Edie Caito discusses the pain caused by her fibromyalgia, which she has treated with prescription opioids since 2009. Caito’s access to the medications she needs has gradually become more restricted, in part due to the opioid addiction epidemic.
Every time Edwina Caito heads to the emergency room, she braces herself.
She knows that the doctors will ask her, as they do everyone else, about her pain level. Then, they’ll check her chart and note that she takes a powerful opioid pain medicine daily to soothe her fibromyalgia.
Suddenly, extra streng
th Tylenol is all they will offer her.
“I’m looked at as an addict,” said Caito, 52, who said she has never abused the legal opioids she takes on a regular basis. “I feel this stigma every single day: You’re a chronic pain patient, you must be an addict.
The backlash against the excessive prescription of these drugs has stigmatized many who legally take prescribed medications linked to the nation’s largest-ever drug crisis. These patients live in fear that the efforts to curtail the use of these drugs will increase with time, eventually making them impossible to access. And some wonder if in the effort to stem the tide of opioid addiction, society has inadvertently turned its back on patients with chronic pain.
The Centers for Disease Control and Prevention estimates that about 11 percent of adults, or more than 25 million adults, in the United States lives with daily pain. One in five with noncancer pain who have pain-related diagnoses are prescribed opioids.
How it happened has become a familiar story. Powerful new painkillers, such as Oxycontin, hit the market in the 1990s and the medical field made pain the fifth vital sign. Prescriptions of opioids soared and so did abuse of them that for some eventually turned into abuse of illicit drugs, such as fentanyl or heroin. Like the legal medicine, these two drugs fall into the category of opioids, which includes both natural and synthetic substances that resemble medicine derived from opium.
About 15 percent or more of those prescribed opioids eventually develop substance use disorders, according to Dr. Steven Stanos, president of the American Academy of Pain Medicine and a pain management specialist at the Swedish Medical Center in Seattle.
Statistics suggest that the longer someone remains on these legal medications and the higher the dose, the more likely he or she is to develop a substance use disorder. Furthering the opioid crisis, as more of these pills became available in the community, some people started using them recreationally and also fell into addiction.
With the number of overdose deaths soaring, numerous interventions aim to turn the tide. Drug take back programs began to remove unneeded opioids from the community. Law enforcement stepped up its regulation of so-called pill mills, clinics that handed out these opioids to all comers for a fee. And, doctors were encouraged to change their prescribing habits to seriously decrease, if not discontinue, their use of opioids all together.
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That led to another set of victims, many say: chronic pain patients.
“Legitimate patients with chronic pain are being forgotten,” said Paul Gileno, president and founder of the U.S. Pain Foundation. “The disease of addiction is taking over the disease of pain and everybody is forgetting about the pain patient.”
Caito, a resident of the Center Grove area, agrees that often it feels like pain patients suffer in the dark.
“Nobody is hearing us, because everyone on the no-opiate bandwagon is screaming the loudest and we don’t have a voice,” she said.
In an attempt to rein in the number of people dependent on opioids to manage their pain, the CDC over the summer released a set of guidelines for treating such patients. But these guidelines did not effectively address how to handle a chronic pain patient who is already taking opioids, Gileno said.
Others have expressed concern that the medical field has been too zealous in its efforts to stem opioid use. In an article in the Journal of the American Medical Association in June, an Indiana University School of Medicine professor discussed the many unintended consequences of the backlash against opioids. Even referring to an “opioid epidemic” contributes to the problem, said Dr. Kurt Kroenke, as that term usually applies to a widespread, highly contagious disease, rather than one that hits only a small percentage of those exposed.
Patients in acute pain, such as those with a broken leg and those in chronic pain, could be considered “collateral damage” of the situation, said Kroenke, a research scientist at the Roudebush VA Medical Center and the Regenstrief Institute. While Kroenke agrees that doctors have been too free in prescribing opioid medicine, which should be used as a last resort, he said in a recent interview that many of those prescribed such medicines in the first place had good reason for them.
“By getting rid of prescribed opiates, I’m concerned about pulling the rug on the millions of Americans who have been on opiates,” Kroenke said. “I worry about the people who are on opiates for chronic pain and who are good citizens who are being pressured to be unilaterally withdrawn.”
Many people who fall into this category have found themselves having uncomfortable conversations with their doctors in recent years. Many doctors require their patients on opioids to submit to random pill counts and urine screens to make sure they are taking them appropriately.
Even when a doctor may be sympathetic, the legal system can tie his or her hands in terms of how much pain medicine he or she can prescribe. Four years ago, Caito was on 10 milligrams of opioids up to four times a day to help her cope with the pain. The primary caregiver for her adult son who is mentally disabled, Caito could not just take to bed when the pain was greatest.
At the end of 2013, a new state law went into effect, limiting how much physicians could prescribe. Caito’s doctor cut her prescription in more than half, lowering the dose and prescribing only 59 pills a month. Caito understood why he had to do that, but she was frustrated by the new law.
“I didn’t feel that (then Gov. Mike) Pence had a right to go into my medicine cabinet or to dictate how my doctor treats me,” she said.
Afraid of further crackdowns on the use of opioid medicines, Caito continues to search for other ways to alleviate her pain, from Epsom soaks to muscle rubs. About half a year ago, she tried CBD oil, controversial in its own right. For the first time in years, Caito could garden, an activity she loved before her pain marred it for her. Three months ago, she went to her doctor and asked him to decrease the dose of hydrocodone she takes daily for her pain.
