Complex Regional Pain Syndrome (CRPS)

Complex regional pain syndrome (CRPS) is a condition of severe localized pain. We have known about this syndrome since the 19th century when it was called causalgia. It was also later called reflex sympathetic dystrophy (RSD).

A person with CRPS often has had a major stressful event like trauma, infection, sprain, emotional stress, surgery or a similar event that is very hard on the body.

The body's nervous system reacts by causing the body to keep sending pain signals to the brain. Your brain then interprets these signals as ongoing pain, which triggers a pain cycle. Most people have pain in their arms or legs but almost any body part can be affected.

Complex regional pain syndrome (CRPS) can happen in people of all ages, races, ethnic groups and genders. The majority of people with CRPS are females (60 percent to 80 percent) and adults.

Children may also get CRPS. Kids actually respond the best to treatment. As stated earlier, people who have had a stressful event are most at risk for developing CRPS.

We don’t know what causes CRPS. Many times we never even find out what triggered the pain cycle. Unfortunately, there is no blood test or study like an X-ray or CAT scan that can tell your doctor if you have CRPS. Bone scans may show changes but are often normal and so many times are not useful.

Sometimes CRPS is misdiagnosed. Rheumatologists are experienced in diagnosing CRPS in people who do not have a diagnosis yet or who have been misdiagnosed. Fortunately, many patients with CRPS have very similar symptoms. This helps your healthcare provider better decide if you have CRPS.

The International Association for the Study of Pain (IASP), which helped develop the term complex regional pain syndrome, lists the following as important in deciding if a person has CRPS:

  1. Known cause for person not being able to move or clear event that started pain cycle
  2. Severe pain with light touch of skin, pain response which does not fit, or continuous pain
  3. Changes in area affected such as swelling or changes in blood flow or skin color of affected area
  4. No other clear cause for pain and immobility (inability to move)
  5. No obvious nerve damage

CRPS causes a person to experience severe pain out of proportion to things like gentle or light touch. The severe pain can occur even without stimulation or touch. Some people may have changes in their skin such as a pale, blue, red or a shiny appearance. A person may also notice swelling or stiffness in the area that is in pain. Some people feel a burning sensation, dryness, or coolness of the body part involved. In CRPS, the nerves have changed and will continue to send signals to the brain that pain is happening, even when the cycle has stopped.

The severe pain may cause a person to stop using his or her arm, leg or body part that is affected. If this lack of use (immobility) continues for a long time, then the bones of that body part may lose calcium. On X-rays osteoporosis may be seen. The muscles of that area also begin to atrophy (decrease in size) like someone who had their arm in a cast for several weeks.

CRPS can cause many problems, especially if it is left untreated. Treatment is focused on the different areas CRPS affects. Early diagnosis is important for preventing a prolonged course and some of the changes to the skin and bones discussed earlier.

Aggressive management, with a team approach, is important in dealing with the different parts of a person's life that CRPS may affect. A typical CRPS treatment team includes a psychologist, rheumatologist, primary care provider, nurse, social worker, school teacher, physical therapist and occupational therapist.

The aggressive treatment aims to break the cycle of pain by dealing with the different areas that CRPS can affect. The different treatments for CRPS include education about this condition, physical and/or occupational therapy, learning coping skills, normal use of the affected body part, desensitization (stopping the pain cycle by touching the body part that hurts), or medications. Surgery is rarely needed. Unless there is a medical reason for the body part to be in a cast or splint, those devices should not be used. They may actually make CRPS worse by adding to the cycle of pain and immobility. You and your treatment team must decide together what treatments are appropriate for you.

For more information about Pain Management at Cincinnati Children's, contact 513-636-7768.

Last Updated 02/2016