I’m trying to get into a clinical trial for a new chronic-pain drug. You’d think I was competing for a seat on the Virgin Galactic space shuttle.
After nearly five years of pushing through excruciating pain with epidurals, pain meds, hot baths, lumbar traction machines, physical therapy and sheer mental will, I finally succumbed last February to a spinal fusion surgery. I knew it would be bad; I didn’t expect it to make childbirth seem like acid reflux.
The surgery was a success. But the surgeon’s worst fear came true. The titanium cage (an internal cast with four screws) caused more pain due to my weight having plummeted to 80 pounds from the side effects of enough morphine to flatten an elephant.
Each appointment at the pain management clinic was an exercise in humiliation, being drug-tested and interrogated, yet another indignity people in chronic pain endure.
Which used to enrage me. Why would any doctor put someone in verifiable pain, with no history of substance abuse, through more suffering?
There is a raging debate among medical providers over the pros and cons of prescribing opioids: The frightening rise of overdose. The risk of addiction. Previously law-abiding citizens taking to the streets in search of anything to relieve the intractable pain that makes each day a struggle to survive.
Unfortunately, it turns out that less than 30 percent of patients are compliant with their doctors’ orders, justifying the medical community’s fear.
What isn’t justified is treating people in chronic pain like junkies. There’s a distinction between drug addiction and chemical dependence. The first describes using recreational drugs to get high; the other describes the inevitable tolerance that builds up, requiring escalating dosages to get the same relief.
Ultimately it doesn’t matter. Whether you’re a junkie or a chronic-pain sufferer responsibly following doctor’s orders, you still end up hoarding your stash, licking the inside of your purse and screaming at the pharmacist.
Like many states, Minnesota (where I live) has dragged its feet on legalizing medical marijuana. As a close friend in Boulder, Colo. — where there’s a “candy store” on every corner — aptly remarked: “Where are Hubert Humphrey and Paul Wellstone when we need them?”
For the record, I don’t particularly like walking around in a daze. But in late December, a long-awaited breakthrough provided a temporary glimpse of hope. After a long, contentious battle, medical marijuana for chronic pain finally became legal in Minnesota.
At my next appointment, I broached the subject. Averting his eyes, my doctor sheepishly explained that every physician at every HMO in Minnesota had signed a contract refusing to prescribe it.
Is this even legal? Can a medical provider refuse a legal treatment that’s been researched more than the polio vaccine and HIV/AIDS cocktails together?
Why is it OK to prescribe dangerous, addictive drugs like fentanyl patches and oxycodone while withholding an herbal remedy, proven to reduce pain and ameliorate the side effects of chemotherapy for people literally fighting for their lives? Because it threatens the pharmaceutical industry? Can we ethically live with the notion that the bottom line trumps compassionate health care?
My doctor’s next move shocked me even more: Taking out a pad of paper, he scrawled the name and number of a doctor friend, handed it to me, and said,
“Tell him I sent you. You’ll probably have to pay him on the side, but he may be able to help.”
So now my doctor is sending me to his dealer.
Instead, I tried gaining the 10 to 15 pounds my surgeon thought was the best solution. If we could pad the cage, we could solve the problem. Wean myself off the opiates and maybe I’d be able to eat, in which case I’d gain the weight, which ostensibly would diminish the pain so I’d no longer need the opiates.
Two months of grueling withdrawal later — the whole nine yards: chills, shaking, violent runs, lying on the bathroom floor tearing my hair out, rocking back and forth in a fetal position — I hadn’t gained a pound. Whipped cream. Fatty steaks. Ensure. I even begged the hospital to be tube-fed (yet another procedure Medicare wouldn’t cover). Nothing would stay down.
Author Melody Beattie says: “Hitting bottom is when your worst-case scenario starts to sound like a good idea.”
By now, all the surgeon had left up his sleeve was a second surgery: cutting open the incision and removing the hardware. Desperation is a powerful incentive. Terrified as I was, I couldn’t wait. Until a CT scan showed that the graft hadn’t fully fused. “I’m sorry,” the surgeon said. “We can revisit it in a year.”
A year? Are you f-ing kidding me? I counted my pills, fantasizing about what it would be like to wash them down with Vodka, overriding the panic so I could put myself out of my misery. The way we’d put a beloved pet down when life’s quality hits a dead end.
I couldn’t do it. So I picked myself up and searched for new treatments. Since then I’ve had two nerve blocks. After six weeks of physical therapy, I’m pre-authorized for radio frequency ablation, a process of burning the nerve ends, which typically results in weeks, sometimes months of increased pain while the nerves are dying. There’s a 50 percent success rate.
Next, summoning my Can-Do-Won’t-Take-No-For-An-Answer attitude, I set about to find a clinical trial, several of which are currently in process, showing impressive results.
Again, I hit a wall.
After speaking to both the FDA and three pharmaceutical companies, I was advised that the only way to participate is through a recommendation from my doctor. Armed with abstracts, statistics, names and numbers, I asked my surgeon to make the call. He referred me to my pain doctor, who reluctantly agreed to “look into it.”
It’s been nearly a month. He’s still waffling. I’m still waiting. Clearly a new, well-researched, FDA-approved med for chronic pain won’t line the coffers of companies — and make no mistake, this is business we’re talking about — whose net profit is based on sticking needles into your spine or skewering your back with a scalpel.
Sometimes it’s infuriating to harness whatever precious little energy remains to fight for what I thought was the definition of health care: To provide the least intrusive, effective way to return patients to their most optimal existence, given the limitations inherent in being human.
This issue is reaching epidemic proportion and growing exponentially as the population ages. We must keep searching for answers. And holding our doctors to the Hippocratic oath: To. Do. No. Harm. And we certainly are in harm’s way.
Without a revolution in how people living with chronic pain are treated, we share the blame. We can get involved or we can stand by, intellectually aware but emotionally detached. Until we, or someone we love, is randomly stricken by an illness that leaves them in chronic pain, with all its attendant casualties. By then, it may be too late.
Ellen Sue Stern is a Twin Cities author. Her upcoming book is “On A Scale of 1-10: When Chronic Pain Hijacks Your Life” (ellensuestern.com).