Cindi Scheib wanted to die.
A three-day weekend spent jumping and dancing on Labor Day 2014 had left her with a neck injury – specifically the cervical spine – that was possibly an exacerbation of an unrecognized mountain biking injury earlier that year. To make matters worse, her doctor performed the surgery to fix the injury on the wrong part of her spine.
Now 54, Scheib has lived with constant neck pain and other unusual sensations throughout her body ever since. These sensations, including electrical shocks down her spine, buzzing, vibrating, burning sensations, ringing in her ears and sensitivity to normal noises, had gotten so bad, she said, that “I wanted to go to bed and not wake up tomorrow. This life was so bad, so horrible, that I couldn’t imagine how I was going to live the rest of whatever life I had,” says the Harrisburg, PA, nurse.
Today, the pain may be worse than it was in 2014, but Scheib is better. She says that’s because she stepped off the well-trodden path of lifelong prescription painkillers and took the less traveled road of pain management — a combination of pharmaceutical and non-pharmaceutical treatments that gave Scheib her life back.
Like Scheib, an estimated 100 million Americans live with long-term pain. Since the 1990s, physicians’ go-to treatment for constant pain has been prescription opioids, such as oxycodone or hydrocodone. Though the evidence that opioids work for long-term pain is lacking, Americans get more prescriptions for them than the citizens of any other country in the world. The prescribing epidemic has led to a national crisis of opioid misuse, overdose, and death. Now, as policymakers and health care providers work to stem the tide of addiction and abuse, patients and some prescribers worry that the changes will take pain medications out of the hands of people who truly need them.
Access to painkilling medications that can’t cause addiction, abuse, and overdose would make life easier for prescribers and could save the lives of patients.
Development of such drugs has been slow-going, in part because scientists don’t completely know how chronic pain works. They believe the body has multiple pathways to chronic pain, and that means multiple targets for painkillers. But researchers don’t have proven ways to identify which pathway is causing the pain in each person.
The non-opioid blocks the production of nerve growth factor, a substance that’s needed for certain types of pain to happen. Several other anti-nerve growth factor drugs are in clinical trials.
A team of researchers at Wake Forest University and the University of Bath in the U.K. is exploring a new kind of opioid that could relieve pain without affecting breathing or raising the chance for abuse. The new drug, only called by its chemical compound name BU08028, relieved pain in rhesus macaque monkeys. When they had the opportunity to take as much of the drug as they wanted, they didn’t abuse it. When taken off the drug, they didn’t show signs of painful withdrawal.
Although in early development, safely and successfully using the drug in this type of monkey is a key step on the path toward human clinical trials.
A second drug, also in early development, could harness the pain-relieving effects of opioids while bypassing the negative effects. The drug eased pain in mice. It’s still a long way from human testing.
The bottom line is that opioids should not be the first thing doctors try in patients who have chronic pain. The CDC’s latest guideline for opioid prescribing, released in 2016, notes that most proof of how well opioids work is based on short-term pain. It directs doctors to try nondrug treatments, such as physical therapy and talk therapy, as well as non-opioid treatments first. If those aren’t enough, before adding opioids, doctors should work with patients to set realistic goals for easing pain, with an emphasis on making the body work better rather than eliminating pain.
“We need to teach our patients that you may never be able to get rid of the pain completely,” says Joji Suzuki, MD, a psychiatrist who specializes in substance abuse at Brigham and Women’s Hospital in Boston. “So how do you cope with it? How do you restore function?”
“It’s not clear [in clinical trials] that opiates actually improve function in the long run,” she says. “In fact, there’s some evidence that people on chronic opiates lose function over the long run.” Loss of function is due in part to the side effects of these drugs, which include nausea, vomiting, and constipation. While they might ease pain, the side effects can keep a person from getting on with their life. What’s more, most people typically need to increase the dosage over time to keep getting the same level of pain relief.
HHS has compiled a report for doctors to use when treating long-term pain that summarizes the research behind many nondrug treatments and how they work.
“An opiate might bring your pain score down from an 8 to a 6.5, but if we add physical therapy, we can bring you down to a 6,” Edens says. “Ibuprofen might bring you down to 5.75. Then we’re going to get you therapy for your depression and your mood. Then acupuncture will bring you down to 5.25 and so on.”
She learned about a pain rehab program in her area that put many methods into one treatment plan. There, 2 years after that fateful Labor Day weekend, she had physical therapy, talk therapy, swim therapy, meditation training, hypnosis, yoga, and biofeedback — a treatment that uses electronic monitoring of seemingly involuntary bodily functions (such as pain) to teach a person to control it.
Health insurance plans might soon include more non-drug ways to treat chronic pain.
“I think we’re seeing some shifts within the private insurance sector in how we are paying for pain care,” says Christopher Jones, PharmD, a pharmacist and director of the National Mental Health and Substance Use Policy Laboratory at the Substance Abuse and Mental Health Services Administration. The Department of Health and Human Services is researching insurance coverage policies on treatment of long-term pain. “That’s an important step in trying to start the conversation on changing coverage policies.”
Coverage is one barrier to a varied, nondrug way to treat chronic pain. Time is another. Some people won’t want to invest the time in what might appear to be a slower approach. Still, it’s what worked for Scheib. “Everything started to gel,” she says. “I realized that my brain is adaptive. I could keep sending it the message that life is horrible and I’m dying, or I could start sending it good messages. It’s literally mind over matter.”
Scheib hasn’t gotten rid of her pain. “Actually, it’s probably worse now,” she says, matter-of-factly. But her body works better now. In spades. Incredibly, she hikes, bikes, scuba dives, and rappels down waterfalls. She attributes much of her improvement to changing her expectations.
Too often, says Suzuki, patients have unrealistic beliefs about pain. “There’s this automatic expectation that pain should be completely eliminated.”
That’s what’s changed for Scheib. “Before, I had an expectation of a perfect life, but now, I’m reprogramming my brain. I have a realistic expectation to accept and adapt. The most powerful tool in my toolbox is my ability to be positive and hopeful.”