On good days, Samantha Carter can almost block out the burning sensations that occur in her arms, legs, hands and feet. She homeschools her daughter and blogs about her life to inspire others who deal with pain daily. She tries to enjoy time with family. She strives to live a normal life.
On bad days, Carter can’t get out of bed. She attempts to numb persistent aches caused by fibromyalgia with heating pads, Biofreeze and compression gloves. When the pain flares, her goal is to be as comfortable as possible. Relief isn’t realistic.
“I’ve tried a lot of different methods,” Carter told DrugRehab.com. “There were periods where I would get regular massages. I’ve done three or four rounds of physical therapy. I do a lot of hot and cold therapy. I’ve used essential oils. I’ve used Biofreeze and random bracelets. I’ve tried anything that I can get my hands on that is legal and safe.”
For 16 years, doctors declined to prescribe opioids, such as Vicodin, Lortab or Percocet, to Carter for long-term pain relief. She’s received opioids after major surgeries or tests, but the prescriptions lasted less than a week.
Carter refuses to turn to alcohol or illicit drugs for relief. She’s spent hours researching her health conditions. She’s delved through studies for answers. And she’s come to the conclusion that opioids are her best option.
“The more that I research, the more that I feel like I’ve been treated inhumanely for the past seven years,” Carter said. “I’m an adult. I have no history of addiction. I have no history of substance abuse. I have never tried any recreational drug. I don’t drink much. I’m in a stable home. There are no visible risk factors [for addiction].”
Like many other people living in pain, Carter believes that opioids may be the only medications that help her find relief. She’s run out of other options. But the drugs are becoming more difficult to access.
The more that I research, the more that I feel like I’ve been treated inhumanely for the past seven years. I’m an adult. I have no history of addiction. I have no history of substance abuse.
Increasing rates of prescription drug addiction and opioid overdose deaths have put pressure on doctors to reduce prescriptions for opioids. New guidelines urge doctors to be cautious when prescribing the medications for chronic pain.
A 2016 survey of long-term prescription opioid users conducted by the Washington Post and the Kaiser Family Foundation found that two-thirds of participants were concerned that efforts to combat opioid addiction would make the medications more difficult to access for people in chronic pain.
The cautions issued for opioid prescribers are the opposite of what doctors were told in the 1990s. The change of attitudes and opinions leaves people like Carter feeling as if they’ve been forgotten. More than 25 million people experience pain on a daily basis, according to the latest numbers from the National Institutes of Health.
About 57 percent of people with chronic pain who responded to the Kaiser Family Foundation survey said prescription opioids made their quality of life better. But 16 percent said the medications made their quality of life worse. One-third reported being physically dependent or addicted to opioids.
These diverse experiences exemplify the arguments for and against the use of opioids for the treatment of chronic pain.
Mixed Messages on Safety and Efficacy
Throughout the 1990s, pain management advocates and pharmaceutical companies publicly supported increased access to opioids. Some advocates claimed that opioids were safe for long-term use and that the risk of addiction was exaggerated.
The federal government encouraged doctors to check for pain and treat it adequately. Several organizations called pain the fifth vital sign.
Many of the safety claims were based on faulty science. Hundreds of thousands of people became addicted to opioids as access to the drugs increased. Drug overdose deaths skyrocketed. Access to prescription opioids also facilitated an increase in heroin use, according to a 2012 study published in the International Journal on Drug Policy.Read more about what caused the opioid epidemic
"For most types of chronic pain, opioids are inappropriate,” Dr. Chris Johnson told DrugRehab.com. “There have been no studies showing that opioids are effective for long-term management of back pain, fibromyalgia, headaches or arthritis. That has always been true.”
Johnson serves on the boards of Physicians for Responsible Opioid Prescribing and the Steve Rummler HOPE Network. Both nonprofit groups advocate for cautious and responsible opioid prescribing practices to reduce the prevalence of opioid-related deaths.
