7 Lessons I Learned Through My Tortuous Journey With Severe Back Pain
Lessons learned about opioids, surgeries, good posture, and the U.S. healthcare system.
Zerbor, Billion Images, Alexander's Images | Canva I was no stranger to back pain. In my early forties, I had three episodes of severe lumbar pain, lasting several weeks each. Lumbar is just the word doctors use for “low back.” An MRI showed degenerative disc changes at several levels in my lower back and neck, as well as significant narrowing, or “stenosis,” of the bony passageways through which the nerve roots leave the spinal cord.
The month of my 50th birthday I ruptured a disc, sending me crashing to the floor in a seething, slashing, crushing black wall of pain.
By the time I had minor disc surgery two months later, my left thigh was three inches smaller in circumference. When nerves stop working, muscles wither. Although I had a partial recovery, I was left with some permanent muscle atrophy and weakness. With the help of regular back exercises, a well-designed chair, and lots of luck, I made it another dozen years without back pain. I was even able to resume running.
Then, in June, lower back and thigh pain returned. Within a day, the pain became severe. Trying to salvage something good out of the subsequent two months of pain led me to write this article.
No position offered freedom from pain, but standing felt the worst. I could make it only a few seconds before I had to drop to the ground and roll back and forth for relief.
I went from walking or running three to eight miles every day, to home confinement. I showered on the floor. I prepped dinner in five-minute increments, wincing in a chair. When I sat for work, I braced my torso with straight arms and hands locked to the seat of the chair, trying to stretch and provide traction for my spine.
I started downing 15-year-old hydrocodone, unused from a previous bout of back pain. My new doctor renewed the prescription. Two weeks in, the pain got much worse. Early morning, trying to stand, pain scorched through me. I fell to the ground, rocking, groaning, crying, and cursing for the next two hours.
No position relieved it. Four pain pills didn’t touch it.
In the ER, the MRI showed what I already knew from the pain and weakness in my hip and knee: The L3–4 disc was crushing the nerve root. During my 10-hour ER stay, I welcomed three doses of IV pain medication. The ER doctor referred me to a pain specialist who “can get you in quickly” for an epidural cortisone injection.
I called the pain specialist. I also called a neurosurgeon for a consult, since the MRI revealed disc herniations at all five lumbar levels, along with substantial stenosis at multiple levels. I waited, in pain, to hear back. I called again. And again. Still. In. Pain.
At week five, I finally got in to see both doctors.
The pain specialist agreed a spinal steroid injection would likely help alleviate pressure and pain from the bulging disc. The surgeon felt that a minor “disc decompression” surgery was indicated, particularly if a steroid injection didn’t help.
Given how long it had taken to get an appointment, and being in ongoing pain, I tried to schedule both procedures. And waited. And suffered. And waited. I called the surgeon’s office repeatedly since that path appeared to lead to a more long-term resolution than the injection.
At week six I felt a tiny bit better. I tried walking a tenth of a mile. Within two hours I was reduced to crawling. Even brief standing was unbearable.
As a high school swimmer, the crawl had never been my preferred stroke — but butterflying across the concrete floors of our home was out of the question. It was three days before I could take even a few steps.
Weeks seven and eight I felt a little better. I could walk that tenth of a mile without consequences.
They scheduled the surgery. More than nine weeks after the pain began, the surgeon cut open my back to trim away parts of the disc that were still crushing the nerve, and to enlarge the bony passageway so that the nerve root had more wiggle room. The operation helped. My pain is gone. I’m regaining strength and muscle mass in my leg.
Back pain is really common.
Back pain is one of the most frequent reasons people see a doctor. More than half of individuals will have an episode of severe back pain in their life.
I saw examples of this on my first day of work during my recent episode of back pain. Four of the ten psychiatric patients I talked with had back problems far more chronic and severe than mine. Two of them already had multiple surgeries including vertebral fusions, and the other two had operations pending.
Most explanations for the prevalence of back pain blame our upright walking posture, and the wear and tear from hard use. But we’ve had at least four million years to adapt to walking, and before that our ancestors were mostly swinging through the trees, upright. Countries where people expend much more physical effort on a daily basis don’t have higher rates of back pain than those in more sedentary countries.
To me, anthropologist and back expert Esther Gokhale makes a convincing case that rather than an upright stance, it is how we stand, sit, walk, and work that explains most of our back pain. Bad posture promotes the accumulation of damage to our vertebrae and the discs between them.
People who knew that I was a long-distance runner immediately blamed that as the major contributor to my back problems. While I can’t rule out that it had a role, I usually respond that in five decades of running, including completing 100 marathons, only once did I have back pain while running or in the hours after. I ran two days before my recent two-month journey with pain, without even a hint of low back discomfort. Back in 2002, running Cincinnati’s Flying Pig Marathon actually resolved one of my first, week-long bouts with back pain.
My running posture has always been far more ideal and ergonomic than how I walk, stand, or sit.
Here are 7 lessons I learned through my torturous journey with severe back pain:
1. You may not need an MRI
When your back hurts, you want to know why it hurts, and what can stop the pain. It seems reasonable that getting an MRI would lead to answers. (A CT scan doesn’t reveal either discs or nerves with nearly the clarity of an MRI.)
But numerous studies in the last three decades show that for many people with low back pain, the MRI scans look normal. Many people with no back pain display MRI abnormalities. And in both cases “many people” often includes more than half of those scanned!
Furthermore, most acute low back disc pain largely resolves within six weeks. But a pattern of pain that is extreme, extensive, doesn’t fit a simple disc problem, or is associated with a loss of nerve or muscle function, provided a compelling reason for an MRI. Injuries, infections, and tumors are less common than disc and degenerative back problems but are potentially treatable.
