By John Barnhart
Wednesday, December 13, 2006 10:54 AM EST
Ricky Baker lives in constant pain.
“I always was an outside person,” said the 47-year-old Bedford County resident. “I’ve worked all my life, since seven or eight years old. All I knew was work.”
He used to work for the city of Salem as a small engine mechanic. At the same time, he had his own business doing small engine repair, landscaping and mowing.
Now, he can’t work with his hands. Some days, he can’t even get out of bed. He formerly wore a size nine shoe but now wears size 13 shoes because his feet are swollen. He can’t put a boot on because his ankles lock.
He has pain and muscle spasms in his legs and must keep the left leg, which won’t bend at the knee, level with the hip. When he gets around, he needs either a crutch or a wheelchair.
Baker has Complex Regional Pain Syndrome/Reflex Dystrophy Syndrome (CRPS/RSD). According to the RSDS Association, a national organization that focuses on this syndrome, it was first described by a Philadelphia doctor named S. Weir Mitchell. Mitchell had been a surgeon in the federal army during the War Between the States and noticed that some men continued to complain about severe pain long after a wound, typically to the arm or leg, had healed.
Normally, CRPS/RSDS, with its hallmark of continual excruciating pain, occurs after some physical trauma and 15,000 Americans develop it each year. However, according to Jim Broatch, the RSDS Association’s president, nobody knows what causes it. Even a simple injury can trigger it and many can’t think back to a specific incident.
“Even now, we don’t know why some people get it and some don’t,” Broatch said in a phone interview.
Baker can’t remember for sure. He recalls having surgery on his shoulder. The syndrome later started in that shoulder, spread to his neck and the opposite shoulder and eventually spread down his left side to his leg, then to his right leg.
It’s hard for him to focus his thoughts because of the constant pain.
Another feature of the syndrome is hypersensitivity to touch. Baker said that the shower spraying on his legs sometimes makes them feel like they are being set on fire.
It took him 10 years to get his problem properly diagnosed, a tremendously frustrating process. He finally got a diagnosis after doing Internet research and discovering a description of what he was experiencing. He took this to his doctor and the doctor agreed.
The long wait created a problem. Baker said that he had already deteriorated too much.
“The sooner it gets caught, the better off the people are,” Baker said.
Broatch noted that there is no gold standard for diagnosing CRPS/RSDS. He said it’s called a syndrome because it’s a collection of signs and symptoms. This is why it often spreads from the point where it started to other limbs by the time it’s finally diagnosed.
Baker said that the pain first started with bad headaches. At one point, a doctor thought his problem was from pulled muscles in his neck.
As it progressed, his legs began “locking up.” There were times when he would crawl in bed and sleep all night with his legs cramped to his chest. Occasionally, it would go away, only to come back worse than ever. They swelled, were discolored and felt hot all the time.
By 1995, he was unable to work.
“I cried my eyes out,” Baker recalled. “I felt like it was the end of my life.”
Baker sleeps only two or three hours per night. The pain never goes away and sometimes it’s so bad it leaves him sweating and sick. He is constantly on pain medication and has to change medications from time to time because their effectiveness starts decreasing.
“I take over 30 some pills a day,” he said.
Broatch said that CRPS/RSDS is hard to treat.
“Anyone can have trouble getting treatment because there are no medications indicated for this condition,” he said.
According to Broatch, this makes it especially difficult for sufferers who depend on Medicaid to pay for the drug costs.
The pain is so bad and so unrelenting that sufferers sometimes commit suicide. Baker said that he was in Lewis Gale Hospital in Salem at one point and was ready to jump out of a third floor window. Then, he said he saw a Bible, picked it up, hugged it and spent the night hugging it.
“That’s what saved me, the Bible,” he said.
For more information about CRPS/RSDS, go to the RSDS Association’s Web site at www.RSDS.org or call 877-662-7737 toll-free.