Still Seeking Hope after Decades of Pain
Ron Smith was familiar with pain. He spent his career working a physical job at a telephone company. The work took a toll on his body. He fell off a pole once and out of his truck another time. A bad car crash resulted in several fractured vertebrae. What the 75-year-old was not prepared for was the red tape and restrictions that come with treating chronic pain.
“I always thought you go to the doctor, and they fix it,” he says. “It’s not that easy.”
A HISTORY OF PAIN
Ron lives with multiple painful conditions: back pain, COPD, restless leg syndrome, peripheral neuropathy, and a knee replacement that never healed completely. He’s had sepsis and two heart attacks. Following gastric bypass surgery, Ron was diagnosed with diabetes, and then diabetic neuropathy.
“It started with restless leg syndrome in the beginning,” he says. “Then the [nerve pain and neuropathy] went to the legs, into the extremities, and it started getting worse down into my feet. The worst part was just in the upper part of the legs. It got worse and worse. And the number of narcotics for pain relief increased.”
That was almost a decade ago. During the subsequent years, Ron’s tolerance for the pills he takes to manage the pain has increased.
“They couldn’t find anything that would assist [with the pain] except a narcotic,” Ron says. He is allergic to pregabalin, a popular treatment for neuropathy, and can’t take non-steroidal anti-inflammatory drugs (NSAIDs) because of his gastric bypass surgery. “They tried all kinds of medications, but nothing would help,” he shares. “So it was narcotics at a very low dose.” But his dose kept increasing, as his pain intensified and he built up a tolerance to the medication.
Ron once told a doctor he thought he was addicted to his medication; he says his doctor quickly assured him it was not an addiction, but a dependency. “I said, ‘What’s the difference?’” he recalls. “I had a knee replacement in my left knee, and it was extremely painful for me because the medications didn’t help me like they would somebody else because I built up such a tolerance.”
Ron’s pain management doctors have tried lidocaine infusions, injections, and multiple surgeries ranging from knee replacements to ulnar nerve release surgery. He says he sometimes feels defective because nothing has worked.
“I’ve had so many things happen over the years,” he says. “Things have gotten worse and worse. And the medication is what bothers me the most. I don’t like taking all these narcotics because it does help now, but it won’t necessarily help next year.”
His neuropathic pain causes a constant dull ache in his legs, one that remains at a 4 or 5 on a pain scale of 1-10 at all times, Ron says. He also experiences back pain as a result of the car crash he was in that he describes as simultaneously “sharp and dull,” with the pain changing based on his activity levels.
“If I get stupid and go out and work in the yard or do stuff like that, the neuropathic pain will jump up to an 8 or more,” he shares. “Then I have to get in the house and lay down and put ice on the area and raise my legs until it goes away in a day or two.”
MEDICATIONS PROVIDE RELIEF, BUT AT A COST
There are a lot of restrictions that come with taking pain medications. When Ron and his wife Darcy moved from California to Arizona, where they live now, he had a three-month waiting period to see a new pain doctor and renew his prescription.
“I said, ‘You don’t understand, if I don’t take these pain meds, I’m going to be in a world of hurt. I’m already going through withdrawals, and they will get worse,’” he recalls. But due to practicing guidelines and regulations, as well as the waiting period to see a new specialist, Ron could not get any doctor to help him. “I went through withdrawals, which was awful,” he shares. “Cold turkey. I was up all night for three days walking around taking showers every half hour, doing everything I could to help the pain. It was so bad.”
With a new pain management doctor in Arizona, Ron is prescribed several medications to keep the pain at bay each day. Each monthly prescription is monitored extremely carefully. Darcy takes time each week to count out the pills and doses. Ron worries about dropping or losing a pill and notes that the restrictions doctors implemented in prescribing make it challenging to manage his pain. “They said, ‘Oh well, sorry. The DEA will come after my license, and I can’t risk it.’ Well, what about me?” he asks.
He admits he often pushes his limits and struggles to rein in his once-active lifestyle. “I used to ride motorcycles, working on them with a beer or cigar. We had a wonderful life riding and having fun, doing what we enjoy,” he shares. “Now, I sit at home. I sit home all the time. Darcy goes to the store, and I stay home.” He is unable to drive because of the medications he takes, and he falls often because of the numbness in his legs and feet.
After Ron retired from the phone company, he and Darcy traveled the country in an RV, working at and managing different campgrounds. Now, travel is extremely difficult—both logistically because of needing his prescriptions refilled each month, and physically, because if he doesn’t get up to move around, the neuropathy gets worse.
A CONTINUED SEARCH FOR HELP, AND HOPE
Ron tries to keep his spirits up by staying busy, but admits depression is a problem. There are limitations on what he can do. Due to several falls, his pain management doctor does not want Ron doing physical labor or using a ladder. “I never knew the restrictions would be like this,” he says.
Ron says staying busy helps him keep his mind off his pain—and his eyes off the clock as he waits for his next dose of pain medication. He works in the yard and enjoys making updates to his home. “It’s important to keep your mind on something,” he says. “Even if you don’t enjoy it, it’s something to keep you busy.”
Ron and his pain management team continue to hunt for alternatives to help with his pain. Next, he is going to try a spinal cord stimulator, a medical device implanted in the back that sends electric pulses up his spine to disrupt nerve signals that cause the brain to register pain. He already undergoes spinal ablation, a treatment that applies heat to nerve tissue to reduce pain, every six months.
“The goal is to get to where I can maybe come down off of this medication. I don’t like taking this stuff. But I need to; otherwise, the alternative is worse,” he says. “There’s such a stigma that comes along with taking these drugs. All I want is to feel better.”
He says that some people look down on him for using opioids, describing a time when he visited a pharmacy to pick up his prescription and, because of a clerical error, an employee loudly announced that he had already picked up his prescription elsewhere.
“People were looking at me like I was trying to pull a fast one on the pharmacy to get more meds,” he recalls.
He adds, “It’s so depressing dealing with this whole thing. Life is no longer fun or rewarding. My whole life revolves around pain, doctor visits, and pharmacies.
“All I want is to be pain free and a productive member of society.”
“There’s such a stigma that comes along with taking these drugs. All I want is to feel better.”