My, what mild weather we’ve been having this fall. Keith Orsini of Hickory is certainly glad about it. A variety of environmental factors – weather being one of them – can increase the pain with which Orsini lives every day.
Vibrations, loud noises, temperature, stress, diet -- all capable of irritating the monster that lives in Orsini’s body, an ogre that came to life more than 40 years ago when Orsini was barely a teen.
Orsini has Complex Regional Pain Syndrome, “the most painful form of chronic pain that exists today,” Orsini said.
He explained CRPS, at one time known as Reflex Sympathetic Dystrophy Syndrome (RSD), in simple terms, using the example of cutting off a finger. He said a person without CRPS would experience excruciating pain if his finger was lopped off, but the pain eventually would subside.
A person with CRPS would continue to experience agony after the site had healed. “It’s out of proportion to the original injury,” said Orsini. “The signal keeps being sent that you’re in pain even though the injury has healed. It’s called the gate control theory.”
In 1974, Orsini, who was born in Hudson, Mass., was 14 and pitching in a baseball game. The batter smacked the ball, which hit Orsini in the face. His cheekbones shattered, his nose fractured, and he lost vision in one eye. To most of us, the ordeal of treatment and healing from such an accident would seem horrible enough. To Orsini, who’d love to have been faced only with surgeries and recuperation, the accident awakened the beast that lived inside him. His injuries healed; the pain in his eyes and face remained intense.
In 1985, Orsini’s CRPS “went full body,” as he described it, after a car accident that left him with a broken back and two torn rotator cuffs. Again, the injuries healed; the pain remained.
Doctors were mystified. Some suggested he was a prescription drug addict. Others said he was looking for attention. A pain management specialist told him he should buy, not rent, a wheelchair.
Finally, in 1993, Orsini received a real diagnosis: RSD. The verdict didn’t come with a cure, but it affirmed that Orsini’s horrific condition was real and had a name. It was good to know he wasn’t crazy and he wasn’t alone.
Orsini’s had numerous surgeries, including a corneal transplant; lived in bed for years; depended on a wheelchair several more; fought his way to ambulation, relapsed, and fought again; enjoyed three remissions, each ceasing due to a physical calamity, such as the time he slipped on a spilled drink. Orsini takes pain medication every day. He said it takes the edge off so he can function.
CRPS is hereditary, Orsini explained. It waits quietly and then stirred to wakefulness, it attacks. Some people with CRPS have localized hurting; others, like Orsini feel pain all over. His eyes hurt the most, however, “as if somebody’s jabbing a knife in them at the same time that someone has poured gasoline in them and lit them on fire,” he described. Orsini said his pain level is 8.5 out of 10 on good days; 10 on bad ones.
It’s the sort of agony that ruins lives and baffles the medical community. So far, the best that doctors have offered Orsini are “borrowed drug therapies,” he shared, such as medication for fibromyalgia. Only recently has CRPS been declared a rare disease by the National Organization of Rare Disorders (NORD), explained Orsini, and thus is being researched.
“It’s the first time ever in history that they are actually studying CRPS-specific medication,” Orsini said with enthusiasm.
Orsini is sharing the good news with CRPS victims throughout the United States, especially those whose anguish is leading them to consider suicide. With his mother, who lives in Maine, and his fiancé and fellow Hickory resident, Anjanette Lee, Orsini mans a website, www.rsdhope.org, that offers up-to-the-minute CRPS information (Orsini talks regularly with doctors and researchers), his personal story, information about support groups, and an email address and phone number.
Orsini’s become not only possibly the most informed CRPS patient in the U.S., but he also has made it his mission to share his knowledge with the world and serve as a listening ear to CRPS patients – many of whom are teenagers.
“We connect people with mentors,” he explained.
Orsini said there are 200,000 CRPS patients in the United States. “The key to surviving this disease is information,” Orsini pointed out. “You have to be a key member of your medical team.” He predicted that his website, which has been up and running for 20 years, “is going to hit 19 million visitors by the end of 2015.”
Getting back to the fact that these mild days are balm for Orsini, he said he’s lived all over the United States in an effort to find a climate that hurts him the least. Besides a temperate climate, the Hickory area offers Orsini physicians aware of CRPS and who help him deal with his pain; a quiet neighborhood where he and Anjanette Lee, who has multiple sclerosis, can walk; a church, First Presbyterian, that he loves; and a nearby school, Jenkins Elementary, where he and Anjanette volunteer.
“I think when you’re surrounded by kids, that energy, that laughter, that innocence is infectious,” said Orsini. “It’s a therapy.”
Orsini’s organization, American RSDHope, is a registered 501(c)(3) non-profit group that works to raise awareness and funding for research while providing information and hope to people with CRPS. Learn more about American RSDHope at www.rsdhope.org.