Since her doctor took Pam Hoppe off opioid pain medication in June, she has barely been able to get out bed, she said.
“The quality of my life is gone,” said Hoppe, 53, of Madison, who has pain from a joint disorder and a car crash. “If I didn’t have my husband, I’d have to be in a nursing home.”
Hoppe and other chronic pain patients will rally in Madison and around the country Tuesday to bring attention to what they say is neglectful treatment of them by doctors and the government in response to the opioid abuse epidemic.
Guidelines meant to curb opioid abuse and reduce overdose deaths are leading doctors to stop or reduce prescriptions for pain patients who genuinely need the medications, they say.
“We have a right to have our pain reduced,” said Dana Weinberger, who is organizing the Madison rally. “They’re taking our rights away from us, to have pain management, to have function.”
In 2016, state and national guidelines said doctors should consider other drugs or treatments for pain relief and more closely monitor patients on opioids through urine tests and signed treatment agreements.
In Wisconsin, opioid prescriptions dropped 24 percent from the first half of 2016, when 2.4 million prescriptions were dispensed, to the first half of this year, which saw 1.8 million prescriptions.
Deaths from opioid overdoses have continued to rise, however. Last year’s record tally of 883 opioid overdose deaths was up from 827 the previous year and 614 in 2015.
“Definitely the guidelines were needed,” said Dr. Alaa Abd-Elsayed, medical director of UW Health’s pain clinic. “They had good intentions, to reduce the public health problem.”
But some doctors have become overly fearful of prescribing opioids, Abd-Elsayed said. Many haven’t focused enough on finding alternative treatments for patients, such as physical therapy, nerve blocks and anti-seizure drugs, anti-depression drugs and over-the-counter medications.
“We can’t tell patients we’re just weaning down their opioids without giving other medication or doing other interventions — something to treat their pain,” he said.
Rallies in Madison, Appleton and Milwaukee are among nearly 80 scheduled around the country Tuesday by a national group called Don’t Punish Pain.
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Weinberger, who lives near Rice Lake, is heading up the rally outside of the state Capitol. She said pain patients are being lumped in with people who abuse opioids.
“They’re painting everybody with one broad brush,” she said. “We need to separate the chronic pain patients from those who are addicted.”
Weinberger, 51, has taken a prescription opioid for 15 years to treat pain from fibromyalgia, osteoarthritis, a bladder condition, diabetes, Lyme disease and knee surgery.
She reduced her dose by a third last year to prepare for a second knee surgery, wanting to be sure the normal dose provided adequate pain relief afterward. But after she ended up forgoing the surgery, her doctor wouldn’t let her return to the normal dose, she said.
This year, her insurance company wouldn’t cover even the lower dose, which forced her to decrease the amount even more, she said.
Now, she has a hard time vacuuming, washing dishes and grocery shopping. Her husband, who has two jobs involving physical labor, has had to take up those tasks.
“It’s hard on our marriage,” she said. “It affects the whole family dynamic.”
Hoppe said her pain stems from a car crash in 2003 and Ehlers-Danlos syndrome, a connective tissue disorder that causes her joints to dislocate frequently.
Oxycodone was reducing her pain, she said. But in June, a urine test detected too little of the drug in her body, and her doctor cut her off the opioid, she said.
Such test results make doctors suspect patients are giving their drugs to addicts. But Hoppe said she didn’t take her pain medication for one day before the test because she was caring for her mother at her mother’s home and forgot her pills at her home.
“They treat you like an addict,” she said. “It makes you feel like you’re not an equal to other people.”
Without being able to take any opioid pain medication the past three months, Hoppe spends most of her days in bed, she said. She plans to attend the rally, with a walker to help her walk, if she’s feeling well enough.