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Stephanie Deegan has been in pain for years. She’s been diagnosed with ankylosing spondylitis, a rheumatologic condition that causes her back not to move, and there are days she can barely get out of bed.
A few years back, she was trying to manage her pain with standard medication like ibuprofen, but her stomach would get upset and she wasn’t able to take it regularly. Aspirin did the same, and acetaminophen just didn’t cut it.
So, she asked for a few tablets of hydrocodone to help her on really bad days. Back then, it wasn’t a big deal. No one looked at her funny, made her feel bad or suggested she was an addict.
However, recently, with all the news of the opioid crisis, she has spent bad days in severe pain, afraid to ask for relief because of the fear of judgment from her doctors, myself included.
“There are new rules about these medications,” I had explained to her, “so it’s not as easy to just give you pills whenever you want.” It was something I told all of my patients who asked for pain medication on a regular basis.
After all, the Centers for Disease Control had recommended that opioid medication be used more judiciously, releasing a statement to all physicians in August of 2018 about the use of chronic pain medication.
Since then, some patients have found alternatives, prescription and over-the-counter non-narcotic medications that have helped. Others may have found pain management doctors who follow the strict protocols for chronic opioid use. But some patients have been left in pain, with no options offered by their doctors, often out of fear.
The numbers of pain medications prescribed by physicians has declined by approximately 22% from 2013-2017, and continues to drop.
Does that mean patients did not really need these medications, or does it represent a lack of understanding of the experience of pain by those of us trained to do no harm and relieve suffering?
A quick poll of a few of my colleagues resulted in the consensus that it’s much more difficult to prescribe pain medication than it used to be. There are required pain contracts, websites to check regarding all prior use of opioids, urine drug testing — all of which take time, which is in limited quantity these days.
But when her pain is controlled, Stephanie described it as the difference between “night and day.”
“Chronic pain can make life not worth living,” she said, “and people don’t realize the depression that can come over you on those days.” When she’s in pain, she feels like there is no end in sight to her suffering.
Even so, she still felt like asking for pain medication would be met with accusations of abuse, and didn’t feel comfortable telling this to the specialists who were treating her condition. It was affecting her quality of life, her ability to work to support herself and costing her time with friends and family.
As doctors, we have been taught to treat those who are suffering without discrimination and follow the principles of medical necessity.
And now, regulators have begun to clarify that we should not go too far in limiting opioids.
The CDC has realized that its primer on appropriate prescribing may have been misinterpreted by clinicians. In April of 2019 it issued a revised plan of care to help providers adequately assess and treat those in chronic pain.
Even the FDA has warned about the negative consequences of lowering the doses of medications too fast, including uncontrolled pain and withdrawal symptoms.
Patients have been caught in the middle. Some doctors are refusing to care for patients on chronic opioids.
It’s made almost every doctor I have spoken to think twice before prescribing any type of opioid. On one hand, this combined effort has reduced the number of overdoses by almost 5%, but this has left patients like Stephanie searching for relief.
But now, more than ever, our society needs to find alternatives beyond opioids.
Luckily, she has found a non-opioid, Meloxicam, that has helped her pain most of the time. But there may be dark days ahead as her condition progresses and she continues to age.
“If we can plan a mission to Mars, why can’t we find better alternatives for pain relief than addictive medications that can kill you?” she asked. Stephanie wondered why more money isn’t being spent to discover such medications.
The billion-dollar settlements that the pharmaceutical industry has agreed to are not guaranteed to go to future research into pain treatments. Just as the doctors have shied away from treating pain, so drug companies may be wary of any responsibility for newer drugs that have even the slightest potential harm.
No one should be left to suffer because of the fear of asking for help. But now, more than ever, our society needs to find alternatives beyond opioids. It’s time to partner with the pharmaceutical industry and use its expertise to research and develop new compounds to treat pain.
Many factors led to the opioid crisis. Likewise, the solution should rely on multiple efforts.
For Stephanie, the ability to get relief without feeling she’s being treated as a criminal has helped to lower her stress as her condition progresses. We agreed that she should have a small quantity on hand in case she wakes up unable to get out of bed. After all, she would not be able to come to the doctor’s office if she could barely get out of bed and she needed a back-up plan for when her condition flares up again.
In a valiant attempt to do no harm, clinicians may be making things worse for their patients who truly need pain relief and are now afraid to ask for it.
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