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After opioids, learning to feel pain normally again
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After opioids, learning to feel pain normally again

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Opiate addiction

Recovering from an opiate addiction, Mary still takes prescription medications, a handful of pills twice daily to manage her pain and mitigate the damage done to her body by extended opiate use. Mary is a pseudonym used to protect her identity.

Opioid medication controlled Mary's pain from complications after a second hip surgery.

Until it didn't.

So her doctor increased the dosage -- a bump.

Which worked -- until it didn't. So he increased the dosage. Bump. And that worked -- until it didn't. So he did a procedure, which caused pain, so he increased the dosage -- bump -- and that worked.

Until it didn't.

Bump, bump -- and then another procedure -- bump.

Until relief became so minimal she got desperate and turned serious about finding the true source of her pain, which led to excruciating medical tests, more surgeries -- this time on her lower back -- bump, bump, bump.

Until last fall, said Mary, "I was up to taking two of the extended-release (opioids) daily, one in the morning and one at night, and taking eight of the immediate-release during the day."

* * *

Older pharmacists, said Lisa Neeman of the state's Medicaid program, tell her “there was a time before the '90s that if someone presented (an opioid) prescription at the pharmacy, you knew they were dying of something."

Today, bottles of Vicodin, OxyContin and Percocet fly out of pharmacies for toothaches, post-surgical care, chronic pain treatment.

The change began about 30 years ago.

Before the dawn of the new millennium, a cry arose to better address debilitating pain. Address acute pain, research said, and that reduces debilitating chronic pain -- pain that is as much about the altered nerves themselves as it is a physical deformity.

Pharmaceutical companies pushed the message, expanding the use of cheap, effective opiates. The immediate result was a vast reduction in suffering.

* * *

For most people, opiates work well for pain over the short term.

For others, like Mary -- not her real name -- they open a long, dark path to misery, addiction and desperation.

At her lowest point, last fall, Mary took repeated naps, felt loopy, suffered constipation and sweats, had weird dreams. She rarely left home, withdrew from her husband and children, stopped working and quit her God. Most days, she lay in bed watching Netflix, not caring whether she lived or died. Nurses, her children and husband took care of her.

Her memories of those days -- including the holidays -- are mostly gone. 

She grew so desperate she began searching for a new doctor.

The one she found didn't start by looking at her hip or back. Her pain, he said, resulted from the longtime interplay of her nerves with the drugs.

Opioids had changed the way her brain feels pain, so the solution would not be more pills or procedures. It would require working through pain and addiction so her body could learn to feel pain normally again. It would take months, maybe years.

"That can't be," Mary thought, then, "(but) God, he might be right."

* * *

Twenty percent of people -- give or take -- are predisposed to having an addiction, any addiction, so it's no wonder that over time increased access to opiates has resulted in more emergency room visits and fatal overdoses.

The numbers started small -- a bump.

Pharmaceutical companies offered new products. Bump.

Physician prescribing patterns adapted to the new cultural norm. Bump.

Patients demanded more. Bump, bump.

By 2014, the nation lay in a bed of 19,000 fatal overdoses, plus far more emergency room visits, family crises and drug-fueled crimes.

The question now is how to untangle yesterday’s pain solution from the growing addiction problem.

* * *

Nebraska's opioid numbers do not place it among the worst affected of states, but they show a problem. The exact scope, say state experts, is probably larger than the numbers suggest, because oftentimes public records don't capture the role opioids play, especially in rural areas.

Nebraska took its first hard steps to confront its opiate problem less than a year ago, using funds from two grants. This spring, the Legislature began closing holes through which the state's most desperate addicts augment their opioid supplies.

On Oct. 1, limits on the amount of immediate-acting pain medication allowed to any one Medicaid recipient will affect more than 1,700 Nebraskans with the worst opioid problems. The limit will likely send some of them into a tailspin. In other states, strict limits have pushed some to look for heroin on the streets.

As Dr. John Massey of Nebraska Pain & Spine Center of Lincoln told Mary, there will be pain.

Mary's opioid journey began five years ago, and her story illustrates the progressive nature of addiction. It also ends with hope for something better.

* * *

Mary, a Lincoln-area medical sales professional in her late 40s, had her left hip replaced a decade ago. Hip dysplasia, malformed hips, had caused premature joint wear.

The replacement went perfectly. She took opioid pain meds for four weeks and then returned to her life as a busy working mom.

"It was smooth as silk. I was on and off meds in a month," she said.

Her new hip felt like a part of her but without the arthritic pain.

Five years ago, she had the right hip done. It went badly.

The Stryker metal replacement joint used was one of the thousands that would cause its manufacturer to pay out more than $1.4 billion in legal claims. The disaster also ended an FDA accelerated approval process for replacement hips.

In Mary's case, the artificial hip came apart, leaching metal throughout her body and making her sick. Two years later, a surgeon replaced it.

