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Patient Bill of Rights

  • The right to have your report of pain taken seriously and to be treated with dignity and respect by doctors, nurses, pharmacists and other healthcare professionals.
  • The right to have your pain thoroughly assessed and promptly treated.
  • The right to be informed by your doctor about what may be causing your pain, possible treatments, and the benefits, risks and costs of each.
  • The right to participate actively in decisions about how to manage your pain.
  • The right to have your pain reassessed regularly and your treatment adjusted if your pain has not been eased.
  • The right to be referred to a pain specialist if your pain persists.
  • The right to get clear and prompt answers to your questions, take time to make decisions, and refuse a particular type of treatment if you choose.
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Wednesday, 20 October 2010 21:56

C.R.P.S

cancer pain2

Fast Facts

Although complex regional pain syndrome (CRPS) was first described in Civil War veterans more than 140 years ago, it remains a poorly understood and sometimes undiagnosed disorder that may affect millions of people in the United States alone.

Over the years, CRPS has been known by a number of different names including Sudeck’s atrophy, reflex sympathetic dystrophy, shoulder-hand syndrome, post-traumatic dystrophy, reflex neurovascular dystrophy and causalgia.

CRPS type I (CRPS - I) and CRPS type 2 (CRPS - II) are the current terms used by the International Association for the Study of Pain. This was done to more accurately describe the conditions previously known as reflex sympathetic dystrophy (RSD) and causalgia.

CRPS - I refers to cases of CRPS that do not involve nerve injuries. CRPS - II refers to those CRPS cases in which one or more nerves are injured. More people have type I than type II CRPS.

Although the actual prevalence is unknown, CRPS is not a rare disorder. According to the Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA), CRPS may affect millions of people in the United States. Unfortunately, because symptoms vary so widely, many people are not quickly diagnosed with CRPS.

CRPS is more common in women than men. The average age person affected by CRPS is in his/her mid-30s, although children and older adults can also be affected.

Research has not yet determined the real cause or causes of CRPS, but a number of precipitating factors are linked to the onset of CRPS.  Most cases of CRPS begin after mild to severe trauma such as any injury, illness or procedure.

A common symptom among patients with CRPS is intense pain that feels much worse than it should and continues long after it should have stopped hurting. The pain is often described as sharp, shooting, stinging, burning, vibrating, deep or tingling.

The distal part of the limb (hand or foot) is most often affected. Symptoms of CRPS may come and go over time.

No one specific medical test or tool is currently available to diagnose CRPS with certainty. Any combination of tests can only give a high, medium or low probability that the group of symptoms and signs is CRPS. Evaluation and testing involves a careful history and physical examination as well as a combination of complex tests that are best administered by specialists in pain medicine and management.

Treatment of CRPS requires a team approach — you, your health care providers, and others involved in your care. You may need a combination of treatments. These may include pharmacotherapy, psychosocial interventions, physical rehabilitation, complementary and alternative techniques, injections and infusion therapies and implantable devices or surgical interventions.

The long-term outcome of CRPS is usually better if it is diagnosed and treated at an early stage.

Causes

Researchers do not fully understand why CRPS occurs; however, there are a number of factors are linked to the syndrome — in particular, trauma. Biochemical changes at the initial site of injury and then later within nerves, spinal cord and brain may all play a role in the development and continuation of CRPS. Hopefully, continued research will one day identify these mechanisms, which may lead to more effective CRPS treatments.

Stages of CRPS

Not all people with CRPS move from stage to stage in an orderly progression, especially not children.

Stage one is called the acute stage. During this stage, your child’s onset of CRPS may occur immediately after the initial injury or may not occur until several weeks after the event. Either way, your child experiences pain that is out of proportion to the injury. Your child may have swelling (edema), redness or inflammation of the skin (erythema) and increased warmth or coolness in the affected limb.

Stage two is called the dystrophic stage and typically occurs three to six months after symptoms begin. You may notice skin and nail bed changes in your child during this stage and your child's health care provider may find bone mineral loss of the affected limb that is identified by x-ray.

The third stage of CRPS is called the atrophic stage where a progressive decline of skin and muscle and osteopenia (a condition where bone mineral density is lower than normal) can occur. Although it is not unheard of, children rarely progress to the atrophic stage.

Who is affected?

It is not known how many children have CRPS type II (causalgia) — researchers estimate that one percent to five percent of the adult population has CRPS type II.4 Children may develop CRPS type II from subtle but direct nerve injury that may occur with improper needle injections or catheter placements or trauma caused by heavy machinery accidents (e.g., lawn mower).

Children who have CRPS type I more frequently are affected in one of their lower extremities — children's legs and feet are affected about five times more often than their arms and hands.2 Adults, on the other hand, are twice as likely to be affected in an arm, hand or fingers. There are twice as many adult female cases as there are male cases of CRPS type I.5In children, there is an even sharper contrast as the syndrome occurs in girls four times more often than in boys. The average age a child may develop CRPS is 12.5 years.2 Most children with CRPS type I are from upper middle class families and are athletic. A typical pediatric case of CRPS type I is a girl who participates in ballet, soccer or gymnastics. Researchers have hypothesized that there may be a genetic predisposition to CRPS type I. Most children who have the syndrome are Caucasian.5, 6