmare (albeit with PTSD) into the rearview mirror, I’m haunted by a horrific question. Because my pharmacy refused to fill my pain doctor’s new prescription for Vicodin, what would have happened to me if not for my 10-year-old bottle?

In the grips of the worst pain and torture I’ve ever experienced and the absolute hopelessness of relief, in desperation what might I have done?

I don’t know, but am glad as hell I didn’t have to find out. My god, where is the mercy for people with pain?