One woman who underestimated the risk of shingles discovered how painful and far-reaching the virus can be. Seniors Guide writer Terri L. Jones shares the story along with an essential health overview.
Patti Coleman didn’t know anyone who’d had shingles and didn’t even know much about it, although she had worked in healthcare as an occupational therapist her entire career. So, when her doctor recommended that she get the new Shingrix vaccine that came out the year she turned 52, Coleman brushed off the doctor’s recommendation. She figured her chances of getting the disease were pretty slim.
But then a few weeks before she turned 61, Coleman developed a strange numbness on one side of her forehead. At the time, she had a bad cold as well as a tooth needing a root canal. She thought this sensation, which a day later spread to her eyebrow and scalp, must somehow be related and began to google connections. While she wasn’t successful in tying the three problems together, when she eliminated “congestion” and “tooth pain” from her search, “shingles” appeared on the list of possibilities. Suddenly, she remembered the tiny, red bump that had appeared in her eyebrow.
“It was then that the lightbulb went off and I ran out the door to the doctor,” Coleman explains. Her physician diagnosed her with shingles.
What is shingles anyway?
Coleman isn’t alone. Because shingles isn’t life-threatening, many people don’t take the disease seriously, Dr. Kristin Christensen, an internal medicine specialist affiliated with Penn Medicine, told health writers Barbara Stepko and Rachel Nania. Most also have limited knowledge of what the disease is and the impact that it can have on their life.
You don’t catch shingles from someone else – it occurs when the chickenpox virus already in your body reactivates. However, a person with active shingles can spread the virus through contact with open blisters to someone who has never had chickenpox (or the vaccine), causing that person to develop chickenpox, not shingles.
“Our body gets it [the virus] under control, but it never fully goes away and lives in our nerves,” Dr. Ian Neel, clinical lead of the Geriatric Medicine Consult Services at Senior Behavioral Health at UC San Diego Health, explained. “But as we age, our immune system wanes, and it puts us at higher risk of this virus breaking out of its cage and reactivating.”
While many people, like Coleman, think shingles is rare, the fact of the matter is that one in three Americans will get shingles in their lifetime, usually after age 50. That number jumps to one in two if you live to be 85. While about half of all shingles cases occur in those over 60, illnesses, medications, or even stress that weakens your immune system can also cause the virus to spring to life in your body, resulting in a case of shingles.
Risk of shingles: rash, nerve pain, exhaustion …
Shingles is named after the Latin word cingulum and Medieval Latin schingles, meaning “belt” or “girdle,” because it typically presents as a band of fluid-filled blisters around the left or right side of your torso. But the shingles rash can occur anywhere on the body, including your face, as Coleman experienced.
Coleman’s rash extended from her scalp to just beneath her eye, causing her eye to swell shut in the early days. Later, her cornea became inflamed, which has caused blurry vision, extreme light sensitivity, headache pain, and an agonizing sensation that something is in her eye. Shingles in or around the eye is unusual, occurring in only 10% to 20% of cases, and can cause permanent vision loss if left untreated.
Coleman also has experienced excruciating nerve pain. “The pain was the most intense the first three to four days,” she notes. “It felt like lightning bolts of pain through my head.”
As a result of the nerve pain, Coleman has been extremely fatigued. The 61-year-old, who was very active before, is unaccustomed to this type of exhaustion, and it’s been particularly frustrating since she just retired a few months ago. Now, she has limited energy to do much of anything, including spending time with her 5-year-old grandson and brand-new granddaughter.
Typical shingles symptoms usually last three to five weeks; however, complications such as a corneal infection, as Coleman has experienced, or bacterial infection of the skin can prolong the effects of the disease. Nerve pain may also continue long after the blisters are gone. Known as postherpetic neuralgia, this condition occurs when damaged nerve fibers send “confused and exaggerated messages of pain from your skin to your brain,” according to the Mayo Clinic. Shingles may also cause neurological problems, including inflammation of the brain (encephalitis), facial paralysis, or problems with hearing or balance.
Not necessarily one and done
After contracting the disease, Coleman was surprised to learn that her shingles infection would not prevent her from getting it again. However, recent studies show that only 1.2-9.6% of people may experience a recurrence. This number rises to 18% in those with weakened immune systems.
However other factors besides your immune system can increase your chances of a repeat infection. These include having chronic health conditions like heart disease, diabetes, high blood pressure, and autoimmune diseases; undergoing treatments that suppress your immune system; having the first infection impact an eye; experiencing severe pain; or being female.
The best defense against your risk of shingles
The most effective way to prevent shingles is by getting the Shingrix vaccine. The CDC recommends that all adults 50 and older get the vaccine whether they’ve had chickenpox or not. The vaccine is also recommended if you’ve experienced a shingles infection (since you can experience a recurrence), if you’ve had the older Zostavax vaccine, as well as for those over age 19 with weakened immune systems.
Shingrix, which is given in two doses, two to six months apart, has been found to be 97% effective at preventing shingles in people in their 50s and 60s, and 91% for those 70 and older. Even if you do have a shingles outbreak, the vaccine will typically reduce the duration and severity of the disease, including your risk of postherpetic neuralgia.
New research shows that the vaccine may be approximately 80% effective for up to 11 years; however, efficacy varies from person to person. Currently, there are no boosters available.
Shingrix also has benefits beyond protecting against shingles. In a recent study, older adults who received the Shingrix vaccine were 20% less likely to develop dementia over the next seven years than their unvaccinated peers. Shingrix has also been shown to lower your risk of COVID-19 by 16% and reduce COVID hospitalizations by 32% and to lower the risk of heart attack and stroke.
Get the vaccine!
A month later, Coleman’s rash has resolved and she isn’t contagious, but she continues to deal with the virus’s impact on her eye. She visits an ophthalmologist on a weekly basis because her vision is still fuzzy, and it’s next to impossible for her to tolerate the sun. She’s forced to wear dark sunglasses (sometimes two pairs) and a hat when she visits her grandkids, and she hasn’t gone shopping since the onset of the disease. Coleman is also still plagued by the fatigue. She’s spending most of her time inside coloring in adult coloring books.
“I’ve always felt youthful. This experience has made me feel very vulnerable,” she admits. “It’s made me realize my body is aging.”
If Coleman could have a do-over, she’d definitely get the vaccine to save herself all this pain and suffering. But the next best thing is for her experience to serve as a cautionary tale to motivate others. “This vaccine could preserve your quality of life,” she says.