The groups have lobbied Congress, the Food and Drug Administration, the Centers for Disease Control and Prevention and other major health organizations.
“The CDC, the American Medical Association and all of these great medical bodies should come out and say that due to the clear evidence of harm of chronic opioid therapy and lack of any proven benefit for most chronic pain conditions, these drugs should not be initiated any longer for these conditions,” Johnson said.
A 2015 study funded by the Agency for Healthcare Research and Quality searched for studies on opioid therapy lasting more than three months. The researchers concluded that evidence was “insufficient to determine the effectiveness of long-term opioid therapy for improving chronic pain and function.”
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When the CDC announced new guidelines for opioid prescribing in 2016, the agency reported that no studies lasting at least one year had measured the effectiveness of opioids in improving pain, function or quality of life. Despite zero evidence of effectiveness, the agency released guidelines for treating chronic pain with opioids.
The CDC does recommend prescribing opioids when all other methods have been exhausted. The agency says doctors should closely monitor patients, use the lowest effective dose and combine opioid treatment with other therapies.
Living in Pain Without Opioids
For decades, opioids were loosely prescribed by many doctors. But Carter’s doctors were cautious. She’s lived in pain for 16 years, and she’s never been prescribed opioids for long-term pain relief.
When she was 13, doctors told her she had a condition called reflex sympathetic dystrophy, also known as complex regional pain syndrome. The condition usually occurs after an injury damages nerves, but Carter said no event caused her condition. RSD causes a burning sensation that feels like sunburn on different parts of her body. It can also cause swelling, joint stiffness and muscle spasms.
As a teen, Carter’s doctors were hesitant to prescribe opioids. Illicit drug use was a major problem when she was growing up in Tennessee. They didn’t want to give an adolescent powerful narcotics. She was eventually prescribed a short-term dosage of an opioid — she can’t remember which one — to help her sleep. She took the medication only at night.
“I was always kept on a strict regimen,” Carter said. “They were never used off-label or anything like that. There were never any feelings of loopiness or a high or anything like that.”
After three months, the opioids were replaced by an antidepressant called amitriptyline that’s sometimes prescribed to treat nerve pain. One side effect of the drug is drowsiness, which helped Carter sleep. It was one of the few medications that gave her some relief, but the pain never fully dissipated.
She went to physical therapy and a psychologist for about six weeks, but she was discharged from both treatments when her pain didn’t improve. She tried a variety of nonopioid medications, but amitriptyline was the only one that had an effect.
At 21, Carter was diagnosed with fibromyalgia. She’s also been diagnosed with vaginal, bladder and groin conditions. For those conditions, physical therapy provided some relief. But once again, the pain never completely went away.
“There are a lot of different types of pain that my doctors are trying to treat,” Carter said. “Throughout all of it, being able to get pain medicine has been a huge fight. It’s been something that they resist because they want to rule out everything they can.”
Carter’s experience is representative of the research on interactions between doctors and patients in chronic pain.
"You don’t want to get into the argument about what type of pain is legitimate or illegitimate. If a person feels pain, it’s legitimate. The question is, is it still appropriate for opioids?"
A 2007 review of studies on patient-provider interactions published in the journal Pain Medicine found that people in chronic pain want to be understood. They want doctors to feel that their pain is legitimate. Doctors are more likely to focus on diagnosing and treating conditions than addressing quality of life issues, according to the review.
Johnson said that physicians must recognize that patients are in pain and that no expressions of pain are illegitimate.
“You don’t want to get into the argument about what type of pain is legitimate or illegitimate,” Johnson said. “If a person feels pain, it’s legitimate. The question is, is it still appropriate for opioids?”
The Doctor’s Perspective
On paper, adhering to prescribing guidelines seems simple. In reality, deciding whether to tell patients in pain that they can’t have medications that may provide temporary relief is difficult.
