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Patients using opioids for chronic pain: Don't stigmatize us

The National Safety Council says more Americans are dying by accident, and opioid abuse is one of the leading causes. Toby Talbot/AP

As the nation struggles with an epidemic of opioid abuse, KPCC is launching an occasional series in which we'll share your stories of dealing with pain, and offer experts' advice on how best to manage it. Share your story and insights through the Public Insight Network.

Kelli Glazebrook of Fresno lives with chronic pain.

Glazebrook, 38, has a rare autoimmune disease called Behcet's disease. It causes blood vessel inflammation throughout her body and has led her to develop other conditions, including rheumatoid arthritis and spinal degeneration.

She says she generally manages her pain through healthy eating, yoga and meditation. Glazebrook takes a high dose of ibuprofen when her pain escalates. But when her pain really flares up, she says, it's hard to think, she feels grumpy and it's hard to eat.

Her doctor has prescribed Vicodin for moments like these, when she needs short-term relief from what she calls "breakthrough pain."

"The opioid, if I'm in a really bad place, lets me reset it almost," Glazebrook says, "where I can get something to eat, I can take a nap, or go to sleep, or wake up the next day, and it kind of snaps that cycle, breaks it a bit, so that I can get back to doing what I normally do." She says she does this once every couple of weeks.

Amidst an epidemic of opioid misuse and abuse, health officials and medical providers are trying to crack down on the use of opioids for chronic pain. While the drugs are effective for treating short-term, acute pain, their long-term use is associated with an increased risk of accidental overdose, addiction and death.

"We don't fill these types of prescriptions"

Glazebrook says she takes the occasional Vicodin as part of a pain "toolkit" that she and her doctor have developed to manage her disease. Still, she says she sometimes feels stigma for using the painkillers.

She recalls one time when she tried to refill her prescription and a pharmacist told her: "We don't fill these types of prescriptions here."

She acknowledges that the pharmacist might have been responding to calls to curb opioid misuse, but says it put her in an awkward situation. She had to call around to find another pharmacy to fill her prescription.

"I just don't want to be that person that looks like they're shopping around, which is why I try to go to the same places all the time for everything – same pharmacy, same doctors," she says. "Even when you try to do everything 'right,' it doesn't get you anywhere."

New Centers for Disease Control and Prevention guidelines say opioids are not the preferred treatment for chronic pain and, as this epidemic rages on, doctors are mainly focused on reducing people's opioid doses or getting them off of them altogether.

But each case is different. A big question for doctors is, "How do we safely prescribe medications?" says Dr. Bharath Chakravarthy, a UC Irvine researcher focusing on opioid abuse, misuse and addiction.

"It's not just 'yes' or 'no,' it’s safely prescribing the medications that are necessary, for people to obtain relief and live their lives, without causing harm," he says. "That's individualized to each patient and obviously can change, even within the patient."

"I just want compassion"

Marla Liebling uses a combination of opioids to blunt chronic pain stemming from a bad femur fracture more than 10 years ago. The 68-year-old Redondo Beach resident expects to be on the medications for the rest of her life.

She says she's dependent on opioids, but not addicted to them. (Dr. Chakravarthy says there is a real distinction here, with addiction being characterized by a loss of control.)

When she doesn’t take them, "I begin to go into withdrawals," says Liebling. "I'll begin to maybe sweat a little bit, or feel queasy, or shake. Sometimes I'll actually forget to take my opioids and then my body will tell me that it's time."

Liebling takes the opioids – Norco, MS Contin and Opana – under the guidance of a pain management specialist, whom she describes as being "on my team; he's like a cheerleader."

"The less I take, the happier he is," she says, adding, "I'm on less opiates now – even though it sounds like I'm on a lot – I'm on less now than I have been since 2005."

Liebling, too, says she's endured stigma for using opioids to treat chronic pain.

"One of my sisters just started speaking to me again, when she realized that the opioids aren't affecting who I am or how I behave," she says. "It's affected my relationship with my family more than anybody else; everybody else understands, but family can be the most critical."

She acknowledges that her family had cause for concern: About 10 years ago, she was also on a benzodiazepine, a tranquilizing medication.

"I would probably take more than I should have and I would slur my words, and I would appear to be really out of it," Liebling says. She went to rehab after a family member intervened.

While there are some patients who require opioids for chronic pain, Dr. Chakravarthy says, "the pendulum has swung so far to the other side that there is a little bit of stigma now."

He says it's unfortunate for those patients who are using opioids appropriately, under the guidance of a doctor, but it's critical to also address the larger issue of tens of thousands of deaths caused by over-prescribing and overuse of these pain medications.

Meanwhile, Glazebrook and Liebling both ask for one thing: compassion.

"I don't want stigmatization, I don't want to be called a drug addict, I just want compassion for what I'm going through," Liebling says. "Other people that don't have pain don't understand what chronic pain feels like, nor do they understand the reasons for taking opioids. All I would like is some compassion."

What is your experience with using opioids or other treatments to manage pain? You can share your story and insights with us through the Public Insight Network.