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Arthritis and Rheumatology Conditions and Diagnoses

Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD)

What is CRPS/RSD? | Who gets CRPS? | Diagnosis | Affects of CRPS | Treatment

What is Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy?

Reflex sympathetic dystrophy (RSD) is a condition of localized severe pain. We have known about this syndrome since the 19th century when it was called causalgia. Over the years this syndrome has changed names. RSD is also known as Complex Regional Pain Syndrome Type 1.

In Complex Regional Pain Syndrome (CRPS) a person experiences a stressful event such as trauma, infection, sprain, emotional stress, surgery or similar event which is demanding to the body. The body's nervous system then reacts by causing the pain signals to continuously send signals to the brain. Your brain then interprets these signals as ongoing pain (pain cycle). Most people have their arms or legs which suffer from the pain, but almost any body part can be affected.

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Who gets Complex Regional Pain Syndrome?

Complex Regional Pain Syndrome (CRPS) can occur in people of all ages, any ethnic group and both genders. The majority of individuals affected with CRPS are female (60-80%) and adults. Children may also get Complex Regional Pain Syndrome. Kids actually respond the best to treatment. As stated earlier people who have had a stressful event are most at risk for developing CRPS.

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How is CRPS diagnosed?

What exactly causes CRPS is unknown. Many times we never find out what triggered the pain cycle. There is no blood test or study such as x-rays or CAT scans that can tell your doctor if you have CRPS. Bone scans may show changes but are often normal and thus many times are not useful.

Sometimes CRPS is misdiagnosed. Rheumatologists are experienced in diagnosing people with CRPS who do not have a diagnosis or have been misdiagnosed. Fortunately many patients with CRPS have very similar symptoms. This allows your health care provider to better determine if you have CRPS.

The International Association for the Study of Pain, 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 which 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 of pain and immobility
  5. No obvious nerve damage

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What does CRPS do to the body?

CRPS causes a person to experience severe pain out of proportion to stimulation. The severe pain can occur with no stimulation, light touch which normally does not cause discomfort or cause continuous pain even after the stimulation has stopped. Some people may have changes in their skin such as pale, blue, red or a shiny appearance. A person may also notice swelling or stiffness in the area which has the pain. Some people feel a burning sensation, dryness or coolness of the body part involved. The nerves have changed and will continue to send signals to the brain that pain is occurring.

The severe pain may cause a person to stop using the arm, leg or body part that is affected. If this immobilization 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 an arm in a cast.

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What is the treatment for CRPS / RSD?

CRPS can cause many problems especially if it is left untreated. Treatment is focused to 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 addressing the different aspects 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 addressing 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 (extinguishing the pain cycle by touching the body part that hurts), or medications. Rarely is surgery needed. Unless there is a medical reason for the extremity to be in a cast or splint, they 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.

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Contact us

For additional information on this or any Health Topic, please call the Family Resource Center, 513-636-7606, or your pediatrician.

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Written 6/05; Revised 4/07