Complex regional pain syndrome (CRPS) is as bad as it sounds — severe, spreading chronic pain with redness, fluctuating skin temperature, and sometimes changes in body hair and nail growth. These issues make it hard for most patients to use their affected arm or leg, the body parts that are most often impacted.
As if that’s not enough, CRPS is not widely known by many doctors and is not well understood, so it is often misdiagnosed and many patients receive the wrong treatments or no treatment at all.
Most cases of CRPS develop after an injury to a limb. Up to 7 percent of children who suffer a traumatic arm or leg injury may develop CRPS shortly afterward. That rate is even higher in adults: about 8 to 10 percent.
Because CRPS can cause the arm or leg to stiffen over time, the pain usually worsens without treatment and makes movement more and more difficult. For these reasons, early diagnosis and the right treatment are critical.
Comprehensive treatment needed
Treatment of CRPS requires multiple therapy approaches carefully coordinated by physicians and therapists who are experienced in this complex condition.
The approach to CRPS at Cleveland Clinic has been shaped by Dr. Stanton-Hicks, MD, a consultant in our Department of Pain Management who is one of the world’s leading experts on the condition. He helped establish the Pediatric Pain Rehabilitation Program at Cleveland Clinic’s Shaker Campus, which provides an intensive program for children and adolescents with CRPS. This complements the Chronic Pain Rehabilitation Program, a similar program for adults with CRPS.
It is important to integrate a range of physical, occupational and psychological therapies — such as biofeedback, relaxation techniques and group therapy — on an inpatient and day-care basis over a three-week period. In regards to children, the emphasis is on psychological approaches, for patients and their parents alike, because of the importance of developmental changes in children’s responses to pain.
“Both programs aim to raise patients’ pain threshold and help them manage pain so that it’s not such a big part of their lives,” explains Dr. Stanton-Hicks.
Learning to manage the pain
The techniques that patients learn in these programs, sometimes together with well-chosen medications, enable some patients with CRPS to successfully manage their pain and lead active, “normal” lives. Other patients require additional interventions, such as nerve blocks or spinal cord stimulators that modulate pain by delivering electricity to the spine.
About 80 to 85 percent of children and adolescents with CRPS who complete this intensive array of therapies eventually get “almost completely better,” says Dr. Stanton-Hicks. That degree of recovery is unusual in adults, where the aim is more about maintaining function and reducing pain to a level that lets patients keep working and lead a relatively normal life, he explains.