“I Got Shingles—at Age 36”

If you think this condition only affects older people, guess again.

by Sabrina Skiles Patient Advocate

Yes, I had shingles. Yes, I’m 36. Yes, that’s really young to get it. But I got it anyway. Did you know that almost one out of three people in the United States will develop shingles in his or her lifetime? Now that I’m part of that statistic, I figure if I can do anything to help others avoid joining my little group, I will. I’m here to give you the lowdown on getting shingles in your 30s and what I did to help with the itchiness and extreme nerve pain that accompanied it.

What Are Shingles?

According to the Centers for Disease Control and Prevention, shingles is caused by the varicella zoster virus, the same virus that causes chickenpox. Here’s what happens: If you had chickenpox as a kid, you probably got better after two or three weeks, and figured you’d kicked the virus right out of your body. Not so. The varicella zoster virus never left your body—it just went into hiding. After years of staying dormant, the virus can reactivate itself in the form of shingles. Usually, that happens in older people, as you lose immunity with age and your body has a harder time fighting off diseases you may once have been immune to. How crazy is that y’all?! I had no idea.

Because a weakened immune system sets you up for a shingles outbreak, people who have a medical condition that keeps their immune systems from working properly (like certain cancers) and people who receive certain immunosuppressant drugs are at higher risk. That might be why I got shingles: For those who are new here, I have been living with psoriasis for the past 25+ years and I also had breast cancer and underwent chemotherapy, radiation and am currently on hormone therapy treatment.

shingles rash in back
iStock

Discovering the Rash

If there is a “good” thing about having a chronic skin condition, it means that when a new plaque or lesion shows up on my body, I am very aware of it. This new lesion was different. As I was sitting at my home office catching up on my emails—sound familiar?—I kept reaching around to scratch this incessant itch in the middle of my back, on the left side. But it wasn’t just an itch that I noticed. A weird nerve pain and tingling was accompanying it and that was extremely unusual for my psoriasis plaques.

Later that night I asked my husband to look at it and see what was going on. I asked him if it looked like my psoriasis patches and he said yes—and took a picture so I could see it, too. Though it may have looked like it to my husband (red and bumpy), it wasn’t flaky, at all—a main attribute of my psoriasis plaques.

So I went through my mental checklist that I review whenever a new plaque shows up. I hadn’t been using any new soap. I didn’t change my laundry detergent. (By the way, those are two basic scenarios your derm will ask you when you see them for new lesions or plaques.) And my diet was the exact same.

Something was up.

The first symptom I noticed was itchiness which started on the left side of my back, right where the spine is. Still figuring it was just a new psoriasis plaque, I didn’t think too much of it. Then the itchiness progressed later that day and was soon accompanied by tingling, burning, and nerve pain. Right then and there I knew it wasn’t psoriasis. Never in the 25+ years that I’ve been living with the condition had I ever had burning or nerve pain.

I called my dermatologist the very next day and told her that I had a new lesion that was being accompanied by nerve pain. Her office got me in for an appointment within the hour (thank God for cancellations!). By this time, some new red lesions were starting to show up underneath my left breast area. After looking at these two spots, my derm didn’t hesitate. “It’s shingles,” she said.

“Shingles?” I remember asking her. “Really?”

Shingles had been nowhere on my radar. I honestly thought shingles was just a disease that “older people” get. I was totally wrong. My dermatologist explained that the way the lesions were presenting themselves along my spine and then under my breast was a clear sign of shingles. In fact, the rash usually occurs as a single stripe that starts at the spine and works its way around either the left or right side of the body, according to the CDC. (It can also sometimes appear on one side of your face.)

She asked me when it first started. I mentioned two days ago. It was really good that I came in, she said, because the antiviral medication, which reduces the amount of spread and side effects, is vastly more effective if you take it early on in the course of the virus.

Adding to the Pile

I’m not going to lie: After hearing my new diagnosis, I started crying. I guess after everything I’ve been through with psoriasis and then breast cancer, I just felt like I couldn’t catch a break.

