I never knew such pain existed.
This past spring, my neck suddenly went bonkers — a long-lurking arthritic problem probably exacerbated by hunching over my new laptop.
On a subjective scale of 1 to 10 (there is no objective way to measure pain), the slightest wrong move, such as turning my head too fast or picking something up from the floor, would send my pain zooming from zero to a sobbing, gasping, tears-pouring-down-the-face 10.During these episodes, which happened many times a day for months, it became impossible to talk, and impossible not to yell. A series of MRIs showed several problems: herniated discs, vertebrae sliding forward over each other, and bone spurs stabbing my nerves.
These irritated nerves kept firing, causing my shoulder muscles to spasm, which made my head to twist bizarrely to one side, where it would stay “frozen” for a half hour or more. I couldn’t exercise, work or socialize. Just going from sitting to lying down was agony.
So new, shocking and self-absorbing was this pain that I felt utterly alone, convinced no one had ever felt like this before. I also became convinced that the medical establishment is nowhere close to adequately addressing chronic pain.
The first point, of course, is completely wrong.
Indeed, in a survey of nearly 4,000 Americans published in May in the journal The Lancet, 29 percent of men and 27 percent of women reported they were in pain in one given 24-hour period.
Some of this suffering comes from neuropathic pain, that is, pain from nerves damaged by such things as shingles or diabetes. Some comes from inflammation, as in arthritis. And some from diseases such as cancer.
Not only are more than a quarter of Americans living in chronic pain, “nearly 30 percent of them are partially or fully disabled by it,” said Dr. Russell Portenoy, chair of the department of pain medicine and palliative care at Beth Israel Medical Center in New York. And pain carries a significant price tag for the country, he said, in lost productivity as well as treatment costs.
Yet less than one percent of the budget of National Institutes of Health is devoted primarily to pain research. In fact, the allocation of public money for pain research has declined in recent years, said David Bradshaw, an anesthesiology researcher at Utah and author of a new report on pain research funding due out in the fall.
“We have gone backwards in treating patients with pain,” said Dr. Perry Fine, an anesthesiologist at the Pain Research Center at the University of Utah. “It’s a huge problem and it won’t go away…. What we need is an interdisciplinary model where we can work on the mind-body connection, on the whole person, not just on medical interventions like drugs and injections that provide only symptomatic relief and don’t necessarily help people get on with their lives.”
This month, the National Institutes of Health is announcing a $375 million-5-year plan to boost funding in six neglected areas, including pain. But for pain patients like me slogging through “the system,” that may not be enough.
For one thing, there’s still too much pressure on doctors to see more patients in less time. My first pain specialist literally told me that we had 10 minutes, during which we could either talk or I could get “trigger point” injections for my spasms. So much for empathy! I got the injections (they didn’t help much) and dumped the doctor,
For another, we’re still caught in the culture wars over painkilling drugs. Yes, I tried acupuncture, physical therapy, meditation, and it was not enough. Millions of people legitimately need opioid drugs such as Percocet (oxycodone)and Vicodin (hydrocodone).
Even when used properly, these drugs are no picnic. Tramadol, a painkiller, gave me night sweats. Skelaxin, a muscle relaxant, made me sleepy and nauseous. Percocet worked fairly well, but only for three hours at a time. Even the over-the-counter pills have their problems. Ibuprofen can cause serious bleeding, Tylenol, liver damage.
Prescription painkillers also raise the thorny issue of abuse. Nobody knows how big the problem really is because the government does not track abuse of prescription painkillers separately from use of illicit street drugs. Beyond abuse, there’s the fear of “addiction,” which often leads both doctors and patients to under treat pain. Opioids do create physical dependence, which means that if you abruptly stop taking a drug such as Percocet, you will get withdrawal symptoms such as nervousness, nausea and diarrhea, said Dr. Kathleen Foley [cq], a pain specialist and attending neurologist at Memorial Sloan-Kettering Cancer Center in New York.
But that’s different from genuine addiction, which is the behavioral tendency to take a drug despite harm, to take more than is prescribed, to take it for reasons other than pain relief, such as to get high, and wind up “lying around dysfunctional,” Foley said.
Treating pain can be a nightmare. As Foley put it, “Pain wears away your personality. It limits your activities. It makes you find no joy in life. And when patients don’t respond to the treatments we give them, we start to blame their psychological state. We start to stigmatize every pain patient as having significant emotional problems.”
As for me, I went on to see a total of seven doctors, plus two physical therapists, an acupuncturist and an ergonomics consultant, who got me to buy all new office furniture.
I began to get better when I landed at New England Baptist Hospital where the doctors gave me time, understanding, cortisone shots in my cervical spine and rigorous physical therapy. At Beth Israel Deaconess Medical Center, I got Botox injections into my shoulders, which helped reduce the spasms.
So what did I learn from my ordeal? That a doctor’s kindness, always important, is especially important when you’re in pain.
I learned, too, that the immediacy of pain makes it agony to wait weeks for an appointment or an MRI — and that communicating that effectively to your doctor can save you weeks of suffering.
And I learned that you can’t go it alone. Support from family and friends is not a nice, little luxury – it’s absolutely essential.
Today, I’m still fighting with my insurer to cover continuing physical therapy. I am nowhere near cured, though I am better. But as for the millions of other pain patients, as well as those lucky folks who have yet to encounter severe, chronic pain, I’m afraid that getting help is still a crapshoot. And that really hurts.