With a rating of 46.5 (out of 50) on the McGill Pain Index, CRPS is the most painful disease in the world.
Complex regional pain syndrome is a progressive disease of the autonomic nervous system, specifically the sympathetic nervous system. It is a rare form of chronic pain (lasting longer than six months) that is not clearly understood by medical professionals. CRPS is believed to be caused by damage to, or an abnormality of, the peripheral and central nervous system. The central nervous system is composed of the brain and spinal cord, whereas the peripheral nervous system sends nerve signaling from the brain and spinal cord to the rest of the body. The damage to these systems causes frequent to constant amplified signals of pain to be sent to the brain. CRPS typically occurs as a result of trauma or an injury, surgery, stroke, or heart attack and typically affects one of the four main limbs, although it can occur in any part of the body. The pain of CRPS is constant, more severe than the pain from the initial injury, and is often extremely debilitating. The area of the body that is affected often exhibits swelling, skin texture/color changes, and extreme sensitivity. Once an individual has CRPS, there is over a 70% chance that it will spread to additional areas. Treatments (pain management and various therapies) are most effective when started early and can actually allow improvement and even remission for mild cases. However, in more severe cases, individuals may never recover and may have long-term disability. The pain of CRPS is so excruciating that this syndrome has the nickname of “suicide disease.” The pain becomes unbearable, the syndrome is so misunderstood, and the lack of relief can lead patients to a dark place where they just want to escape the pain.
Quick Facts
Prevalence: Rare, fewer than 200,000 U.S. cases per year. It is more common for female, although it can affect anyone at any age, with a peak at age 40.
Cause: Trauma, injury, surgery, stroke, or heart attack. It may also be associated with Ehlers-Danlos Syndrome, but there is not sufficient evidence to indicate a direct link.
Symptoms:
Continuous burning, pins and needles sensation, or throbbing pain (usually in an arm, leg, hand, or foot). The pain can spread around the area that is affected and, in rare cases, can spread to the opposite extremity
Sensitivity to touch or cold
Swelling of the painful area
Changes in skin temperature, alternating between sweaty and cold
Changes in skin color (white and blotchy, red, blue)
Changes in skin texture (tender, thin, or shiny in the affected area)
Changes in hair and nail growth
Joint stiffness, swelling, and damage
Muscle spasms, tremors, weakness and muscle tissue loss
Decreased ability to move the affected body part
Areas Affected:
Any area on the body: Typically, an arm, leg, hand, or foot, but can be anywhere and can spread
Immune system
Peripheral and central nervous system: Brain, spinal cord, and signaling of pain
Nerves: Can lead to problems in blood vessels, bones, muscles, nerves, and skin
Patients With CRPS May Also Have:
Short-term memory problems
Depression or other emotional disturbances
Insomnia
Fatigue
Migraines
Worsening of symptoms
Severity: Range from self-limiting and mild to severe and debilitating.
Diagnosis: Made based on examination, symptoms, and exclusions of other possible causes.
Treatment: There is no cure, but symptoms can be managed through rehabilitation and physical therapy, psychotherapy, medications, neural stimulation, nerve blocks, ketamine, and other pain management methods.
Timeline: Chronic, can last for years or be lifelong.
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