My 14-year-old niece, Sammie, stands with one arm to the side, the other above her head. She waits for my sister to cue the music on her phone. As the teen taps, turns, and glides across the tiled floor, her passion for dance overshadows the pain she experiences in her hips, knees, and spine.
Almost three years ago, Sammie was diagnosed with Complex Regional Pain Syndrome (CRPS), a form of chronic pain. The burning and tingling she feels in her arms and legs are constant reminders of spraining her wrist after bracing for a fall while running, and fracturing her ankles while dancing. In other words, Sammie’s CRPS is the result of engaging in typical teenage activities. But she’s working on reclaiming a pain-free life.
How to Identify CRPS
1. Recognize the signs of CRPS
Although typically seen in the arms and legs, CRPS can affect any part of the body. Symptoms include extreme sensitivity to touch and discoloration and temperature changes in the affected area. “Those are the things I wouldn’t ordinarily expect with growing pains,” says Dr. Emily Fox, a pediatric rheumatologist at Children’s Mercy in Kansas City, Missouri. The condition affects adults and children, but more commonly, adolescent girls. About seven percent of children are affected by CRPS.
2. Avoid professionals who don’t believe the pain is real
“Unfortunately, a fair amount of people get told that it’s in their head, just suck it up and move on,” says Dr. Fox. “This is a very real nerve and blood vessel problem.”
Fortunately for Sammie, the pediatric orthopedist referred by her pediatrician recognized her symptoms and understood her concerns. After testing, he diagnosed her with CRPS and sent her to a physical therapist who helped manage her pain. Almost three years later, the therapist retired, and the clinic suggested a different practitioner who attempted to convince Sammie that her discomfort was all in her mind. An hour later, she left the office still in pain.
3. Get a clear diagnosis
Recognizing that each child is different, Dr. Fox and her colleagues implement a process of exclusion. “There often can be a history of trauma that incites CRPS, but we want to make sure there are not any lingering injuries,” says Dr. Fox. They check for blood clots, especially when parts of the body are blue and cold. Depending on symptoms, a patient might receive ultrasounds as part of their workup. The goal is to rule out other conditions before diagnosing CRPS.
4. Understand what causes CRPS
Rather than having one unifying trigger, the condition can result from a combination of factors, including family history, injuries and illness, physical and emotional stress, and even hormones. Dr. Fox says they see an upsurge of the condition as patients are going through puberty.
My niece reports a significant increase in pain when she feels stress and has found ways to cope and de-stress, including reading, crocheting, and listening to music, which help distract her from her physical discomfort.
Ways to Treat CRPS in Teens
1. Physical therapy
Medications aren’t always the best way to treat CRPS. Dr. Fox recommends aggressive physical therapy and exercise to work on mobility in the affected areas. Desensitization, which includes rubbing, tapping, massaging, using vibration, applying heat and ice to the affected area—which is any area that feels uncomfortable to touch—can help ease the pain.
In addition to physical therapy, Sammie uses a transcutaneous electrical nerve stimulation (TENS) machine that produces an electric current to stimulate the nerves. The goal is to retrain the nerves that shouldn’t hurt with touch. “Some kids hate walking through the hallways at school because they’re afraid they’re going to get bumped,” says Dr. Fox. “We try to get them used to that normal touch again.”
2. Go beyond physical treatment
Physical therapy and desensitization address the physical aspect of CRPS, but a whole-body approach is critical to the healing process.
“The mind-body connection is very powerful,” says Dr. Fox. “That’s why we need to treat the whole picture.” Along with addressing the physical side effects of CRPS, she advises her patients to see a psychologist or counselor for dealing with the emotional and psychological aspects of living with CRPS.
3. Realize the pain can go away
Doing what Dr. Fox calls “homework,” including exercise, desensitization, and de-stressing, can yield good results. A study of 103 children participating in a similar program showed that 92 percent went into complete remission. Of those children who were followed for more than two years, 88 percent were pain-free.
Patients like Sammie can experience flare-ups, but they relapse less frequently following a pain management program. “We tell our kids, ‘You now have the tools to help work through this,’” says Dr. Fox.
Empowering kids like Sammie to help themselves through a holistic approach gives them an excellent chance of success at getting back to normal function and a pain-free life that includes their favorite activities—like dancing.