VALPARAISO — Chronic pain patients protested Tuesday over government guidelines they say limit their ability to get their needed medications.
The Don't Punish Pain Rally, held in front of the Porter County government building, was meant to spotlight how legitimate pain patients have become "collateral damage" — as one attendee put it — of the opioid crisis because of pressure on doctors to prescribe the medications less.
"I don't want to be an unintentional consequence of the opioid epidemic," said Dawn Anderson, a double amputee from Portage who organized the event. She said that when her doctor switched her to a lower-strength, shorter-acting form of morphine, it destroyed her quality of life, leaving her mostly confined to a wheelchair.
"We need the government out of our doctor's office," she said.
About 15 people attended the Valparaiso protest, with a steady stream of passers-by stopping for information. Signs included such sayings as "Patients not addicts," "Pain is not a crime," and "CDC and FDA are killing pain patients." One woman had a list of names of people she said couldn't attend the rally because they were in so much pain.
In the wake of what it labeled an epidemic of opioid overdose deaths, the Centers for Disease Control and Prevention in 2014 and again in 2016 released guidelines for prescribing opioids for chronic pain. The recommendations included limiting the dosage of opioids and questioned the efficacy of even using opioid therapy for long-term chronic use.
"We are asking to CDC to remove the guidelines themselves or we can ask the politicians to do it by law," Anderson said, asserting that some people have killed themselves after their painkiller dosages were lowered. "How many more chronic pain patients and veterans do we have to lose before we remove these CDC guidelines?"
Lynda Rollins, 57, of Valparaiso, said she now needs medication because of failed attempts by doctors to relieve her pain in the past, by putting in devices that didn't work.
"People that have chronic pain weren't asking for medications in the beginning. They were asking to fix it," she said.
Marialyce Akers, of Portage, said she's now largely confined with a wheelchair because of her pain issues. She said she had an accident when she was young and never fully recovered. Her primary care doctor recently took her off hydrocodone and morphine, she said, and pain clinics wouldn't prescribe as high a dose as she was on before.
"I don't have quality of life," the 53-year-old said. "I can't even get into my kitchen."
She said she sometimes skips dinner because of that, and has urinated herself because she couldn't make it to the bathroom.
Becky Maranto, 46, of Porter, said the first thing her doctor did after she went to be seen for pain issues was prescribe opioid painkillers. She said she has an autoimmune disease, scoliosis and migraines.
"I don't want to pop pills," she said.
She tried other pain relief methods — physical therapy, acupuncture, chiropractic — but nothing worked as well as the pills, which she now has trouble getting, she said.
"It's not that I want it, but in order to live a life worth living that's what I have to do," she said.
She started a support group in Chesterton called NWI Silent Sufferers (it meets at 7 p.m. the second Tuesday of every month at Thomas library, 200 W. Indiana Ave.)
Kimberly Jorgensen, 51, of Portage, said she has fibromyalgia and bulging discs, among other conditions. She said a local pain doctor pushed her to take opioids: fentanyl patches, Dilaudid.
"I told him I didn't want them anymore," she said. "I seized for three days coming off that."
But she said it's now gone to the other extreme, where if she needs a small amount of opioids to occasionally relieve her pain, doctors put hurdles in front of her: having her do physical therapy, taking an MRI.
Anderson said she hasn't heard back from many lawmakers on the issue, and hasn't seen any legislative action to address it. Akers said an Indiana legislator told her she should use marijuana (which is illegal in Indiana for both medicinal and recreational purposes).
"Let people know we are here suffering," Anderson said, in her wheelchair, her legs amputated below the knees. "We need help now."