At 13, An Advocate for Pediatric Pain

Leighann Talbert is a driven and talented 13-year-old who enjoys working with horses, playing the violin, and leading the youth band at church. She’s a hard-working young teen who manages her hobbies, school, and life—all while living with acute and chronic pain.

Leighann lives with amplified musculoskeletal pain syndrome (AMPS) and complex regional pain syndrome (CRPS).

Her pain journey began when she fell off a slide nine years ago, injuring her wrist. For the next four years, Leighann experienced multiple falls that caused her more and more pain, such as a knee injury while playing Twister at school. The acute pain from her injuries slowly transitioned to chronic pain, with muscle weakness and strong spikes of sharp pain.

Initially, Leighann shares, she thought her pain would go away following treatment. “It took me a few months to realize that, OK, it’s not going to be like that. It’s going to be something that’s more constant,” she says.

For the last three years, Leighann has sought to grow awareness of pediatric pain while coping with her own pain flares.

A SEA OF DOCTORS, URGENT CARE VISITS, AND SPECIALISTS

Leighann’s parents, Tony and Amy Talbert, took her to local doctors at first, but the bouts of pain led them to urgent care facilities many times and required several visits to the emergency room. They struggled to find a specialist who would even look at Leighann’s case.

“It really made me feel helpless at times,” says Amy. “The things that we would try just wouldn’t fully relieve her pain. It felt like we were having to constantly try to put the puzzle together, and the puzzle would never fully be completed because we didn’t ever have a reason, necessarily, for the recurring pain.”

Eventually, Leighann was seen at Children’s Mercy Kansas City’s rheumatology center and diagnosed with AMPS, which causes intermittent or constant pain anywhere in the body and often is caused by an injury. The medical condition is caused by an overactive pain reflex—constriction of the blood vessels deprives oxygen to the muscles, bones, and skin, ultimately amplifying mild pain signals and causing them to be more extreme.

Leighann was later diagnosed with CRPS as well. CRPS is a neuropathic condition that often develops after an injury and involves extended periods of pain and inflammation that may come with bouts of spontaneous or excessive pain in response to normal stimuli, such as a mild touch.

“I have CRPS mainly in my wrist and back, but AMPS is more all over, and CRPS is more sharp, and also the spasms will just randomly come,” says Leighann.

The CRPS also causes rashes, swelling, and discoloration. Leighann’s conditions worsen with weather changes, sickness, or added stress. She was given stabilization braces and crutches to ease the pain, but the available treatments and medications don’t offer her full relief.

DIAGNOSIS DOESN’T MEAN ‘CURE’

Pain management is complex, and Leighann’s conditions don’t have a cure. Unfortunately, many of the treatments that help her the most aren’t covered by her insurance, or have coverage caps. Supplementary insurance through the Arkansas Medicaid program helps cover some of Leighann’s treatments when her primary insurance coverage stops.

“A lot of things that were recommended, like massage therapy and some of the more naturalistic approaches, and other things like counseling, usually are not covered,” says Amy. “The pain always comes back in some way, but those things do help, especially the physical therapy and the counseling.”

At home, Leighann uses a transcutaneous electrical nerve stimulation (TENS) unit, heat, muscle relaxers, and rest to combat a pain flare and reduce it to a tolerable level. Her daily average is a three or four on the pain scale, but sharp pain and muscle spasms in her back can cause it to skyrocket to a seven or eight.

Gabapentin reduces some of her nervous system stimuli, and Leighann takes melatonin and amitriptyline at night to calm the dull drum of AMPS and keep it from waking her up. Sleep hygiene and various therapies, such as breathing apps, tapping therapy, meditation, singing, acupressure, music, and worship participation all help Leighann manage her conditions as well.

“She persists and perseveres through the pain in order to still take part in activities, hobbies, and things that she enjoys,” Amy says. “At times I think those, then, become her therapy.”

Leighann’s family has a history of chronic pain. Amy has lived with fibromyalgia for about 20 years and recently was diagnosed with lupus. Amy’s mother has osteoarthritis and fibromyalgia. Knowing that they can turn to each other and relate to the other’s pain has drawn Amy and Leighann closer. Amy’s husband, Tony, provides loving support at home, advocates for his daughter, and helps get Leighann to appointments or treatments.

Most of Leighann’s teachers have been really supportive and check in on her. Last year, she missed around a quarter of the school year because of health-related absences, but she always worked to get her homework done. The isolation and lack of interaction with her peers can cause her to feel lonely sometimes, and she only discusses her medical conditions with closer friends who are supportive. Among kids her age, Leighann doesn’t want to be identified by her pain.

LIFE IN LEIGHANN’S SHOES

A good day for Leighann is going to school and being able to enjoy an after-school activity, such as participating in the youth band at her church or spending time with horses. But a bad day means she’s in too much pain from AMPS and CRPS to go to school and must miss out on learning and interaction with her peers.

Horse therapy has been particularly restorative. “Being with the horses is very calming,” says Leighann. “They can understand what you’re going through at times, and they will usually adapt to your mood.”

Playing the violin offers a unique therapy for Leighann as well. Although she sometimes experiences soreness in her wrist after playing, the movements and music generally help ease her pain, Leighann says, offering an added benefit to music therapy. She loves creating things and has taken to graphic design as a way to make art and raise awareness for pain conditions. Volunteering with her church and other organizations helps Leighann cope with chronic pain and focus on helping others and doing what she loves.

ADVOCATING FOR PEDIATRIC PAIN

For three years, Leighann was named Arkansas Miss Amazing Preteen through a national movement geared toward empowering girls and women with various disabilities. Her platform was pediatric pain awareness.

In 2019, the year she was finally diagnosed with AMPS, Leighann went to Chicago for the National Miss Amazing Summit and represented the state of Arkansas. In 2021, she went for a second year to the National Summit in Nashville. During that year, she experienced frequent flares, which made her passionate about advocating for pain awareness. For the event’s “passion presentation,” she sang “A Million Dreams” from The Greatest Showman with a slideshow she made for awareness of AMPS and CRPS.

She returned to the state competition in 2022 and displayed advocacy graphics she had created while she performed a violin solo of “Hallelujah.”

‘STRENGTH THROUGH THE STRUGGLE’

Leighann believes it’s important to tell people about your struggles, because keeping them inside can increase your stress and make you feel even more isolated. She is a part of several awareness groups and nonprofit pain advocacy groups. In 2022, the Talbert family attended the U.S. Pain Foundation Pediatric Pain Warriors family summer camp in San Antonio, Texas. The camp helped them recognize that they are not alone, and that they have a community of pain warriors walking alongside them on their journey. Pain takes over many aspects of your life, but finding “strength through the struggle” is how the Talbert family keeps going.

“It’s given me a new perspective and helped me to know you don’t necessarily have to be OK all the time,” says Leighann. “What you go through, you can always get something out of it and learn something new.”

—Ashley Hattle