A Brutally Honest Shingles FAQ

I've learned that a lot of people in the ankylosing spondylitis community have experienced the incredibly disgusting, horribly painful, grossly unattractive plague that is shingles. So have I. And so below, a FAQ about my experience and how I dealt with it.

Does AS cause shingles (or Herpes Zoster)?

No, AS does not cause shingles, but it can increase your risk of getting it. Why? Because the shingles virus hides in the body and comes out when the immune system is suppressed.¹

So what the hell is the shingles virus? It's been hiding dormant in my body? When you get the chickenpox (or the varicella-zoster virus), usually during childhood, it sort of hides dormant in your spine and can become reactivated later, leading to herpes zoster (HZ), or shingles.²

What is shingles all about? Isn't it just a rash?

The shingles is a viral infection that does cause a rash. But it's the searing nerve pain beneath the rash that seriously hurts for some people. If shingles occurs on the face, it can cause blindness. Shingles can cause postherpetic neuralgia (PHN), which is pain after the rash fades. Shingles can cause depression as well.²

Who gets shingles? Isn't it just for elderly people?

If you’ve had chickenpox, you could get it. It affects about a million people every year — and while half are over 60, young people get it too, especially the immunocompromised.²

Can you get it again? No, right?

Yep. Totally possible.²

There's a vaccine, right?

Yep!²

What was my experience like?

I walked home from the pool one night feeling as though I had maybe pulled a muscle. My ribs hurt and I thought perhaps I hurt myself in the water. I have an AS-riddled body, after all.

By the time I got home, it felt like my ribcage was very tender; I am prone to nerve pain here and there (which my doctor hasn't quite diagnosed yet) but this was more intense. My partner thought my ribcage looked swollen and he said it felt hot to the touch. In the morning I woke up feeling worse, and called my rheumatologist, worried. She asked me to take a photo — and sure enough, it had a few red spots; they were barely noticeable.

"It's shingles," my doctor wrote back immediately. I guess she'd seen this many times before. About an hour later, a rash bloomed across one half of my rib cage (just the right side). Pain struck a few hours later. It became all-consuming, and I felt as though I had the flu. I was given antiviral medication and urged to start it immediately or else risk a very bad case of shingles and post-herpetic neuralgia (intense pain after shingles go away, sometimes for years).²

I was bedridden for about a week and the intense pain lasted about 3-4 days. The rash lasted about 3 weeks.

How did it feel?

Not gonna lie. It felt like being burned, stabbed, and cut all at the same time — and I mean that with every fiber of my being. It is like having a massive paper cut under the surface of my skin, which is being set to fire, and then doused with salt. It throbs, stabs, and stings. Sometimes the pain goes away entirely, and other times it's enough to send me into a sort of spasm.

It only happened once, but at its worse, I thought to myself, "I won't live through this."

What are the symptoms?

Before the rash, a feeling of tingles or pain may occur. The rash usually occurs in a single stripe across one area of the body. It can be more widespread too. It may also occur with fever, chills, and stomach issues.

Have you had the shingles due to being immune-suppressed?