Chronic pain sufferers feel stigma amid opioid crackdown – March 26, 2017 | by Jessica Bliss
I’m heartened to see that this reporter clearly understands the misery of chronic pain.
Bridgette Rewick has experienced pain — sometimes agonizing — for all of her adult life.
At 56 years old, the mom from Brentwood in Middle Tennessee is on disability. She doesn’t work. She can’t kneel, wear high-heeled shoes because of her constant discomfort. Pain swells through her body, moving from her fingers and wrists to her shoulders, hips and ever-swollen ankles.
She walks with a cane. It’s hard for her to make dinner because of the time spent on her feet. She often declines social engagements, worried about the strain on her body from being out.
Those last acknowledgments bring her near tears.
All the while, her bone tissue is dying faster than her body can repair it. She has avascular necrosis — a result of the long-term, high dose of steroids used to treat the systemic lupus doctors diagnosed when she was just 17.
To make daily life with chronic pain more tolerable, she takes doctor-prescribed opioids.
“I am almost afraid to go to the doctor sometimes to say I have pain,” Rewick says. “Because I don’t want be seen as a pill seeker.”
She wants to be judged individually as a patient.
It’s shocking how this basic role of medical care has changed. Patients are judged and treated as though they were statistical averages, not individuals.
But much has changed in the nearly 40 years since her original diagnosis.
In Tennessee, standards issued by the state Department of Health set limits on the daily doses of opioids doctors may prescribe, spell out protocols for giving the drugs to women of child-bearing age and establish new certification requirements for pain medication specialists.
Legislation limits prescriptions for certain drugs, which include a range of opioid medications, to 30 days. Law also requires physicians to perform urine drug tests if they prescribe these medications beyond 30 days, in addition to checking a prescription database to be certain the patient is not getting drugs elsewhere and entering the prescription into the database.
Chronic pain patients say more and more doctors and clinics operate with the presumption that those seeking prescriptions for pain may be drug seekers. Some doctors have chosen to stop prescribing opioids completely.
Most chronic pain patients agree there are significant opioid abuse issues that must be addressed. But their personal experiences show a different side to that story, and many feel that, in the push to regulate opioid use, chronic pain patients are not being consulted — or even considered.
All they have is the desire to find relief, however fleeting, from the worst of their pain and to live “normally,” as best they can.
In the midst of an opioid epidemic, chronic pain also appears to be a significant public health issue.
Defined as pain lasting longer than 90 days, chronic pain can result from a disease or injury, medical treatment like surgery, inflammation or a problem in the nervous system. Or the cause may be unknown.
The most common conditions include lower back pain or osteoarthritis, along with rheumatoid arthritis, migraine, carpal tunnel syndrome and fibromyalgia.
Whatever the cause, chronic pain often impacts quality of life and productivity, making it difficult to move around. It can disturb sleep and cause anxiety or depression. It is the most common cause of long-term disability.
Meanwhile, chronic pain patients decry some of the effects of new guidelines, saying prescription decisions are best made by medical professionals based on the individual needs of each patient, not by regulation.
This seems so obvious in obvious ways that it’s clearly dangerous to ignore it. Yet, regulations ignore individual differences completely – they are designed to be the “same for everybody”.
This is NOT the way real medicine has ever been or should ever be practiced.
When Rewick, whose first major surgery was a double hip replacement at age 22, needs to travel to Florida to care for her aging mother, she has to do so around her prescription schedule, because only her Nashville doctor can write her a refill. She doesn’t want to run out of pills while she’s gone. The pain, she says, will swallow her.
She is lucky to have her husband’s private health insurance to help. She has, on occasion, tried alternative pain relief options like acupuncture or physical therapy. But physical therapy and other treatments are limited by insurance companies, usually paying for only a certain amount of treatments within a year. And multiple $50 copays per week can add up, particularly for those unable to work and on disability.
So, sometimes she spends several days in bed, dealing with what she describes as “bone cancer pain” without the cancer. She no longer has a job, feeling forced by the pain to leave her part-time position balancing statements at a law firm five years ago.
“In bed” is where many pain patients will land if their pain-relieving medications are stopped.
Which brings her back to this question:
Which issue is most important — reducing overdoses and addiction or meeting the needs of millions of chronic pain patients? She is not alone in her thoughts.
Part of the issue is that pain is difficult to measure. Thermometers and blood pressure cuffs don’t do the trick, so for the past two decades physicians have focused on pain score, calling pain “the fifth vital sign.”
In the hospital, that makes sense, says Edwards, but when you ask a chronic pain patient how much it hurts and she says 6 out of 10, then a year later, she comes back and says it’s the same, “What do you do with that?” Edwards asks.
Whether a patient is being authentic or not can be extremely objective. No one can be certain just looking at a patient that his or her claim of pain is sincere. So you have to tune out the distractions and really pay attention.
For Dr. John Guenst, the relationship remains most important.
When he started practicing more than 20 years ago, people asked doctors to call in hydrocodone prescriptions all the time. And many doctors did it.
Now, he said, “It’s pretty complicated.”
“You have to listen to their story, you have to examine them, you have to start from scratch without your bias and turn over every stone that is reasonable,” he said. “You are giving patients the benefit of the doubt.”
Although the CDC guidelines are voluntary and meant for primary care physicians, many doctors around the country have adopted them and are either weaning their patients off opioids or choosing not to prescribe them at all.
A 53-year-old Nashvillian, Marsh’s pain began at the age of 10 with a childhood bike wreck that flung her over her handlebars going downhill. When her mother took her to the doctor for the pain, one said: “Don’t encourage her, it will make her a hysterical female.” Another said: “You’re a woman, you’re going to hurt. Get used to it.”
Marsh did, for a long time. But nine years ago, when she was diagnosed with fibromyalgia, she started using opioids. She describes her pain as the most horrible case of the flu, a continual all-over body ache that, at its worst, once lasted for 16 weeks.
She wears a doctor-prescribed fentanyl patch, which is part of a medical care regime that includes taking seven pills in the morning and 10 at night — not opioids.
They address all sorts of issues, including a congenital heart defect, asthma and arthritis. She notes she is one of the fortunate ones with a great team of doctors.
She feels for those people who have lost loved ones to opioids. In fact, she’s seen the other side. One of her family members was married to an addict, and addiction destroyed that family.
But for every life lost to overdose, she also sees the faces of those who commit suicide from chronic pain.
Most often suicides are connected to depression, mental illness, financial problems or drug and alcohol abuse. Untreated chronic pain is not often mentioned, but more studies are being done on the connection.
“There are a lot of victims when it comes to addiction,” Marsh says. “I know there’s an overdose epidemic. We see those faces.
“But then I see these other faces —the ones who commit suicide because they can’t handle the pain. Those faces mean just as much to me.”