Repeat replacements are tricky. The surgeon had to split the top of her femur to replace the internal rod, then looped the bone with metal coils. Mary took opioids for two months and then went back to work.

The pain soon returned when she traveled for her job. X-rays revealed a coil had come undone and was poking tissue. Mary had surgery again in April 2014 to remove the coils, no longer necessary because her bone had healed.

During this recovery, she began taking Nucynta, a mid-level opioid. It didn't cause her nightmares or indigestion like hydrocodone can.

"It did help with the pain," said Mary, who talks about Nucynta like it was a close friend who betrayed her.

She also took Cymbalta for chronic pain, depression and anxiety and Gralise for nerve pain.

When things didn't improve, her surgeon sent her to a pain specialist in fall 2014, beginning Mary's real nightmarish descent.

"The Nucynta 50s turned into 75s, to 100s, which turned into extended relief," she said. "It was a gradual bump me up, bump me up.

"He never once educated me of the psychological addiction or physical addiction of this crap."

Her doctor cared about her, she said. "But we never had that talk."

She had radio frequency nerve ablation -- burning nerves that carry pain. The procedures hurt, so she needed more bumps to get through.

"Each time we did that, it got to be more and more. The pain would subside for nearly a week, so I could take less, but it would come back with a vengeance."

The dosage never decreased.

In fall 2015, Mary told her husband they had to figure out what was going on.

"Maybe it's my back," she said.

A CT scan ruled out bone cancer, but an MRI showed bulging lower discs.

"I don't think your back is the problem," Mary's spine specialist said.

She begged him to look again.

He offered to do a discogram -- a diagnostic imaging test that uses needles to fill the discs of vertebrae with contrast fluids to induce pain in affected areas. They would be trying to replicate her typical pain, so she would not be able to take pain medication.

She learned later the test is nicknamed "scream-o-gram, because you scream like crazy."

She went home afterward but ended up in a hospital emergency department over the weekend and got shots for the pain and a two-week prescription for oxycodone to augment the Nucynta.

"For two weeks while I was on it, I felt normal," Mary said. "But as soon as I went off, I was miserable again."

Things were now worse than before the discogram.

Blood tests revealed the discogram had left her with a MRSA infection.

In November 2015, Mary had a multiple lumbar fusion -- a surgeon removed two damaged discs and fused her vertebrae with cadaver bone, plates and screws.

Her high tolerance to pain pills made the recovery feel "like they had ripped the skin off my back."

And she needed a central catheter line in her chest to administer antibiotics to fight the infection. Her husband took time off from work to care for her. Her eldest child took time off from college.

"I went into a depression. I just lay in my room and watched Netflix."

She was on "the highest dose of oxycodone you could imagine. ... Two big pills every three hours."

After exhausting her oxycodone, she took two extended- and eight immediate-relief Nucynta daily. She was depressed, scared and bewildered.

"The hip pain came back with a vengeance," she said.

This time she visited Dr. Massey.

"He's the one who saved my life."

A quick internet search will turn up several former patients who disagree. Ridding patients of pain, it seems, can be rough medicine.

* * *

Decades ago, when the health care industry first began to address pain, it turned to opiates because of their low cost, Massey said.

"Insurance companies love opiates," he said.

They’re cost-effective. They come from easy-to-grow plants and they rely upon technology millennia old. A full bottle of pills costs mere pennies in raw materials.

And the vast majority of people take the medication for a few days or weeks, their pain subsides and they stop. The body endures a mild withdrawal and then recovers.

The problem occurs in that one-fifth of the population prone to addiction. Within that group, Massey said, are three subgroups: people in chronic pain, those seeking thrills and people who are mentally ill.

The problem can be especially difficult, he said, for people who overlap -- for example, a thrill seeker who has chronic pain. Those at the juncture of all three groups -- a depressed thrill seeker in chronic pain -- are probably on Medicaid, the state program for the poor and elderly, because it's unlikely they hold jobs with medical insurance.

Dr. Todd Stull, Nebraska’s chief clinical officer of behavioral health, said roughly half of people with addiction also have a mental health problem.

* * *

Drop a 100-pound box onto your foot, and electrical impulses move up the leg toward a junction, or small gap, at the spinal cord. To cross that gap, electrical impulses trigger a chemical release that flows across the gap and renews the electrical signal in new nerves leading to the brain.

It's here at the gap that opiates work, blocking downstream nerves from reacting to a chemical release.

Recall that sick feeling after your very first cigarette. It took only seconds for nicotine to enter the bloodstream through the lungs, pass through the heart and hit the brain. Once there, it bathed nerves that use nicotine with what would be hundreds of times a normal dose. Your brain didn't work correctly. You felt sick.

Now, recall your 1,000th cigarette. You didn’t feel sick any more. If anything, you felt more normal after the extra nicotine.

That’s because nerves recalibrate to work within their environment.

That chemical bath now becomes necessary for them to work normally.

