They recommend first trying Tylenol or drugs such as ibuprofen or naproxen, which are in a class called non-steroidal anti-inflammatory drugs or NSAIDs. They also recommend trying low-tech options such as ice, physical therapy and massage. And, the CDC says, patients may have to change their expectations about living with pain.
But the CDC and FDA do not regulate physicians. States do.
At least 28 states have some limits on opioid prescriptions, according to the National Conference of State Legislatures. Seventeen limit prescriptions to three to 14 days.
Others have prescription drug monitoring programs to keep watch for providers who might be writing prescriptions too freely.
The pain patients who traveled from across the country to testify to the FDA say they are feeling the effects.
Flores, who said she was diagnosed with her painful condition two years ago, said she can no longer find a doctor to prescribe her opioids.
“I have yet to have a doctor accept me as a patient,” Flores told NBC News.
“No doctors will fight. They just don’t want to get into trouble. They have forgotten the people these drugs were made for.”
Flores said she worried she was failing as a mother, her teenaged son unwilling to put her down as an emergency contact. “He knows I often don’t answer the phone because I am in bed,” she said.
“When can I have medicine so I can just be comfortable in my body?” she asked.
It’s clear who they blame for their reduced ability to get opioids.
“To the FDA — we are begging you. Correct the CDC’s egregious mistakes,” said Rose Bigham of Seattle, who spoke on behalf of the Alliance for the Treatment of Intractable Pain.
“The CDC recommendations have done irreparable harm to people in pain.”
Fears of being denied pain relief
More than 90 percent of the patients at the FDA meeting and watching online said they had used NSAIDs and more than 80 percent said they had used opioids to control their pain. And 77 percent said they had used gabapentin (Neurontin) or pregabalin (Lyrica), both anticonvulsant drugs also approved to treat pain.
As for non-prescription treatments, 68 percent said they had used dietary supplements or herbal remedies to treat pain, 47 percent said they had tried medical marijuana or other cannabis-based products, 68 percent had tried acupuncture, massage or other complementary therapy and 47 percent had tried counseling or other psychological treatment.
“None of them are covered by insurance,” Bigham noted, to applause and loud cheers.
Bigham said she has ankylosing spondylitis, a form of arthritis affecting the spine.
She said she has tried NSAIDs, muscle relaxants, antidepressants, injectable drugs, cortisone and an electric current therapy called transcutaneous electrical nerve stimulation (TENS or TNS). “I remain on opioids to this day,” she said.
“My new worst nightmare is being admitted to the hospital, being in agony, and being denied pain relief,” Bigham said to more applause.
Charlotte Diggs of Atlanta said it’s not easy to get alternatives to opioids, either. Her physician was not forthcoming about possibilities when he was treating her for complex regional pain syndrome. “He didn’t offer it,” she said. “I had to hear about it and then ask him,” Diggs told NBC News.