Shingles Led to Postherpetic Neuralgia and Stopped this Working Mother in Her Tracks

For Minneapolis mom Kim Gumm, developing shingles in her 40s was a pain, but being left with a chronic nerve condition has been nearly unbearable.

Shingles is a painful illness caused by infection with the varicella zoster virus, which usually makes itself known first in childhood as chickenpox. In many people, however, the virus resurfaces much later in life as shingles. Shingles, also called herpes zoster, can cause an itching, burning rash and intense nerve pain. It’s definitely no picnic, but most people recover completely within three to five weeks.

However, for about 10 to 15% of people who get shingles, the pain is more severe and lasts longer—sometimes much longer. In these unfortunate cases, shingles can leave patients with a secondary condition called postherpetic neuralgia (PHN).  

This is exactly what happened to Kim Gumm, a Minneapolis-area mother of four. In March 2016, she embarked on an undesired journey from shingles to PHN that is still not over. It all started with a headache.

Kim Gumm, PHN patient and mom of fourKim Gumm with one of her four children before she was infected with the shingles virus that led to postherpetic neuralgia, a painful complication of shingles.

Confined to Being Under the Covers

Kim worked at home as an office administrator for a small company. The headache, located just behind her right eye, came on gradually one Thursday afternoon, and she stopped work early that day. The pain continued to worsen, and by Friday, she was in bed with the covers over her head to block out the light. At the time, she was being treated at the Mayo Clinic for an autoimmune disease, so she thought the headache may have been a side-effect of her treatment. She called her doctor and was told that the headache was not a side effect of treatment, but probably a migraine. She climbed back under the covers.

By Saturday, she was in so much pain that her husband took her to the emergency department. The ER physicians also diagnosed her with migraine, gave her pain meds, and sent her home, where she dived back into bed. The next day, she was back in the ER as the pain had only worsened. This time, the emergency physician ordered a CT scan, which turned out to be normal. Meanwhile, in the large mirror in the bathroom of her hospital room, Kim noticed a pimple on the bridge of her nose but didn’t think much more about it.

A couple of hours later, a neurologist came in to see her. When Kim timidly peeked out from under the covers, she recalls, “The neurologist asked, ‘When did you start getting that rash on your forehead?’” In addition to the pain in and around her eye, she now had a painful rash on her face. “I was zoomed away to a reverse air-flow room, where I stayed for a week.” That was no ordinary pimple and it was no ordinary rash. Kim was diagnosed with shingles.

It’s not surprising that it took Kim’s doctors some time to nail down her diagnosis. Most people get shingles after the age of 65. Kim was only 48. She had not had the shingles vaccine because the Centers for Disease Control and Prevention (CDC) at the time recommended the vaccine only for people over age 60 (Note: The CDC's recommendations have changed. The Shingrix shingles vaccine is currently recommended for people over 50 and requires two doses. If you've already had shingles, you should still be vaccinated as reinfection can occur.)

It’s also less common for shingles to show up in the eyes, which can cause a rash on the face and head. More typically, the rash and nerve pain appear around the mid-section of the body.

Kim was given antivirals, pain medications, and eye drops to keep the infected nerves in her eyes from permanently damaging her cornea. She was also given gabapentin, an anticonvulsant medication commonly used to treat the nerve pain in her eye and in the area of the rash, associated with the shingles virus.

Kim Gumm, being treated for PHN in the hospital"It was as if someone had put an iron across one side of my face," says Kimm of the way she looked in the hospital where she was treated for PHN.

Kim’s Postherpetic Neuralgia Symptoms: No Worse, No Better

Back home, Kim’s symptoms did not improve much. She was unable to return to work because of the pain, problems with her vision, and the side-effects of the gabapentin, which caused memory problems. By mid-July—more than 4 months after the initial onset—she still had swelling in her eye, spots on her cornea, scabbing on her scalp, and a great deal of burning pain. “It was like someone had set an iron on my head and left it there,” she recalls. She describes her condition at this point as “kind of treading water—no worse, no better.”

By the end of 2016, she had been diagnosed with postherpetic neuralgia. When the herpes virus flares back up to cause shingles in older adults, it can damage nerves in the areas around rash breakouts. With PHN, the nerves don’t heal as quickly as they normally would and instead can start sending random pain signals to the brain. This is what caused Kim’s continued burning and pain sensations. People who have shingles in the eyes or forehead, as Kim did, are more likely to develop PHN.

Kim’s neuralgia created a lot of pain, but she had other problems as well, particularly with her vision. She was given eye drops, which she had to use every waking hour. These helped some, she says, but being in bright lights was almost unbearable.

She discontinued using gabapentin because of the side effects she experienced, and the other prescribed pain medicines she weren’t helping much. She visited several neurologists in the hopes of being treated with nerve blocks. This was tricky in her case, because the nerve pain was located on the first branch of the trigeminal nerve, far too close to the brain for most doctors to want to give an injection there. She says, “I finally saw a neurologist at the University of Minnesota who was very compassionate. He’d actually had shingles himself, on his forehead.” But he was still unable to do much to relieve Kim’s suffering. Her situation was complicated by an additional diagnosis of fibromyalgia which came with its own presentation of widespread pain and chronic fatigue.

Finally, Kim Finds Some Hope

By this point, Kim was despairing of any doctor being able to help her. However, her husband, who works in the medical supply field, met a pain management specialist at a conference. The doctor offered to see Kim, and in January 2019, she visited him. “He was very kind and referred me to a neurosurgeon who could do nerve injections,” she says. In addition, he prescribed a very helpful topical cream and made other suggestions for dealing with the pain, such as ice packs and relaxation techniques. For the first time, Kim found an approach that worked—at least a little. “In my opinion,” she says, “if you’re suffering, go to pain management for options other than medications.”

Kim’s PHN story is not over. She still has a headache (take our headache type quiz) every day, though it varies in intensity. Her vision is much better, but not as good as it was before she developed shingles. She has returned to work, part-time, in a law office. She doubts she’ll ever be able to work full-time again. “I go to work, come home, rest. Maybe make dinner. Then I’m exhausted,” she says. “When I’m tired, my eye wants to be shut. I just have a feeling of being unwell.”

For most people, the pain of PHN lasts only a few months to a year after diagnosis. A few, like Kim, suffer longer and have to develop long-term means of coping with the pain. The good news is that the shingles vaccine can help to prevent the development of PHN as well.

However, she has ways to cope. “Ice packs help, and so does distraction,” she says. “I listen to a lot of audiobooks. Sometimes I force myself to get up and do something—maybe a little housecleaning.” Her advice for others with PHN? Try to stay positive. “I know it sounds cliché,” she says, “but it really does help. And see a pain management specialist” who can help provide specialized treatment as well as tips for managing pain at home. 

Updated on: 10/28/20