Post-herpetic neuralgic (PHN) is occasional or long-lasting nerve damage that remains after someone has had shingles. It is the most common complication of a shingles infection.
Symptoms include burning, stabbing, aching, or throbbing pain, or electric-like shocks.
People with PHN often have to explore and experiment with a variety of treatments to find what works.
My Journey is a series of personal essays about what it’s like to cope with a medical condition.
For the first five decades of my life, I was certain that childbirth pain was the worst pain I would ever experience.
Then, in my late 50s, I got shingles.
By virtue of the intensity, longevity, and downright awful, itchy, stinging, 24/7 annoying pain that stretched from my right shoulder to my right ankle, shingles quickly shot to the number-one position on my “most painful ever” list.
Unlike childbirth pain, which ended as soon as both my babies were born, shingles lingered … and lingered … and lingered. Here I am in my late 60s, and I still feel occasional twinges and aches. To this day, I can’t wear bras with clasps in the back because the metal hooks irritate the very spot where those first shingles lesions appeared.
The initial infection in 2014 was the worst. It was marked by stabbing, searing pain, and constant stinging and itching on my right shoulder blade. I felt zinging pain when a blouse or shirt rubbed against the lesions on my back. Pain when I turned my head, lifted my arm, or rolled over in bed. Pain pretty much all the time for several weeks.
An ancient treatment was the key to my relief.
Quick diagnosis is key
Shingles is caused by the varicella-zoster virus, the same virus that causes chicken pox. It lingers in the body and can recur later in life. Shingles responds best when it’s treated with an antiviral drug (Valtrex, Zovirax, Famvir) within 24 to 72 hours.
Unfortunately for me, my initial pain was misdiagnosed as a strained shoulder muscle because the telltale shingles lesions hadn’t yet popped through my skin. When they appeared 3 days later, I was already past the antiviral deadline but dealing with the most annoying, incessant pain I’ve ever known.
- ValtrexValacyclovir
- ZoviraxAcyclovir
- FamciclovirGeneric Famvir
On a follow-up phone call, my doctor confirmed: “It’s shingles.”
After the lesions disappeared several months later but the pain and itchiness didn’t, I got a new diagnosis: postherpetic neuralgia (PHN). Neither my doctor nor Google searches of medical studies offered much hope of an effective treatment.
Besides the annoying shingles pain and itching, PHN complications can include depression, fatigue, disturbed sleep, lack of appetite, and impaired concentration.
PHN symptoms can stick around
For the next 4 years, the right side of my body ached, including my elbow, knee, and ankle. I’m right-handed, and moving my arm hurt. On a bad day, every step to the train station on my morning commute felt jolting. I couldn’t wear a purse on my right shoulder, so I switched to a backpack.
When I stretched both arms straight above my head, my right hand reached about an inch shorter than my left, non-shingles hand. Eventually, the right side of my body felt like it was wearing a scuba diver’s wetsuit that was at least three sizes too small.
I researched possible treatments and chose those that made sense to me and discarded those that didn’t work.
A neurologist prescribed pregabalin (Lyrica), a medication to treat nerve pain. I took it religiously for almost a year, but the pain and tightness remained, so I didn’t renew the prescription.
The supplement lysine (an amino acid), which online patient forums indicated might help, didn’t change my pain level even after 6 months, so I quit taking it.
Chiropractic adjustments eased the pain somewhat, so I visited my chiropractor every 2 to 3 weeks. I just figured I’d have to live with PHN for the rest of my life.
Acupuncture finally brought relief
Everything changed one day during a conversation with my chiropractor. “Is it possible,” I asked, “that because this is one-sided pain, it has something to do with the body’s meridians?”
He agreed with the possibility and handed me the business card of an acupuncturist to whom he had referred other clients.
I went into my first acupuncture session as a skeptic: I was prepared to be disappointed and go home with the same annoying discomfort and pain.
I was so wrong.
That 90-minute acupuncture session changed my life and immediately eased my symptoms. First, the acupuncturist massaged my shoulder and back. Then she placed rubber suctioning cups on my right shoulder and manipulated the tissue to loosen it and increase blood flow. It felt weirdly great in the exact spot where the first lesions had appeared.
Then she inserted acupuncture needles from my neck to my toes (painless!) and left them in place for about 45 minutes. I felt nothing as I lay face-down on the table, but the experience certainly was relaxing.
After she removed the needles, I dressed and sat with her in her small office to talk about how I felt. I started by reaching both hands above my head. For the first time in 4 years, they both reached the same height.
Wiggling my right shoulder in a circle didn’t hurt. Neither did grabbing my arms behind my back and bending forward to stretch out both shoulders.
I was blown away and told her so.
Then I felt weird physiological symptoms inside my body — like dizzy, clammy motion sickness — and asked to use the restroom. Luckily, it was nearby.
For the next few minutes, I experienced diarrhea and vomiting. I remember the distinct mind-body sensation that my body was purging itself of something awful. I honored the purge and returned to her office feeling like a new person.
Find what works and get the shingles vaccine
I estimate that 80% of my PHN pain disappeared after that first acupuncture session. Better yet, it never came back as severe as the first onset of PHN. Over the next 6 to 8 months, I returned for five more acupuncture sessions. And after each one, another 80% of the remaining pain and tightness disappeared.
Today, my right shoulder aches occasionally. Once in a while, I’ll pop an ibuprofen (Advil) if it gets bad or if I overdo anything. But I feel like I’ve gotten my old body back.
I stretch daily. I use a Chirp Wheel (a yoga-type stretching wheel) every morning to loosen my spine. I get massages every couple of months. I swim laps a few times a week year-round for my health. The backstroke keeps my right shoulder as limber as possible. I walk every day if possible.
The CDC now recommends that adults ages 50 and older should get two doses of the shingles vaccine. But that wasn’t the standard when my initial shingles outbreak appeared at age 58. At the time, doctors recommended the vaccine for people ages 60 and up.
When the newer Shingrix vaccine was approved in 2017, I debated for several years whether to get it. I didn’t want it to reignite the previous infection, and the wording of the patient information sheet was less than reassuring.
But I’ll reassure anyone over 60 right now: If you haven’t yet gotten the two-shot shingles vaccine, run to your local pharmacy and schedule it today. It’s covered by Medicare Part D, and many private insurers cover the cost.
I took the dive in the fall of 2022 and signed up for the two-shot Shingrix vaccine at my local pharmacy. Nothing happened after the first vaccine. After the booster, about 10 small shingles lesions broke out across my right shoulder blade. A final visit to my acupuncturist eliminated the remaining itchiness and pain, and the lesions gradually disappeared.
I know my right shoulder will probably bother me off and on for the rest of my life. It still aches sometimes when I fall asleep at night. The skin on my shoulder blade still itches occasionally.
But acupuncture helped me return to a level of activity as near as possible to what I’d experienced before those tiny, annoying, knife-like lesions first appeared.
If you develop PHN, find what works for you. And if you’re over 60, get the shingles vaccine as soon as possible. You do NOT want to mess with the real shingles virus.
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