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What is complex regional pain syndrome?

Previously known as reflex sympathetic dystrophy, complex regional pain syndrome (CRPS) is a condition associated with persistent pain in one or more limbs, as well as sensitivity to touch, swelling and changes to skin color and hair and nail growth. Damage to the central and peripheral nervous systems is believed to cause CRPS. The condition is typically triggered by physical trauma or injury — even minor in nature. It isn't yet clear why some children develop CRPS and others with similar injuries do not.

Complex Regional Pain Syndrome | Symptoms & Causes

What are the symptoms of CRPS?

The main symptom of complex regional pain syndrome (CRPS) is severe and prolonged pain in the affected limb. This sensation, which may feel like burning, shooting, stabbing or "pins and needles," can spread to the entire limb — even if the initial injury was minor or only involved a smaller area, such as a finger or toe. Pain is typically worse when a child tries to move the affected limb or put weight on it. Other common symptoms of CRPS can include:

  • allodynia, or increased sensitivity in the affected area, which can make normal contact extremely painful
  • swelling of the affected limb 
  • changes to the color of the affected limb, which may turn blue, red, purple or pale
  • changes to the temperature of the affected limb, which may feel warmer or cooler than the unaffected limb
  • changes to the texture of the skin, which may become thin, dry and shiny
  • changes in nail or hair growth on the affected limb
  • joint stiffness in the affected limb
  • decreased range of motion in the affected limb
  • dystonia, or abnormal movement in the affected limb

What causes CRPS?

CRPS is an abnormal response or overreaction to injury and appears to be the result of damage to the central and peripheral nervous systems. It typically develops after a child has experienced physical trauma to a limb or extremity, although the original injury may be minor. Common triggers associated with CRPS include:

  • sprains
  • fractures
  • burns
  • cuts
  • limb immobilization (such as wearing a cast)
  • surgery

These injuries can involve damage to nerve fibers, which in turn can contribute to pain, inflammation and blood vessel abnormalities. It isn't yet completely clear why some children develop CRPS and others with similar injuries do not.

Researchers believe that CRPS may have a genetic component. CRPS appears to be more common in girls and is most likely to affect the lower extremities, such as the feet. Some research suggests that stress may worsen CRPS or make it more likely to develop.

Complex Regional Pain Syndrome | Diagnosis & Treatments

How is complex regional pain syndrome diagnosed?

Physicians diagnose complex regional pain syndrome (CRPS) based on a child's symptoms and medical history. There isn't currently a specific test to determine if someone has CRPS, but certain tests — including blood tests and imaging scans — can help rule out other causes of chronic pain, such as Lyme disease and arthritis.

How is complex regional pain syndrome treated?

The goal CRPS treatment is to relieve pain and improve your child's quality of life. CRPS appears to respond best to a multifaceted therapeutic approach that involves clinicians from a variety of different specialties. Treatments for CRPS can include:

Physical therapy. Exercise and physical therapy (PT) are cornerstones of a CRPS treatment plan. Research suggests that programs involving intensive exercise and PT — up to six hours a day — can improve symptoms of CRPS in the majority of children with this condition.

Psychotherapy. Psychological approaches including cognitive-behavioral therapy (CBT) have been found to help improve quality of life in people with chronic pain. CBT in particular helps children gain the tools they need to cope with CRPS, which in turn may help relieve pain.

Medication. Although the U.S. Food and Drug Administration has not approved any drugs to treat CRPS in children, some physicians may use certain medications to improve pain. These can include nonsteroidal anti-inflammatories (such as ibuprofen), antidepressants (such as amitriptyline) and anti-seizure drugs (such as gabapentin).

Nerve stimulation. Transcutaneous electrical nerve stimulation (TENS) is a noninvasive therapy that uses a low-voltage electrical current to help relieve pain from CRPS.

How we care for complex regional pain syndrome

The clinicians in the Chronic Pain Clinic at Boston Children's Hospital evaluate and care for children, teens and young adults with a variety of chronic pain conditions including CRPS. Our diverse team of experts takes a holistic approach to chronic pain that addresses its physical, psychological and emotional aspects.

If your child experiences chronic and disabling pain from CRPS, they may qualify for intensive inpatient treatment in the Mayo Family Pediatric Pain Rehabilitation Center (PPRC). Our highly specialized and dedicated team of physical therapists, occupational therapists, psychologists, recreational therapist, nurses and physicians work together to provide an individualized treatment plan for each child.

Complex Regional Pain Syndrome | Programs & Services