Writing for STAT, Dr. Jay Baruch described the mental anguish he felt when trying to determine whether a patient with severe tooth decay was doctor shopping for opioid prescriptions and whether opioids were appropriate or not.
“Prescribing guidelines … are well-intentioned and necessary. But they do little to address the central anxiety that makes this decision a source of distress for physicians like me,” Baruch wrote.
Doctors have to think about the short- and long-term interests of their patients, but they also have to protect themselves from legal liability. Numerous doctors have been arrested for prescribing opioids recklessly. Physicians also feel emotional attachments to their patients, and they don’t want to see them suffer.
“You want them to feel good about their visits,” Johnson said. “They’re in a system that is charging them so much money and doesn’t really give them other good options. To say, ‘I just can’t do that,’ is a real challenge.”
He said doctors know that health care is expensive, and a lot of patients are paying out of pocket for appointments. Many of them don’t have access to alternative therapies to treat pain.
“How do you tell them no if they tell you they want this drug?” Johnson asked. “You’ve only had a few minutes to see the patient. You can’t give them intensive chronic pain therapy because that’s not invested in [by the health care system]. You have to give them some satisfaction from their meeting. It’s really hard to say no.”
Searching for Solutions
Carter has been in and out of doctor offices in the past two years. She was tested for autoimmune diseases. She had three biopsies. She had a cystoscopy, a procedure that allows doctors to examine the bladder. She received stem cell injections to attempt to heal nerves. She searched for answers on her own, and she kept reading that opioids worked for other people.
She found a study that showed that fibromyalgia pain can be relieved by tramadol, an opioid, when used in combination with acetaminophen, the generic name for Tylenol. The 2003 study published in the American Journal of Medicine followed 313 patients for 91 days and found no serious adverse effects associated with the treatment. She told her doctor about the study during her next appointment.
“I just started bawling and telling him, ‘I can’t handle this anymore. I only need enough for the days that I can’t move.’ And I said, ‘Honestly, even 10 a month would help.’ So that’s what he gave me,” Carter said.
Her doctor wrote a prescription for 30 tramadol pills for three months with no refills. To relieve pain around-the-clock for one month, she’d need at least 120 tramadol pills. She was given an average of 10 per month.
Tramadol is less potent than hydrocodone, oxycodone and many other opioid pain relievers, but Carter said she was scared to ask for anything stronger.
On bad days, the tramadol doesn’t do much to relieve pain, she said. Sometimes she chooses not use the medication when the pain is bad because the effect is so minimal. She’d rather save it for good days when the medication can provide some relief and she can almost experience a day without pain.
Mandated Limits on Opioid Prescribing
Despite increased awareness about the risks of prescribing opioids, some doctors still overprescribe. Opioid prescriptions peaked in 2010 before decreasing each year through 2015, according to a 2017 CDC report. But prescription rates are far from where they were in the early 1990s.
One solution to reduce overprescribing is to mandate limits on the duration and dosage of opioid prescriptions. In 2017, Maine limited physicians to prescribing the equivalent of 100 milligrams of morphine per day to most patients being treated with opioids. Morphine is the standard that other opioids are compared to.
Other states have limited prescriptions to a week or less. In September 2017, the governor of Florida proposed a three-day limit for opioid prescriptions in most situations and a seven-day restriction for rare circumstances.
CVS Health has also announced that it will fill opioid prescriptions only for seven days when the drugs are prescribed to treat short-term pain.
The limits have outraged people who experience chronic pain. Many believe that restrictions to treatments for acute conditions are a stepping stone toward restrictions for long-term conditions.
"It scares the crap out of me,” Carter said. “The discussions right now are geared more towards acute conditions. … But I think it’s unnecessary. I think it’s ill-advised, and I think it’s going to make life more difficult for people like me.”
But physicians who advocate for responsible opioid prescribing believe the limits don’t go far enough.
