Caylee Cresta at home in North Reading, Mass. (Photo: Paula Bronstein for Yahoo News)
Caylee Cresta, 27, a wife and mother of a young son, is a victim of the opioid epidemic, although not in the way you might think. She doesn’t have needle tracks on her arms; she gets her dosages legally and has never overdosed. But she has a problem shared by many Americans who depend on painkillers to get through life: the well-intentioned effort to discourage doctors from writing unnecessary prescriptions has made opioids harder to get for people who actually need them.
Sometimes she runs out altogether.
“I hide on my really bad days,” she says — the times when she can’t get a prescription filled — “and on my better days, which are always days that I have my full dose of opioids in me, those are the days when people see me.”
Cresta has a rare condition called stiff person syndrome (SPS), which affects the brain and spinal cord and causes painful spasms that can be strong enough to break her bones. Sudden stimuli like stubbing a toe or a hug from behind can trigger a spasm that lasts for hours. While the disease is most common in people between the ages of 30 and 60, disabling them more and more over time, Cresta was 18 when she had her first spasm. It took a couple of years and dozens of doctors before she knew what was happening to her body.
“I was a senior in high school,” recalled Cresta. “I was sitting at lunch one day and I just got this terrible throbbing pain in my jaw. The first place I thought of was my dentist. Then they referred me to the orthopedic surgeon and when I got there, the nurses looked at my mouth. As she’s looking around, my jaw slams shut. And it stayed like that for 18 days … until somebody put me under anesthesia and broke it out of place.”
Cresta spent a year and a half seeing 30 different kinds of specialists before she was diagnosed with SPS. By this time, the muscle spasms had progressed down her body and in one instance, she could hear the bones in her hands breaking. Her doctor, a neurologist who specializes in rare diseases, offered opioids as a treatment to slow down her nervous system and help relieve the pain prompting the spasms, but Cresta refused to take them.
“I had grown up watching a fair amount of addiction” in her family, said Cresta. “I have seen what addiction could do.”
Eventually, after being confined to a wheelchair for months and in the emergency room with a spasm, Cresta acceded to a doctor’s insistence on giving her an intravenous opioid. After it was administered, she felt near instant relief.
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