From a wheelchair in her Louisa County home, Amy Withrow is encouraging other people who suffer with chronic pain to let their voices be heard.
In recent years, patients such as Withrow, a 35-year-old mother of three with an assortment of auto-immune disorders, have had trouble getting their medicine as a result of the ongoing opioid epidemic.
In an effort to reduce the the number of painkillers used illegally, some doctors have stopped prescribing narcotics altogether—and their actions have left millions of legitimate pain sufferers "homeless" in the medical community, Withrow said.
That's why the Louisa County woman has organized a number of protests in Richmond to get the word out about the other side of the opioid epidemic. She's planning the fourth "Don't Punish Pain Rally" Wednesday on the steps of the Virginia State Capitol in Richmond, from 11:30 a.m. to 1:30 p.m.
"We need to bring attention to ourselves," Withrow said. "That's why we continue to rally so frequently. We're suffering, but we're not going to sit here quietly and suffer in silence."
Withrow has fibromyalgia (widespread muscle pain and tenderness), Crohn's disease (chronic inflammation of the digestive tract) and hypoparathyroidism (decreased secretion of a hormone related to the thyroid gland). She also recently was diagnosed with Ehlers–Danlos Syndrome, a genetic disorder that affects the protein that holds skin and organs together. She said she never knows when extreme pain will hit, making her feel like she's being squeezed to death.
Withrow wasn't always in a wheelchair, though. She blames that development on the reaction to the opioid epidemic.
More than 70,200 Americans died in 2017 alone from illicit drugs or prescribed opioids, and as deaths started to climb, efforts were made to reduce the number of painkillers being prescribed.
A few years ago, Withrow's primary care physician in Richmond suddenly announced that the office no longer would issue the narcotic medicine that helped Withrow function.
Her painkillers were cut off abruptly, and she searched for another doctor. One physician at a pain management clinic suggested spine surgery, even though the doctor also admitted it wouldn't really help her. Withrow finally found a gastroenterologist who prescribed medicine to combat the extreme pain she has in her abdomen when she eats.
Withrow says she's become so weak and fatigued as a result of her various conditions that about a month ago, she resorted to being in a wheelchair all the time. She had kept one in the vehicle for use when she was out and about, feeling weakened or had to cover long distances.
"I can't do anything anymore, I'm just so exhausted," she said, adding she's too weak to pick up her younger children, who are 2 and 4. She also has a 13-year-old son with autism.
But somehow, Withrow summons the energy to organize protests and rallies because she believes the events, held across the nation, are making a difference. She points to a statement issued last month by the Centers for Disease Control and Prevention as proof.
It stated that some physicians went overboard in applying the guidelines regarding opioids that the CDC issued in 2016.
The CDC did not recommend that doctors stop the use of opioids already prescribed to people with chronic pain conditions or to apply the guidelines to those being treated for cancer, with acute sickle cell crises or with post-surgical pain, according to the CDC website.
Likewise, the "guideline does not support abrupt tapering or sudden discontinuation of opioids," the CDC stated. "These practices can result in severe opioid withdrawal symptoms including pain and psychological distress, and some patients might seek other sources of opioids."
Chronic pain sufferers have argued for years that they weren't abusing FDA-approved prescriptions, but instead were using them as prescribed. Yet they were the ones being treated as criminals, argued Becky, a Spotsylvania County patient featured in an August story in The Free Lance–Star.
When she moved from North Carolina to the Fredericksburg area in 2017, she brought detailed medical records about her chronic pain and contacted at least eight doctors' offices in the area. Often, the receptionist cut her off before she could even describe her conditions, saying: "We don't prescribe opiates."
Becky reached out to the newspaper after a recent story about drug overdoses in the Fredericksburg region, which rose 7 percent between 2017 and 2018, even as state deaths dropped 4 percent in the same time frame. At least 110 people in Fredericksburg and the counties of Caroline, Culpeper, King George, Orange, Spotsylvania, Stafford and Westmoreland died in 2018, according to the Virginia Department of Health report.
The biggest driver in the increase was fentanyl, an illicit substance that caused more than half the fatalities. When a bad batch hits the street, the deaths don't scare users away, according to Spotsylvania County authorities. It makes them want the drug that much more, officers said.
"It really shows the length to which people will go to chase a high," Becky wrote in an email. "The chronic pain community is so far afield from the addiction community that it really is impossible to conflate the two."
That's another reason Withrow wants to continue getting the word out about her rallies—to educate people on the difference between pill seekers and pain sufferers.
"We want to help the public understand the difference between legally prescribed prescription medication and illegal, illicit, street drugs," she said.
More information about the rally is available online or on Facebook by searching for "Virginia Don't Punish Pain Rally."