When pain arrives - and help does not
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 one another, and bone spurs stabbing my nerves.
These irritated nerves kept firing, causing my shoulder muscles to spasm, which made my head twist bizarrely to one side, where it would stay "frozen" for a half-hour or more. I couldn't exercise, work, or socialize.
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 medical 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, which is pain from nerves damaged by such things as shingles or diabetes. Some comes from inflammation, as in arthritis.
Not only are more than one-quarter of Americans living in chronic pain, "nearly 30 percent of them are partially or fully disabled by it," said Dr. Russell Portenoy, chairman 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 1 percent of the budget of the 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 the University of Utah and author of a report on pain research funding due out in the fall.
The NIH has announced a $375 million five-year plan to boost funding in six neglected areas, including pain. But for pain patients like me who are slogging through "the system," that may not be enough.
For one thing, there's 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 debate over drug versus nondrug therapies. I tried acupuncture, physical therapy, and meditation, and it was not enough. Millions of people legitimately need opioid drugs such as Percocet (oxycodone)and Vicodin (hydrocodone).
And some doctors are disinclined to prescribe painkillers because such drugs can be subject to abuse by patients.
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 for heavy drinkers.
Treating pain can be a nightmare. As Dr. Kathleen Foley, a pain specialist and attending neurologist at Memorial Sloan-Kettering Cancer Center in New York, 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 made me 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 when something hurts right now, it is 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.
Judy Foreman can be reached at firstname.lastname@example.org.