“Seven days is still about 56 tablets,” said Johnson, who is the chair of the Minnesota Department of Human Services’ Opioid Prescribing Work Group. “That’s a lot of opioids. Our recommendations are going to be to limit acute opioid prescriptions to less than 100 milliequivalents. That’s like 20 tablets of Vicodin.”
How Tolerance and Dependency Complicate Opioid Therapy for Chronic Pain
Opioids effectively relieve pain for a few days before tolerance develops and a person starts to become dependent on the medications. Tolerance and dependency are natural adaptations that are different from addiction, which is a physical disease characterized by behavioral problems. Addiction affects a relatively small portion of people who use opioids.
Every person who takes an opioid develops tolerance and dependence, according to a December 2016 article in the New England Journal of Medicine. In the article, Drs. Nora Volkow, the director of the National Institute on Drug Abuse, and A. Thomas McLellan, the former deputy director of the Office of National Drug Control Policy, explained misconceptions associated with opioid abuse and chronic pain.
Opioids stop working because they are [similar] to our own endorphins, which are our own reward chemicals. The more endorphins you have, the more the body pushes back.
They described how our bodies become tolerant to the pain-relieving and pleasure-causing effects of opioids more quickly than they adapt to the drug’s effects on respiration. High doses of opioids can slow breathing so intensely that people die from oxygen deprivation. The only way to treat long-term pain with opioids is to increase the dose a person receives, which increases the risk of overdose.
Tolerance occurs because the brain adapts to repeated exposure to opioids. The effects of opioids become less potent, so patients have to take higher doses. Patients who use opioids for extended periods may require up to 10 times their original dose to feel any effect, according to the NEJM article.
“Opioids stop working because they are [similar] to our own endorphins, which are our own reward chemicals,” Johnson said. “The more endorphins you have, the more the body pushes back. It’s called homeostasis or negative feedback, and they stop working over time.”
Homeostasis refers to how the body naturally adapts to keep chemical balances constant. The brain naturally produces endorphins, which are chemical messengers that naturally relieve pain and cause pleasure. When a person consumes opioid medications, the brain has too many endorphins. It reacts by slowing endorphin production to make up for the imbalance.
When natural opioid production slows, the brain starts to depend on opioid medications to maintain its regular balance of endorphins. That’s why people become dependent on opioids. When the person stops taking prescription opioids, the chemical balance is too low and the person experiences withdrawal.
During withdrawal, the body naturally increases endorphin production until homeostasis is reached. This process can take several weeks, months or years depending on the severity of dependency.
Should Opioids Be a Last Resort?
For someone like Carter who has tried every other legal remedy, opioids seem like the best solution. If nothing else works, why not give the drugs a chance? She knows about the risk of addiction and the complications associated with tolerance and dependency. But she also knows the risk of addiction is lower when the drugs are used therapeutically compared to when they’re misused.
She points to a 2007 review of 67 studies that was published in the journal Pain Medicine. Researchers found that only 3 percent of patients treated with chronic opioid therapy developed an addiction. About 11 percent of participants ended up misusing the drugs. The results suggested that individuals with no history of substance abuse were less likely to misuse the drugs and get addicted.
However, other studies have produced large variations in rates of addiction among chronic pain patients. Volkow and McLellan wrote that opioid research involving patients in pain and animals has disproved the belief that pain protects against the development of addiction. Studies that “carefully diagnosed addiction” have produced rates of addiction averaging less than 8 percent. Rates of misuse in these studies range between 15 and 26 percent, according to the NEJM article.
Despite the risks, Carter said that “there is a time and place for long-term prescription opioid use, at least until a safer but still effective pain management option is found.”
But Johnson disagrees. He said that without proof of efficacy, there is no reason to put patients at risk for dependence, addiction and other health problems.
“We don’t have a study showing that it really helps, but we do know that there is a real risk of harm,” Johnson said. “That doesn’t make a treatment last resort. That makes it a nonindicated treatment. Last resort sounds reasonable, but that doesn’t work if there’s no benefit.”