Insurance companies may also dictate how much a doctor can or cannot prescribe. Last year, Anthem adopted measures to decrease the number of opioids dispensed. The insurer limited coverage for those starting on opioids to seven days. Those deemed at risk for developing an opioid use disorder were told they had to fill all their prescriptions at a single pharmacy. In one year, Anthem decreased the number of prescriptions its members received by 12 percent.
Buy PhotoNorco, or hydrocodone, is the prescription taken by Edie Caito since 2009 to manage her fibromyalgia, seen Thursday, Oct. 19, 2017. Due in part to the opioid crisis, prescription opioids have become increasingly difficult for patients to receive. (Photo: Jenna Watson/IndyStar)
This program and other insurer initiatives may also have unintended consequences for chronic pain patients. Patients who have long been taking opioids and find their insurer suddenly denying coverage for them may have to either pay out of pocket or face going into withdrawal, said Kimberly Sharp, director of pain management for Community Health Network.
One reason doctors have grown so reluctant to prescribe opioids for chronic pain is a growing body of research that suggests that for some patients over time these drugs sensitize the nervous system, making it even more susceptible to pain, a condition called opioid induced hyperalgesia.
Alarms should sound in a doctor’s mind if he or she keeps increasing an opioid dose but the patient complains the pain has not improved. In such cases the doctor and patient should be more attentive to what the patient can or cannot do rather than how much pain the patient reports, a more subjective measure, Sharp said.
“If we have increased a dose once or twice and their function is not getting them to the goal, then that’s not working. The approach is that we need to back that down and look for another option because that option isn’t getting you anywhere,” said Sharp, an expert in pain management nursing. “If we had a diabetic on a medication and we weren’t getting their blood sugar controlled, we would change that to something different.’
As director of Eskenazi Health’s Integrative Pain Program, Dr. Palmer Mackie focuses on finding pain relief for his patients without relying on medicine. About 15 to 25 percent of the patients referred to his clinic arrive with an alcohol or opioid use disorder.
When considering if a patient should turn to opioids for pain management, Mackie does not ask whether the patient needs the drug but considers the risk/benefit ratio for that person on the medication. Only a small percentage of those started on chronic opioid therapy wind up doing better on it, Mackie believes from his experience treating pain.
“More people are either harmed or not benefitted than the percentage of people who receive meaningful benefit,” he said. “The longer you’re on, the more likely you are to have an opioid use disorder. … If you do a compassionate or therapeutic withdrawal of opioids, most people’s function improves and their pain either gets better or stays the same.”
Taking opioids daily
Angel Patrick, 51, is one of a small percentage of Mackie’s patients who take opioids daily. In 1979 at age 14, she had back surgery to treat her scoliosis. Doctors told her then she could expect to be on pain pills the rest of her life, but she eventually weaned herself off them.
Fifteen years later, she broke her back when a 300-pound patient at the rehabilitation facility where she worked toppled onto her. Since then, she’s relied on opioids to help keep her pain-free enough to work as a cook.
The west-side resident takes 10 milligrams of methadone three times a day and 5 milligrams of Percocet twice a day to manage her pain. She uses caffeine as well to help her decrease her pain and regularly attends water therapy classes. She also studiously avoids accepting pain medicine from anyone other than Mackie.
“As long as a person is not abusing their meds, they can live a fairly normal life, at least I do,” she said.
For 11 years, Bonnie Atkins, 63, lived as a normal a life on morphine as she could. More than 20 years ago, the Wilkinson resident fell, broke some bones and after a botched surgery spent two years in a wheelchair. She can walk now but struggles with pain and relied on the opioid morphine to help control it.
Last year, Atkins fell ill and went to the hospital. An emergency room doctor took one look at her chart and said: “Go back home. I’m not going to give you any more drugs.” Only after taking Atkins’s temperature, which was sky high, did the emergency room doctor admit her to the hospital where she stayed for 12 days for treatment for sepsis.
For years, her pain doctor urged her to try Suboxone, technically an opioid as well but one that produces less euphoria than other drugs in the class. For that reason, doctors often use it to treat opioid addiction, as well as to treat pain.
Associating Suboxone with heroin addicts, Atkins refused to switch her medication. Recently she gave in and agreed to try it. The Suboxone made her ill, so her doctor prescribed Belbuca, a sublingual form of buprenorphine. That too made her ill, though not as sick.
After about a month, Atkins’s doctor said she could go back on morphine or have a pain pump placed in her back. She’s considering getting the pump, afraid that in the future doctors’ ability to prescribe pain pills will be further compromised.
It angers her that those who misuse these drugs have impeded access for those like herself who benefit from them, not that she wants to have to rely on these drugs .
“I’ll be on some kind of pain meds until the day I die,” she said. “But it’s not wonderful to be on pain pills. If I could just not take another pill the rest of my life, it would be wonderful. I can’t tell you how wonderful that would be.”
Call IndyStar reporter Shari Rudavsky at (317) 444-6354. Follow her on Twitter and on Facebook.
IndyStar’s “State of Addiction: Confronting Indiana’s Opioid Crisis” series is made possible through the support of the Richard M. Fairbanks Foundation, a nonprofit foundation working to advance the vitality of Indianapolis and the well-being of its people.
This is republished article. Originally this article was published by https://www.indystar.com