The platter of pill bottles, supplements and other-the-counter medication sits as a testament to life with chronic pain.
One of the drugs helps Edie Caito stem nausea that can come on when the pain is at its worst. A bottle of muscle relaxers is available for spasms and impossibly stiff muscles in her back and shoulders. Anti-anxiety medication helps calm her mind when the pressure of constant aches piles up.
Natural supplements help boost her own body’s ability to deal with pain.
None is more vital than a small orange bottle, though. Inside is Caito’s precious supply of hydrocodone, a opioid prescription painkiller.
“This is the magic pill. This is how I function,” Caito said.
Caito is one of 100 million U.S. residents who suffer from fibromyalgia, a chronic pain condition causing body aches and worse that never completely goes away. After years of trying combinations of medication, some of which caused allergic reactions and suicidal thoughts, she and her physician had found that small dosages of painkillers helped her function on a day-to-day basis.
Changes in state law dictating how much pain medication can be prescribed has stripped some of that effectiveness.
While she understands the importance of strict regulation of these kinds of drugs, Caito said patients such as her are victims of overreaching legislation that only hurts people suffering from chronic pain.
“We’re not addicts. We’re patients. There’s a stigma attached to that, if you take it, you’ll need more and more,” she said. “I haven’t needed more, but they took my regular dose away from me.”
The prescription and sales of opioid-based prescription drugs, such as codeine, Vicodin and OxyContin, have quadrupled since 1999, according to the Centers for Disease Control.
The medications have their benefits, according to Dr. Rhonda Sharp, president of the Indiana State Medical Association.
“Every medication has side effects, good and bad. People need to take that into consideration, since sometimes we only think about the bad things,” she said.
At the same time, the drugs come with a myriad of negatives. Opioids slow down your thinking and induce sleepiness. Since 2000, prescription drugs have been increasingly involved in fatalities in Indiana, Sharp said.
More than 40 people die each day from prescription opioid overdoses, stemming from overuse and overprescription, said Dr. Tom Frieden, director of the Centers for Disease Control.
“We must act now. Overprescribing opioids largely for chronic pain is a key driver of America’s drugoverdose epidemic,” Frieden said.
All over the U.S., medical officials have been trying to walk the line between using opioids to benefit patients and overprescribing. The Centers for Disease Control released new guidelines in March for physicians on how to best use opioids to handle chronic pain.
Foremost in their guidelines is sticking to non-opioid treatments for chronic pain sufferers, according to Debra Houry, director of the National Center for Injury Prevention and Control.
“Doctors want to help patients in pain and are worried about opioid misuse and addiction,” she said. “This guideline will help equip them with the knowledge and guidance needed to talk with their patients about how to manage pain the safest, most effective manner.”
At the state level, control of opioid prescription has been written into law. Legislation passed in Indiana in 2013 restricts the amount of “morphine equivalent” drugs that can be prescribed. Patients could not receive more than 15 milligrams of the drugs per day. They could only be prescribed 60 pills per month.
“It takes a well-rounded approach. We’re going to do our patients a disservice if we say it’s not going to be in our repertoire at all. But maybe, at times it’s been too easy to do that,” Sharp said. “There are benefits to prescribing these medications, we just have to do it very wisely.”
But for patients such as Caito, the restrictions are too steep and don’t allow any flexibility for physicians.
The 50-year-old suffers from fibromyalgia, a chronic condition that causes widespread pain and tenderness throughout the body. Her rotator cuffs are sometimes so stiff and tender it is difficult to lift her arms over her head.
She calls the shooting, stabbing tightness in her chest “lightning bolts” pain that seems to materialize out of nothing, incapacitating her then disappearing again.
Often, she suffers from insomnia. The less sleep she gets, the more pronounced the pain throughout her body becomes.
“It’s kind of a vicious circle,” she said.
Caito had experienced some aching and soreness throughout her life. But when she reached her early 30s, that pain was becoming more pronounced, she said.
In 2009, her physician diagnosed her with fibromyalgia in 2009.
Caito tried to avoid narcotics to deal with the pain for as long as she could. For two years, she cycled through a dizzying number of medication and supplements to deal with the worsening suffering.
Drugs such as Lyrica and Gabapentin caused such severe allergic reactions that they affected her brain chemistry.
Finally, Dr. Xienfeng Zhu, her southside-based doctor, asked her to stop torturing herself and use medicine that was developed exactly for her condition.
“It’s not like he was pushing an opiate on me. He wanted me to be able to control my pain. He always told me not to wait until it was so bad I couldn’t stand it,” she said.
Since then, she had been receiving 10 milligrams of hydrocodone, a generic version of Vicodin. But the regulations passed in Indiana in 2013 has greatly reduced the amount Caito can be prescribed. Now, each pill is 7.5 milligrams, and she can only take two pills daily.
“Am I going to use a pill to clean the house today? I get two pills per day that’s it. So I have to prioritize what I’m going to use it for,” she said.
Even with medication, Caito often is in too much pain to do much of anything. After a busy day of watching her grandchildren a few weeks prior, she spent the next two days in bed, too sore to will herself up even to walk around the house.
“This is my new normal,” she said. “I have a pain condition that will never go away. Some days, you just want to give up. Other times, you think about what you can do to fight.”
That’s a marked changed from how Caito had lived much of her life. She loves the outdoors and used to go camping and hiking all of the time.
Now, she knows that even an easy day of hiking will put her in bed for days at a time.
Caito had been the driving force behind the creation of Independence Park, the Center Grove-area part that became the state’s first fully handicapped-accessible playground when it was built in 2000.
She had rallied parents, parks officials and other supporters to design the park, apply for grants and raise more than $1.1 million from donors.
Approaching a project like that now is unthinkable, Caito said.
“It’s very hard to go from an active member of the community to being essentially bedridden,” she said.
Caito’s daughter, 18-year-old Michaela, also has fibromyalgia. She was diagnosed at the end of 2015, after suffering the telltale inflammation of her rotator cuffs.
Regulations restrict younger patients such as Michaela from getting pain medication. For her diagnosis, the most powerful drug her orthopedist recommended is over-the-counter ibuprofen.
A senior at Center Grove High School, Michaela often can’t sleep. Dizziness is a constant affliction.
“Who needs a roller coaster when you can just stand up and feel the same thing?” Michaela Caito said.
Caito uses hot Epsom salt baths and heating pads to mitigate her daughter’s pain. But often it supercedes any remedy they have available.
“It’s too much sometimes,” Michaela Caito said.
Caito has tried to be an advocate for chronic pain sufferers in Indiana. She started a Facebook group to provide information, resources and a community of understanding for patients.
Many people just like herself are struggling in the wake of the new regulations.
“There are thousands of people just here in Indiana who can’t even get out bed in the morning, because their medications have been taken away,” Caito said.
Caito understands the dangers that powerful drugs such as hydrocodone present. It would be easy for her to expand her use from simply using the medication to treat her pain, chasing the euphoria these pills can bring instead.
But she also doesn’t think the regulations passed by the Indiana legislature were carefully considered.
“I don’t feel like the government should be able to tell my doctor how to treat me,” Caito said. “I understand that there were good intentions when that law was written. But it has taken away the physician’s power to treat their patients, without any safety net for patients like myself.”
