PORT CHARLOTTE – At first glance, it’s difficult to know exactly what Amanda Jakubowski is dealing with. The 36-year-old Port Charlotte woman moves slowly and deliberately, her small and frail frame accentuated by brightly colored short hair and dark glasses.

Without understanding her illness, you might jump to conclusions. Cancer? Drug addiction? Eating disorder? She said many people have wondered exactly that.

When she speaks, her soft voice is full of conviction.  

She is in pain and feels helpless to stop it. 

“It hurts because you’re begging for help and you can’t get it,” she said.

Amanda said she’s suffering in silence, as a nationwide pain pill crackdown is leaving patients like herself struggling to find options for relief.

For years, headlines have chronicled the rise and fallout of Florida’s prescription painkiller addiction.

But among the addiction rates, law enforcement crackdowns, and the subsequent rise of heroin use, there is another consequence that hasn’t gotten as much attention. Chronic pain sufferers, who say they’re still suffering and can’t get help, feel as though they’re slipping through the cracks.

Mark and Amanda Jakubowski at their wedding in 2005.

A devastating diagnosis

Amanda and Mark Jakubowski were just like any couple, both enjoying careers, their lives in Atlanta, and their marriage.

Everything changed on October 11th, 2010, when Amanda came home from work sick.

“Anytime she put anything in her mouth, within five minutes she was violently throwing up,” Mark explained.

Days of what she thought was a stomach flu turned into weeks, then months.

A never ending list of doctors offices and specialists brought up possible diagnoses of everything from Irritable Bowel Syndrome to gastric cancer, before finally revealing a devastating diagnosis: gastroparesis.

It’s a rare disease in which the stomach becomes paralyzed and unable to digest food.

In some, gastroparesis is brought on by complications from diabetes, but for many patients, doctors don’t know exactly what causes it. In either case, there is no cure.

It affects twice as many women as men, and it frequently happens among young adults, even children.

Amanda sees Dr. Raul Rosenthal, the director of Cleveland Clinic Florida’s Bariatric and Metabolic Institute, and a specialist on gastroparesis. He said the disease affects less than one percent of the population, but it will have a huge and lasting impact on a patient’s quality of life.

It’s been more than six years since Amanda has been able to eat a full meal. She has survived with the help of various feeding tubes, and small meals consisting of anything from a few goldfish to some ginger ale.

Rosenthal said because the disease is so rare, many other doctors don’t know just how devastating it can be.

“I think the number one reason why this disease is silent or invisible is the lack of knowledge and awareness,” he said.

Amanda thinks that lack of awareness explains why it took months to first be diagnosed, and why she still faces challenges in the medical community today.

Amanda Jakubowski receiving treatment in February of 2016.

The pain of pain management

As Amanda has struggled to fight this disease, slowly, her body has started to consume itself.

“It’s like from head to toe, everything just hurts,” she said.

“Malnutrition hurts. When your body consumes itself, your body is eating muscle and tendon and tissue you and things like that, that causes pain,” her husband Mark explained.

Treating that pain has not been easy.

As a chronic pain patient, Amanda feels as though she’s been slipping through the cracks of a state system trying hard to reduce prescription pill abuse.

Back in 2010, Florida was leading the nation in painkiller prescription sales, according to data from the CDC.

A statewide crackdown soon followed. Led in part by Governor Rick Scott and State Attorney General Pam Bondi, lawmakers and the DEA used newly-authorized money and resources to begin investigating and cutting off the state’s pill mills.

It worked. Prescription and drug deaths dropped dramatically. Florida was one of only two states to see a decrease in drug poisoning deaths from 2010 to 2014.

Today, Florida continues to track medications through their prescription drug monitoring program, E-FORSCE, an online database where doctors must report their prescriptions and monitor patients for potentially risky behaviors like doctor shopping.

But the problem is nationwide, and ongoing.

In March of 2016, the Centers for Disease Control issued new guidelines discouraging prescriptions of higher doses of opiates.

A local pain management specialist who declined an on-camera interview wrote in an email “…In addition, the DEA has made it clear that they wish to reduce the amount of opiate medication available by as much as 25%. These are factors contributing to the current climate of opiate-phobia.”

It can be difficult to quantify exactly how this “opiate-phobia” is affecting patients. But in 2015, a survey from the U.S. Government Accountability Office found that more than half of DEA registrants – like drug distributors, pharmacies, and pain management clinics – “have changed certain business practices as a result of DEA enforcement actions or the business climate these actions may have created.”

The survey also found many pharmacies reported stricter limits placed on them from distributors have limited to a “great extent” their ability to supply drugs to those with legitimate needs.

The Jakubowskis said it’s created a climate where patients like Amanda can’t get the help they need.

Mark said they’ve been met with disbelief and reluctance as they try to find pain management specialists willing to help.

Amanda said she’s experienced morphine withdrawal twice as doctors told her they wanted to try lowering her dose of medication to limits they felt were considered acceptable by the state.

She said one clinic closed up shop overnight, while another office turned them away after accusing them of doctor shopping.

“The frustration of trying to explain to the doctor that your wife is dying, and all I want is to know that, while I’m sitting in the chair on the other side of the room, that she’s resting comfortably,” Mark explained, “And she can’t do that because-“

“Because the abuse of all the other patients that might not have needed the medication has ruined it for the rest of us that do need it,” Amanda finished.

She has been to see three different pain management doctors in just the past four months.

She recently underwent surgery at Cleveland Clinic to implant a pacemaker in her stomach in an effort to quell some of the nausea and vomiting brought on by gastroparesis.

Meanwhile, she continues to struggle every day, still hoping for a pain management physician willing to take on her case in a system, she believes, is making it nearly impossible to get help.

“It’s been a necessity for doctors to have to be skeptical, but by the same token, there should be a step two – maybe we should somehow confirm that this patient does need it,” Mark said. “It should not be so difficult to not live in pain.”