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Living With Chronic Conditions
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Why You Need to Address Complex Regional Pain Syndrome

Overcoming complex regional pain syndrome

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.

Tags: chronic pain, complex regional pain syndrome, CRPS, pain management
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  • T. Hopper

    My son has CRPS and completed the pediatric pain rehab program in April of last year. It was life-changing for him and restored the function to his leg. Amazing program run by amazing people!

  • ornurse32

    My son is 11 years old and is suffering terribly from a leg injury that caused CRPS. We are being treated by local physicians but NOTHING has helped. It has only been 7 weeks today but he is in CONSTANT intractable pain 24/7. Our insurance says they will not cover the Cleveland Clinic until all treatments have failed here in Michigan. Any advice? Two failed nerve blocks and max meds haven’t touched it.

    • Patient

      You should call Cleveland clinic and ask to speak with their financial department. You may find a loophole in your insurance or you may find you can cover the cost without your insurance (letting the doctors and staff know your situation, who your insurance provider is and what they told you may result in them lowering the treatment costs in your specific case) I am in no way affiliated with Cleveland clinic and am not saying they will do this but it is worth a shot! I am a patient there and can tell you they are amazing and I am no doubt alive today because of them. I hope your son is able to get the treatment he needs and can be rehabilitated and enjoy hos life. Pain is a horrible and debilitating issue and when the patient is a child its even worse. Good luck!

  • Elisha Wooden

    My husband has been dealing with this for 4 yrs. We drive 5 hrs to see a specialist in San Francisco who experiment on him with different meds..spinal blocks and therapy. With not much success. He cant walk far and requires a cane for assistants as his knee will just let out from under him. The meds are mostly neurologic so hes not always himself. I wish we had someone who could help him function better and be apart of our family activitys again, we have 5 kids still at home and he just cant function.