LEXINGTON, Ill. | Sometimes, the pain in Brianna Groth's right knee is so bad that it feels like it's being stabbed.
"It's really, horribly painful," said the 13-year-old Lexington girl.
"There isn't always pain," said the eighth-grader at Lexington Junior High School. "But there is most of the time."
For example, during late afternoon on Oct. 22, Brianna's right leg was numb. "I can't feel it," she said. "It goes from numb to hurting a lot."
What Brianna has been dealing with since age 4 is a disease that most people associate with older adults. She has arthritis — specifically juvenile rheumatoid arthritis.
"A lot of people don't understand that kids have arthritis," said Tara Braucht, East Central Illinois Area director for the Arthritis Foundation. About 300,000 children in the United States have rheumatoid arthritis, the foundation said.
Most children with arthritis — like Brianna — appear healthy at first glance.
"Brianna has had quite a struggle" convincing some people that juvenile arthritis is real and that she has it, Braucht said. "She looks like everybody else."
But some teens with arthritis need knee replacement surgery.
And Brianna knows there is no cure.
Brianna was 4 years old when she began waking up holding both of her knees, screaming and crying that they hurt. At first, her parents thought it was growing pains.
But her pediatrician ordered blood work, X-rays and an exam, which confirmed that Brianna had juvenile rheumatoid arthritis.
"It was something that no parent expects to hear about their kid," said her father, Jim Groth.
Brianna was prescribed nonsteroidal anti-inflammatory drugs, or NSAIDs, to help relieve pain and inflammation.
Because the inflammation can get into her eyes and cause blindness, she sees an ophthalmologist yearly for a thorough exam. "She's lucky that she has not had that complication," said Brianna's mother, Angie.
Brianna remembers being in pain during preschool, but by kindergarten, the medicine had her pain under control.
In second grade, she began playing softball and met her best friend, Megan Barth, now 14 and a freshman at Lexington High School. While it hurt Brianna to run, she was able to play.
Regular pain began returning in fifth grade. She tried playing volleyball in sixth grade but her knees swelled and she had to quit. Soccer and cheerleading also didn't work out.
In September 2011, she had a flare-up, with more pain and inflammation. Medicines were no longer working so she was prescribed stronger NSAIDs in October 2011.
The new medicine made her ill. "NSAIDs are hard on your stomach," her mother observed. "It caused gastritis and acid reflux.
"She couldn't keep anything down. She lost 10 pounds in the first three weeks."
"I threw up several times a day for four months," Brianna said. She missed weeks of school and was able to keep up with her studies only with the help of a tutor.
"It was pretty horrible," Brianna said of those four months.
Working with doctors, Brianna was able to get on the right combination of medicines to keep her pain under control while allowing her to keep her food down.
On Aug. 27, she was playing softball for her school team when she bent down and felt her right knee pop. The pain was so awful she began crying.
Brianna had dislocated her knee in an injury that apparently was exacerbated by the arthritis, said Ryan Davis, a physician-extender with the Orthopedic and Sports Enhancement Center, Bloomington. Davis referred her to a pediatric rheumatologist in the Chicago area, and Brianna had to stop playing softball.
"That sucked really badly," she said.
Sports Enhancement Center physical therapists worked with Brianna on decreasing her pain and restoring her normal range of motion and functioning.
During the next several weeks, Brianna used a wheelchair or crutches to get around, reducing the weight put on her knee. Friends at school helped her carry her books and with the wheelchair.
Megan helped after school.
"I help her make her food, help her with homework, and if she drops something on the floor, I pick it up," Megan said.
"She's like my shadow," Brianna said.
Because of the injury and arthritis, Brianna had chronic pain.
The pain was so bad on some days that Brianna didn't want to get out of bed.
"I'd have to help her out of bed and into the bathroom," Angie said.
By Oct. 19, her knee had healed enough that she no longer needed the wheelchair or crutches. But she began wearing a brace on her right knee to keep her knee cap in place and to provide support.
"I wear it 24/7, except when I'm taking a shower," Brianna said.
"Right now, I'm feeling better," she said last week.
"But she has a high pain tolerance," her mother said. "She adapts to deal with the pain."
Brianna's next step is to work with the pediatric rheumatologist to find non-NSAID pain medicine that can control pain without making her ill.
Brianna hopes to resume playing softball in spring 2014. Her goal is to control the pain enough that she can live a full life.
"You can't think it's the end of the world," her mother said. "You gotta keep going."