Over time with opiates, meanwhile, the body finds new ways to get those blocked pain signals to the brain. New nerve endings become enlisted, sometimes outside of the opiate-bathed spine.

The body learns to feel pain -- chronic pain.

Recalibration occurs regardless of the stimulus, Massey said, and it doesn’t just happen with artificial chemicals. It also happens with adrenaline. Those guys in flying suits who keep crashing into mountains, you hear it in their descriptions, he said. Flying toward a mountain at 100 mph, they say, is the only time they feel normal.

Their brains no longer function well with only normal levels of adrenaline.

When it comes to opiates, Massey said, the brain adjusts after about six weeks. Afterward, Massey said, the drug really isn't stopping pain. Now, he said, people crave opioids because of dopamine, the brain's feel-good chemical.

When you laugh, kiss someone, and it feels pleasant, dopamine is rising.

It’s not the base concentration that matters; it’s the rise. Rising dopamine feels good.

A morning cigarette floods the brain with nicotine, and the affected nerves signal others in a process that ends with dopamine rising. Ahhhhhh.

Addiction, Stull said, is more than just heavy drug use.

Long-term exposure to opioids changes not only brain metabolism but also the circuitry.

“Think of it as the brain gets hijacked.”

Willpower doesn’t work, he said.

“It's no longer a voluntary choice.”

Meanwhile, chronic pain affects the entire person, said Massey. It’s fixating, isolating, depressing.

With chronic pain comes loss of work, increased isolation, lost income, family stress. Normal avenues to rising dopamine disappear.

Massey hears it: Doc, I need my opiates. It’s the only way I can feel normal.

As a person becomes more addicted to opiates, Stull said, there is less of a desire to feel euphoria or high and more desire to prevent the very uncomfortable feeling of not having the drugs.

* * *

Pharmaceutical companies, Massey said, developed new solutions to take dopamine out of the picture. OxyContin was one.

With opiates, Massey said, pain relief kicks in at lower doses than does euphoria. Keep the dose steady at the lower level needed only for pain control, and that prevents the euphoria associated with dopamine.

OxyContin uses a plastic delivery system to release opiates in a controlled manner, to keep the dose steady. Abusers, however, learned that by chewing the pills, they could receive a full eight hours worth of opiates over the course of minutes.

* * *

Mary understood Massey's explanations of her pain this way.

"When I take that opiate pill, it sends a message to my brain of no pain," she said. "When the receptor doesn't get that pill, it's pissed off."

As the drugs wore off, she felt heightened pain throughout her body and concentrated pain in her hip.

Massey put her on the antidepressant Pristiq and told her to take only extended-release opiates. That lasted for two days, she said, until she rifled through her husband's drawers to find her drugs.

"Before I knew it, I had two pills in my hand, and they were gone. I didn't tell my husband. I felt ashamed. I was weak. I didn't understand what was going on."

Two days later, she was back to where she had been before -- loopy, isolated, depressed.

"I freaked out and called my husband," she said.

She had gone on the internet and found a private detox center in Arizona. She and her husband paid the $40,000 fee in cash.

Mary described withdrawal as flu times 100, with sweats, insomnia, feelings of being poked by needles, throwing up and hurting everywhere. And that was just to get over the worst of the physical addiction, or phase one.

Six weeks later, she was at Valley Hope in O'Neill to continue her addiction treatment.

"I was spiritually and mentally done," Mary said.

The first weeks there were hell. She couldn't sleep for the pain.

The people around her included college jocks, restaurant owners, an elderly gentleman, people from all walks of life.

"We were all there for the same reason."

Some, she said, didn't have family support, insurance or money. Some had ended up on the wrong side of the law because they wrote their own prescriptions. Some had turned to heroin.

"I could have been that person," said Mary. "I felt like my brain was on fire. There was this warm prickly horrible feeling all over your body."

Slowly, her faith returned. She learned to do things despite the pain.

Even today, she takes Grileas, Celebrex, Cymbalta and an anti-inflammatory.

"I have pain and I'm going to have chronic pain for the rest of my life," she said.

But she takes no drugs for anxiety, and she no longer needs Ambien to sleep.

She can drive again.

"I have my life back. I'm being a good mom."

It's been a few months now. She feels that she's at 80 percent of what she wants to be. She regularly attends Alcoholics Anonymous meetings. She will forever.

"My family has been through hell with me. ... (but) I just kind of smile and I'm happy, because I know where I'm going and I know where I've been."

Information about pain medication was what she needed, Mary said. It was not intuitive to put it all together.

"When you're in pain, you're thinking, 'Fix me, fix me, fix me,' and you're desperate. You trust the doctors."

Reach Johnson at 402-473-2657 or rjohnson@journalstar.com.

Reach Andersen at 402-473-7238 or mandersen@journalstar.com.

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Local government reporter

Riley Johnson reports on local government in Lincoln.

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