Imagine plunging your hand into a pot of boiling water – and leaving it there. Imagine a hot knife being thrust into your eye without being withdrawn. Imagine not being able to tolerate intense light or loud noises because of the pain each causes.
That’s a short list of the daily challenges Keith Orsini faces every day.
Orsini has what is called complex regional pain syndrome – aptly referred to as CRPS by acronym.
Symptoms of the condition began after Orsini was severely injured playing baseball. A freshman pitcher for his high school baseball team, Orsini was struck in the face by a line drive.
At the time, Orsini and his coach wanted him to shake it off and return to the game. His dad prevailed, however, and the young athlete went to the hospital.
“It broke my nose and shattered my cheek bone,” he said. “I lost sight in my left eye.”
That was in the spring of 1974.
Orsini said he began to experience sensitivity to light and sound almost immediately. He also complained of constant pain and touch sensitivity.
His doctors told his father that Orsini was drug-seeking or a complainer. His efforts to get medical help were frustrating, he said.
“Some people will tell you that God never gives you more than you can handle,” he said. “I don’t believe that. I always felt that God helps you turn things around.”
Orsini was not diagnosed with CRPS until 1993 – 19 years after his accident. He is 54 and has lived with his condition 35 years.
Turning things around
In 1995, Orsini’s family founded American RSDHope, a nonprofit organization dedicated to educating the public about this little-recognized condition. The family did not want others to experience what Orsini had gone through in getting a diagnosis.
“At one time a patient with CRPS had to see around 10 doctors before getting a diagnosis,” he said. “Now, the average is three doctors.”
Their efforts were to reach physicians as well. Orsini said amputations of limbs occurred as a result of doctors thinking the pain would end with the removal of the painful site. The problem is CRPS can spread.
“You have someone whose leg or arm has been amputated to end the pain, only to still have pain – minus the limb,” Orsini said.
In addition to his mother, Lynne Orsini, Keith Orsini has a partner who works with him. They met in Florida as volunteers with the Humane Society. Anjanette Lee was diagnosed with multiple sclerosis (MS), similar to CRPS in that it is related to the nervous system. There the comparisons end, they both said.
Orsini and Lee are unable to work regular jobs and are relegated to disability incomes. But they find great solace in working with kindergartners at a local elementary school.
Asked if it isn’t painful for him when the children touch him, Orsini looked up with a slight smile.
“It is a great reminder to me that there are children who are not constantly suffering from pain,” he said.
Asked how he has coped all this time, Orsini is philosophic.
“You lose most of your friends when you have a chronic illness,” he said. “People don’t know. They are uncomfortable around you and don’t know what to say.”
He said CRPS has been called the suicide disease. Most don’t last as long as him.
Asked what he would like to happen in his life, he replied, “To be normal.”
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Complex regional pain syndrome was formerly known as reflex sympathetic dystrophy syndrome (RSDS). It is a progressive disease with no known cure, Keith Orsini said. It attacks the sympathetic nervous system, which mobilizes the body’s nervous system through hormonal and stress response.
Between 1.5 and 3 million are affected, according to information provided by American RSDHope. While anyone can get the disease, women dominate the numbers at 75 percent.
Pain caused by CRPS is constant, extremely intense, and out of proportion to an injury. According to the McGill Pain Index, CRPS is the most painful chronic pain listed. It ranks above chronic back pain, childbirth and the amputation of a digit.
While patients do experience remission – the absence of symptoms – a simple stubbed toe can bring the onslaught back, Orsini said.