What Does Shingles Pain and Symptoms Feel Like?

What Complications Can Result from Shingles?

Patient explaining chest pain to nurse with clipboard
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When I contracted shingles in Spring 2013, it was painful, and unlike anything I had ever experienced before.

Believe me, I searched all over the web, but nowhere could I find anyone else who reported the same symptoms I experienced - not until the burning and rash appeared five days after the original back pain.

I now wonder whether I might have discovered more quickly that I had shingles if I had found another report similar to my own.

I certainly would have seen the doctor sooner, and therefore started taking the necessary drugs quicker. And most importantly, I suspect my experience with shingles would have been shorter and less painful overall.

Thus this article for you. By sharing my experience, I hope someone else with similar early symptoms will find this post and will get to the doctor quicker.

Further, I hope if you've suffered from shingles, you will share your shingles story, too. If we build a bank of experiences, then others will benefit, and that's always the goal of this Patient Empowerment site.

How I Experienced Shingles

It didn't begin with the tell-tale rash, nor did it begin with the burning pain that I saw described in so many other places. Instead, it began with what felt like muscle pain in my right shoulder blade (called the scapula). An aching, as if I had slept funny on that side, or as if I had strained that part of my back.

Yet, I had done nothing to hurt myself. And the pain didn't change as I moved my arm around, or twisted my body, so I knew it couldn't be muscle-related.

Initially, it didn't hurt enough to bother with a doctor's appointment. However, over the next few days the pain intensified. I couldn't relieve it with anything except (too much) ibuprofen.

It hurt constantly, no matter whether I was standing, walking, sitting or lying down. Incessant pain.

About five days after my shoulder blade began to ache, the burning began on my back - in the vicinity of the shoulder blade pain and then north to my neck. It felt like a sunburn, or the burn you get when you've grabbed a hot pan. No rash. Just burning. The burning didn't replace the ache - it was an addition to the achy pain I felt. And that was really the first time in that entire week that I had a hint of what was to come: shingles.

Then came the rash - all over the right side of my body from the center of my trunk, around the right, beneath my right breast, under my arm, and around to the center of my back. Lots of little pimples.

Within hours from when the rash began to appear, I made an appointment with my doctor. She put me on valacyclovir, an anti-viral medication for shingles. She also gave me gabapentin, a generic form of Neurontin (a drug more often prescribed for seizures, fibromyalgia or peripheral neuropathy - all nerve related) which was intended to help with the nerve pain, and 800 mg of Motrin (ibuprofen in a dose 4 times stronger than the over-the-counter dose) which I could take up to three times a day.

Oh, the pain.

My back / shoulder blade pain continued to be constant, but the burning and nerve pain could sometimes make the back pain seem trivial. The nerve pain was like an electric fence strapped to my right side that would pulse painful electrical shocks sometimes 4-5 times a minute.

I took the anti-viral religiously for the entire 10-day prescription. It did seem to mitigate the rash over the next couple of weeks. But it didn't touch the pain.

I was told shingles would last three to four weeks. In week five, as I still suffered shingles pain, I returned to the doctor.

Early on, I never really knew if the gabapentin was helping with the nerve pain (that electric fence) because I was told to take it only once a day when it was time for bed. But in five weeks, when the pain had not yet subsided, my doctor determined I might be one of the 20% of shingles patients who ends up with long term pain, called post-herpetic neuralgia. Post-herpetic neuralgia can last from weeks to years to a lifetime. She re-prescribed the gabapentin, upping the dosage to three times per day.

Now, almost six weeks from the onset of that deep shoulder pain, and taking gabapentin three times per day, the pain is mostly under control. The rash is gone completely, although I still have some itchiness. I have no more of the electric fence pain. The shoulder / back pain is a rare dull ache late in the day, easily controlled by a standard dose of ibuprofen. The gabapentin does make me a little sleepy, but I can tolerate it. I also have some ringing in my ears, a reported side effect of the gabapentin, but I can ignore that quite easily, too.

As mentioned earlier, I hope others find this story and that it helps them get diagnosed more quickly. Also, for those of you who are diagnosed and find the pain does not subside the way you expect it will, I hope my follow through will help you.

And now it's your turn! What is your experience with shingles? Please take a moment to help others learn more about the experience and shingles and what they might expect.

• Learn more about the diagnosis, treatment and vaccine for shingles.

• Learn more about why we see shingles vaccine ads on TV.

• Read my report about not being the perfectly empowered patient (because I should have gotten the shingles vaccine) in "Do As I Say and Not As I Do."

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