Fern (center) and her husband, David, at Beulah Beach in Vermilion, Ohio, with some of their closest friends—their pastor and some of the members of her church pain group.
A Feather, A Trial, An Uncharted Disease: Seeking Reasons to Hope
By Emil DeAndreis
One winter morning in 2016, Fern Kolarik woke up beside her husband of 22 years. Hanging throughout the house were photos of their life together: Parasailing and tubing adventures. Their wedding in the Bahamas, where they dove 40 feet beneath the sea’s surface in scuba gear to get hitched underwater.
For a time, the Cleveland couple had tried to make an annual trip to the Bahamas for an anniversary dive—but Fern hadn’t been able to do that in years.
She went about that morning in a delirium of sleeplessness and pain, her only clear thought that she wanted her life to end. She’d known it for years—enough to voice it to close family and friends. They told her she was selfish.
She may have seen her plans through that day, were it not for the appearance of something incredible outside her window. The winter clouds draped the sky in a soft, fluffy sheet—breaking in just one spot, in the unmistakable shape of a feather.
Fern called her husband, David, over to the window. They both marveled, taking photos to preserve the moment and the message: This life is beautiful, and God wants you here.
AN UNRELENTING DISEASE
Complex regional pain syndrome (CRPS) is accurately—if simply—named, says Fern, 66. There’s no cure for the condition, formerly known as reflex sympathetic dystrophy (RSD), and no clear reason why it develops after certain injuries or procedures in some people, but not others.
In her 20s, Fern needed a knee replacement. Amidst a plethora of delays—some driven by insurance denials—and complications, she ended up having two dozen knee surgeries. She developed pervasive nerve damage and pain in her leg that went undiagnosed for over a decade before a doctor finally identified it as CRPS. The pain has since spread to both legs, and her left hand and wrist.
“It’s an intense burning and stabbing,” she describes. “For a lot of patients, the pain is not solved. It gets worse.”
Knowing firsthand how the disease can progress—and with CDC guidelines now limiting the prescribing of opioids to help manage severe chronic pain—Fern has grown to understand the nickname often used for the condition: the “Suicide Disease.”
AN EXPERIMENT WORTH TRYING
For a long time, Fern did not come across much information or research about her disease. But soon after she saw the feather in the sky, she learned about an experimental trial being held nearby, evaluating the safety and effectiveness of neridronic acid in treating CRPS. The medication, used for four decades in other countries to treat various diseases, had shown efficacy in reducing CRPS pain in a previous trial.
Expedited by the FDA as a “breakthrough therapy,” the trial offered all study participants the experimental therapeutic via IV, with no placebo group. Fern knew this meant limited data on side effects or long-term impacts, but that didn’t deter her—the possibility of relief outweighed the potential risks.
She was told the treatment had been more effective in individuals who’d recently been diagnosed with CRPS than those, like her, who’d been living with it for some time—but that didn’t deter her, either.
Because in the middle of the trial’s 20-page informed consent paperwork, she read this: The results of this trial may lead to a treatment for patients suffering from CRPS. You may experience relief of pain associated with CRPS, a decrease in other symptoms of CRPS, and an improvement of your general well-being after the treatment.
Treatment. Relief. Improvement.
Fern signed on the dotted line.
“They were such a caring, phenomenal place,” she says of her experience at North Star Medical Research during the trial.
The trial doctor, Mark J. Woyshville, MD, stayed in regular contact and made a point to educate technicians about participants’ acute sensitivity to touch, which “could send electrical shocks of pain, like bee stings,” Fern explains.
And for the first time in over a decade, she experienced pain relief. It was nearly impossible to believe: Her leg pain was less acute. She regained functionality and mobility she hadn’t experienced in years.
“I was telling my friends and family: ‘It works, it works! And not just for the newbies—it works for me!’” she recalls.
A DISCOURAGING SETBACK
She saw the research as a continuation of the feather’s symbol of hope and transformation—but all clouds eventually fade.
The trial was discontinued.
“I was so devastated when the trial didn’t pass in the U.S.,” Fern says.
Findings on the medication’s efficacy were not strong enough to continue this particular trial, despite earlier success. Today, while neridronic acid is approved to treat CRPS in other countries, it is not in the United States.
Fern’s disappointment was keen: That she wasn’t informed about the trial’s results. That the medication offering her pain relief and a fragile hope is no longer available to her. And that even when the individuals conducting research are compassionate and knowledgeable, the bureaucratic maze of medication development sometimes leaves participants feeling stuck in limbo and disregarded.
But despite that disappointment, she still urges others living with pain who are considering participating in a clinical trial to keep an open mind and a positive attitude. While pain relief isn’t guaranteed in a trial, it’s often still worth trying, she says, especially if other treatments haven’t helped.
“Remember the reason you are doing the study, whether it’s for you or others,” she says.
And for the pain researchers working with those individuals? Consider the full person, she urges.
“Understand that pain is real,” she says. “It affects all factors of a person’s life moving forward—not just physically but emotionally. Most importantly, think about how our remaining quality of life will be.”
THE POWER OF SUPPORT
Fern has given CRPS a new moniker: “Can’t Really Participate Socially.”
“Over time, because this disease is invisible, people start to question you,” she explains. “They think that if doctors can’t find what’s wrong, then there’s nothing wrong with you.”
Her pain has weakened relationships and led to isolation. Today, one of her greatest sources of validation and connection is a chronic pain support group that was formed by Pastor Dennis Barta at Grace Church, where she attends. Of the group’s 12 members, four live with CRPS—which Fern says makes her wonder how rare the disease truly is.
Her husband, David, has always been there for her, too. “He bears this burden with me,” she reveals. “He has watched my decline over the years, and it affected him as well.”
Distressed by the ways her condition impacted her husband’s mental health, Fern went so far as to offer a divorce—but David refused.
She describes him as her soulmate—and his support gives her hope.
“I still get those giving-up thoughts, especially at night,” she admits, “but far less often.”
HOLDING ON TO HOPE
The first Monday of November is called “Color the World Orange Day”—a worldwide movement spreading awareness of CRPS. Thanks to Fern and David’s work with the city of Cleveland, Terminal Tower and the Rock & Roll Hall of Fame are illuminated in orange every year.
Today, Fern receives regular ketamine infusions that provide temporary pain relief. Those treatments, coordinated by Pavan Tankha, DO, at Cleveland Clinic, are the only thing that offers her a sense of normalcy, she says.
She still sees feathers on a regular basis—suspended in spiderwebs, or in the patterns of paint spattered on the basement floor.
She dreams of the day that research leads to answers and better relief for CRPS. But in the meantime, Fern keeps her eyes peeled for those small signs to keep fighting and not lose hope.