Thankfully, my derm was incredibly understanding and just let me cry instead of hurrying me out of the room. She explained she was going to start me on valacyclovir (Valtrex), a common antiviral medication used to treat shingles. My first thought was that I needed to talk to my oncologist and ask if it was OK to take another medication while also on my hormone therapy medication. I expressed my concerns to my dermatologist who assured me it would be fine to take the two together but agreed that I should confirm with my other doctor first. (It was fine.)

Meanwhile, I was also really curious about the intense nerve pain I was having. I had no idea nerve pain and shingles were interconnected, but my derm explained that because the virus presents itself along the spine, it is a common symptom.

I was also worried about my kids. The last thing I needed in the middle of COVID was my children getting sick. My doctor asked if the kids had had their chickenpox vaccines. Immediately I said yes and asked, “Why, am I contagious?” And she said, “The virus can be contagious to those who haven’t had the chickenpox vaccine.”

The first thing I did when I got home was to check my kids’ medical records. My five-year-old had both shots. My three-and-a-half-year-old had only one out of the two shots. Of course, my mind started racing. I called his pediatrician in a panic. That is what it’s like to get shingles as a young mom with two kids. I told the pediatrician the situation. And she said it most likely wouldn’t be necessary to have him come in to get the second shot and he should be fine. She just mentioned to keep any blisters covered till they had crusted over.

Diagnosis, check. Kids, check. Time to get my side effects under control.

Surviving Shingles

Yes, I survived, and you will too, even though it might not feel like that sometimes. Honestly, my husband probably thought I was being melodramatic, but the nerve pain was that intense.

Along with the antiviral meds (three times a day for 10 days), to help with the nerve pain, I literally had an ice pack on my back throughout the entire day for roughly a week. No lie. That was the only thing that would help. Thankfully my brother-in-law had something similar to this Reusable Therapy Gel Wrap that I borrowed with four small ice packs that I would rotate throughout the day. It was incredibly helpful. I tried a heat pack, but the heat only made the pain worse.

I relieved my mild itchiness by using this Tubby Todd All Over Ointment. I keep this around for my son's eczema and my psoriasis, but now I can add shingles to that list! This, along with my OTC pain relieving medication, helped keep things in check. But still, the first week and a half, the nerve pain was so intense that I could barely sleep. I had some hydrocodone left over from my chemotherapy treatments and asked my doctor if it would be OK to take it at night for the pain. And she gave me the all clear. (I mention this only to highlight just how bad the pain was.) The pain subsided a little after the first five days and I switched to Extra-Strength Tylenol and Aleve. Please talk to your doctor should the pain be that intense. You do not need to “suffer through this.”

Because shingles is highly contagious to those with weakened immune systems, including those undergoing chemotherapy, and because I go to the local cancer center to get my treatments, I did have to postpone my monthly ovarian suppression injection that I get as part of my breast cancer treatment.

Three weeks after the initial diagnosis, I finally starting to feel like myself again with little to no nerve pain. It’s now been one month and three weeks since the diagnosis and the lesion on my back has slightly faded but is still there. The lesion underneath my breast has faded to a dull almost freckle-like spot.

As I shared my journey on Instagram, I can’t tell you how many messages I got from other adults under the age of 45 that had experienced shingles and they said the nerve pain was the worst, too. Some thanked me for sharing my journey because it gave them something to look out for. And others said they had a new understanding for when their parents went through it.

As for what I learned? I learned that you are never too young or too old to get a disease. If something doesn’t feel right, speak up. Don’t just chalk it up to “I’m just getting older,” because the more we listen to our bodies, the better our chances of getting healthy—and staying that way.

Sabrina Skiles
Meet Our Writer
Sabrina Skiles

Sabrina Skiles is a lifestyle and psoriasis blogger, who was also diagnosed with breast cancer just two days after her 35th birthday. She created her blog, Homegrown Houston as a lifestyle resource for millennial women and those living with chronic conditions. She shares daily inspiration from health and wellness, motherhood and marriage to managing a chronic disease while living a stylish life. Sabrina is also a volunteer mentor, coach and social ambassador for the National Psoriasis Foundation. You can find her sharing #chemolife and psoriasis tips while living a stylish life on Instagram @sabrinaskiles.