Siobhan Reynolds - Still Fighting Pain

Partner Still Fighting Pain; Polly Sumar; Albuquerque Journal; 2007-08-23. Posted by DeLuca: War on Doctors/Pain Crisis blog of the Pain Relief Network; 2007-08-24.

See also:
The Chilling Effect video - about Paey & Reynolds
Reynolds on Mike & Juliet (Fox)

Imagine that your spouse has a congenital joint disorder resulting in so much pain that entire days are spent in a darkened bedroom. There’s a drug that relieves the pain, OxyContin, but doctors won’t prescribe enough of it to do the job.

Why?

“They’re afraid of having their offices raided by DEA agents,” said Siobhan Reynolds, 46, co-founder of Pain Relief Network with her late partner, Sean Greenwood, who died a year ago today at the age of 50 of a cerebral hemorrhage because of what Reynolds described as under-medication of his pain.

Sitting in the front portion of her mother’s home on Acequia Madre, where Reynolds now lives with the couple’s son, Ronan, 15, she said the battle is not over, even though Greenwood is gone.

“I spend all day on the phone with lawyers,” said Reynolds, because of the network’s Clinical Litigation Project, challenging the government’s crackdown on pain medication. And just last month, she testified at the House Judiciary Committee on Drug Enforcement Administration Oversight, trying to bring attention to the dilemma that pain sufferers face. (See: DEA Oversight Hearings Testimony and submitted Supplemental Documents)

She told the committee, “Our government does not keep track of the number of people who commit suicide because they can no longer endure the pain.”

But how could under-medicated pain cause someone’s death?

“Sean had a congenital connective tissues disorder called Ehlers-Danlos,” Reynolds said. “The syndrome meant that his veins and arteries aren’t strong like other people’s because of a lack of collagen, so they’re more vulnerable to a stroke. Untreated pain causes more hormones in the body to be released and blood pressure to increase, making him more susceptible to a stroke (cerebral hemorrhage).”

It was Greenwood’s battle with pain that caused the two to start the nonprofit organization to bring attention to the dilemma. PRN is a network of patients, family members, physicians, attorneys and activists who are trying to get relief from both pain and legal prosecution.

Even if the under-medicated pain hadn’t killed Greenwood, Reynolds asked, why should anyone have to live in pain when there are drugs that could relieve it?

That’s the question that mystifies Reynolds.

“There are still people in this community and in our families who think Sean was an addict and I was an enabler,” Reynolds said.

“We knew what worked with Sean’s pain,” she said. “OxyContin, Diluadid and Fentanyl.”

But those drugs are opioids, a family of synthetic drugs similar to opiates such as morphine and codeine, and a group of drugs that scares doctors, she said.

Reynolds believes that the country has swung too radically to the side of fearmongers who would have doctors arrested for prescribing certain kinds and amounts of pain medication.

“And many in the public seem to think that if you take drugs like OxyContin for pain, you do it to get high, no matter what your reasoning for taking it,” she said.

“If you’re in pain and you take OxyContin, you don’t become high,” Reynolds said. “There’s a saturation of the pleasure centers in the brain - you build tolerance. It’s mostly quite sedating. Somewhere, somebody is having a good time on OxyContin, but it wasn’t Sean.”

Too late
In August 2006, Reynolds and Greenwood, with Ronan in tow, set out on yet another pain-relief mission - this time a car trip to Oklahoma - to reach the office of a doctor who was willing to write a prescription for the medication Greenwood needed.

In the 18 years since the couple had met, they had worked with a host of doctors, drugs and alternative cures. Greenwood had even gone through a somewhat successful experimental surgery in South Africa in which the muscles of his neck, which had grown into his skull, were cut in order to relieve his excruciating headaches.

So last August’s trip didn’t seem entirely unusual. Once in Oklahoma, the doctor wrote a prescription to a pharmacy in Florida for liquid Fentanyl to be shipped to the hotel where the couple was staying.

But the next day, when Reynolds tried to rouse Greenwood, around 7 a.m., he was dead.

“The Fentanyl came FedEx around 11 a.m.,” said Reynolds, who believes that if it had arrived in time, Greenwood would still be alive.

“The coroner was there, the police were there. Whenever opioids are there, it’s a crime scene,” she said. “They sat there staring at me for a very long time to make sure I was appropriately bereaved.”

Continuing the fight
When Reynolds and Greenwood first met in 1989, at his adobe casita next door to Reynolds’ mother on Acequia Madre, Greenwood was suffering from debilitating headaches. After graduating from St. John’s College in 1986, Greenwood - a lover of music, literature and 1930s and ’40s movies - was working as a legal assistant at the Montgomery & Andrews law firm.

Young and confident and armed with an inheritance from Reynolds’ grandmother, the couple decided Greenwood should quit his job so he could deal with the headaches. Besides, Greenwood was 6-foot-4, had grown up in Midland, Texas, working on oil rigs, and was a healthy, fun-loving man, other than the headaches.

They soon found out the reality of Greenwood’s condition. The congenital syndrome was diagnosed, and the pain, which soon moved to his joints, seemed to worsen.

That pain is still a reminder and an inspiration to Reynolds, who said she is fighting not just for the some 10 million people suffering from out-of-control pain, but for Ronan, who was diagnosed two years ago with the same syndrome as his father.

Reynolds, who has supported her family working as a college professor, screenwriter and film director, attended law school in Southern California for a year before deciding it wasn’t for her and moving to Santa Fe. She said her inheritance is gone, and she will have to find a new way to make money.

“But I’m very resourceful,” she said, adding that continuing the PRN is a given.

“I tried like crazy to save Sean’s life, but I didn’t succeed,” Reynolds said. “Maybe it will for someone else.”

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