Johnson points to a recent study that compared 120 patients in chronic pain who received opioids for one year with 120 patients in chronic pain who didn’t receive opioids. Both groups of patients also received nonopioid pain management therapies.
The pain levels dropped in both groups, but the pain intensity decreased more in the group that didn’t receive opioids, according to results published by the U.S. Department of Veterans Affairs.
“There was no difference in their pain after a year,” Johnson said about the study’s findings. “But the ones on opioids had a higher rate of complications. There are no studies showing that these medicines are a long-term answer for most chronic pain conditions.”
If Not Opioids, Then What?
Health providers recognize that few treatments are available to effectively treat chronic pain. For many people, no effective alternatives are available. The lack of options cost Carter a career. On bad days, it costs her days with her family.
“I had to realign my life to figure out what I can do with the limitations I have,” Carter said. “I have spent an entire week in bed, completely unable to get up unassisted, in too much pain to focus on anything like reading or television to take my mind off the agony I was in, with no relief from any of the methods available to me, and whiling away for hours crying hysterically because the pain was so intense.”
She could have gone to the emergency room or tried to convince her doctor to prescribe opioids, but she said the fear of being “treated like a pill-seeker was too great.” She doesn’t want to take pain medications every day of her life. But when the pain flares, she wants access to medications that can help her get out of bed.
“I do agree that medical providers need to use caution when prescribing any potentially addictive substance, and my heart breaks for every person impacted by opioid addiction,” Carter said. “But members of the chronic pain community are the invisible victims of this war on opioids.”
For many doctors, the risks of diversion and addiction are too great to prescribe opioids for chronic pain. Some would rather see their patients experiment with unproven methods than be exposed to the known risks of opioids.
Carter has never tried an illicit drug, but her pain has forced her to try cannabidiol, a chemical found in marijuana. Cannabidiol, also referred to as CBD oil, doesn’t cause the euphoric effects associated with THC, the psychoactive chemical found in marijuana. CBD oil is illegal under federal law, according to the Drug Enforcement Administration. But many states have legalized the substance, according to the National Conference of State Legislatures.
I do agree that medical providers need to use caution when prescribing any potentially addictive substance, and my heart breaks for every person impacted by opioid addiction. But members of the chronic pain community are the invisible victims of this war on opioids.
Researchers have studied the effects of CBD oil on a variety of health conditions, but insufficient evidence exists to prove whether it’s effective or ineffective, according to the U.S. National Library of Medicine.
Carter tried CBD oil for six weeks but never felt improvement. One of her doctors recommended that she travel to Colorado to try marijuana. She’s hesitant, but she is considering making a trip in the future. Even if it works, she isn’t willing to move away from Tennessee, where she has deep ties to extended family.
“The idea of trying to move for pain relief has come up,” Carter said. “Not in terms of medical marijuana but in terms of trying to find better care. But we have very deep roots in this area. Moving would be exchanging one type of pain for another.”
These are the options that Carter has: She can search for opinions from other doctors to see if they’ll prescribe opioids, but she may be accused of doctor shopping. She can travel across the country to see if marijuana, an unproven treatment that is associated with drug addiction, relieves her pain. She can continue to look for other unproven supplements or experimental treatments.
Or she can continue to live in pain.
While the country invests millions of dollars into research and treatments for opioid addiction, Carter and millions of others live in pain with little hope of finding relief.
But there is some hope. On Oct. 26, 2017, President Donald Trump declared the opioid epidemic a public health emergency. His speech focused on strategies for reducing opioid use and treating addiction. He also announced a partnership between the National Institutes of Health and the pharmaceutical industry to develop nonaddictive pain medications.
The partnership may be the best hope for the millions of Americans living in chronic pain. And it may be the biggest effort to treat chronic pain since the promotion of opioids by pain management advocates in the 1990s.
Dr. Christopher Johnson is an expert speaker on the opioid crisis. To contact him, visit his website.