2. Where the discs go may be only half your problem
Back pain discussions often focus on the discs, whether one is “herniated” (which just means sticking out where it doesn’t belong) or “ruptured” (where soft content from inside the fibrous disc gets squeezed out, like toothpaste).
Discs are usually only part of the story. Most backs with acute disc problems also have a background of slowly progressive arthritic changes to the bony vertebra. Chronic vertebral deterioration can contribute to pain.
Your “backbone” isn’t at all one bone, it's a tower of vertebral bones, stacked upon each other, with fibrous discs between them. And no, discs are not cartilage. The vertebrae aren’t just scaffolding to support your body, they also provide protection for the spinal cord. But the vertebral column can’t just seal off your whole spinal cord from the rest of your body, it has to allow pathways for nerves to enter and leave.
At each vertebral level, a nerve root (one on each side) exits the spinal cord and travels through a bony passage between two consecutive vertebrae to convey information to and from the body. Inflammatory changes to the vertebra can cause stenosis or the narrowing of this passageway. If stenosis progresses far enough it can cause pain by putting pressure on the nerve.
Normally nerve roots have plenty of wiggle room, but if the passageway is too stenotic, the nerve root is held pretty rigidly in place. When a herniated disc enters the picture and encroaches on the nerve root’s territory, the nerve root has no room to retreat out of the way. So stenosis makes it more likely that a herniated disc will damage the nerve root, rather than just pushing the nerve aside. Even if a herniated disc recedes back to its home turf (more below), surgically reaming out the passageway gives the nerve root more leeway if there are future disc problems or direct trauma.
3. Inflammation is your frenemy
Most lumbar disc pain resolves within six weeks. Whether you do acupuncture, surgery, spinal injections, physical therapy, bed rest, or no treatment at all, it’s likely to improve. This doesn’t mean that some approaches may get you there more quickly than others. But the magic wand that often waves away the physical presence of the disc, and relieves pressure on the nerve, is inflammation.
Inflammation is a two-edged sword. Much of the pain caused by a herniated disc comes from inflammation and irritation of the nerve root. But inflammation also directs white blood cells, and a cascade of chemicals to come in and chew up disc fragments that are in places they don’t belong, relieving pain.
A very common starting recommendation for back pain is medications like aspirin, ibuprofen, and naproxen, which are anti-inflammatories as well as pain relievers. But we actually don’t know what timing or dosing of these drugs is optimal, rather than impeding your body’s ability to clear out a damaged disc.
Meanwhile, there’s no convincing research that pain medications improve chronic back pain over time. “With the exception of opioids, most pain-relieving medications are barely better than a placebo,” says Ted Kaptchuk, director of the Program in Placebo Studies at Harvard-affiliated Beth Israel Deaconess Medical Center.
4. Pain hijacks your mind and body
Pain signals that some force is damaging the body, and instructs the animal to withdraw from or escape that force. Pain is designed to hijack your attention, to inform you that this is the most important issue going on with your body right now. Meditation and other strategies that redirect attention can make pain more manageable.
Pain affects the whole body. My blood pressure increased by 30 points when my back pain arrived, and stayed elevated the whole two months. On my ER pain-crisis day, my blood pressure had rocketed to 174/88.
5. We don’t have good pain-o-meters
We’re usually asked to rate pain on a highly subjective scale of 1 to 10. But since pain hijacks the mind, it’s hard to recall or compare the pain you experience now to past pain.
I rated my ruptured disc at age 50 as a 10/10 because I had absolutely no choice when it knocked me to the ground. I put my ER visit day at a 9/10, even though it too knocked me to the ground, but it felt like, well, maybe, I could have resisted that.
Both the research and treatment of pain are crippled by a lack of objective measures. We are also limited by language to try to describe the nature of pain, whether it is hot, sharp, throbbing, cutting, tearing, …
6. Pain pills are gateway drugs
Everyone who takes pain medication doesn’t end up addicted. But three-quarters of opioid addicts, and 80 percent of heroin addicts, started out with prescription pain meds.
Many people report feeling “high” or in a pleasant, zoned-out state from hydrocodone or oxycodone. For me, even the lowest doses of these drugs induced constipation and grogginess, neither of which I found enjoyable. This is part of why I had these pills sitting around my medicine cabinet for a decade and a half.
Tolerable doses of hydrocodone or oxycodone at their best took the edge off of my moderate pain, reducing it by maybe 10–15 percent. When my pain was most severe I didn’t detect any impact at all. So I thought I was pretty impervious to the seductive charms of these medications.
But the IV of Dilaudid (a pain med) I received in the ER opened my mind. It didn’t just reduce my pain. It sent me into a beautiful, trippy space, where — wow — I wasn’t in any pain at all. I was only two weeks into my saga at that point, but it felt that pain was my constant companion. Escape from pain felt revelatory.
I have now experienced how these medications can seduce the mind. It reminds me that virtually nobody, on seeing an opioid addict sprawled on the pavement, or reading about one online, says to themselves, “Gosh, someday I’m going to be like that.” People don’t make conscious decisions to become addicted.
7. The US healthcare is really broken
I have good insurance. I’m an informed “consumer” of health care. I’m a doctor. For my entire career as a psychiatrist, the majority of my patients have had Medicare, Medicaid, Obamacare, or no insurance at all. They often attribute delays in treatment, or perceived problems in care, to their inadequate insurance. They seldom believe it when I share some of my own experiences as a patient in the US healthcare system.
Two weeks after my initial visit with the surgeon, when I called to schedule surgery, the office staff said that they were waiting for approval from insurance. When I told them that pain was improving, but muscle weakness and atrophy were progressing, they finally arranged a time in the operating room. Four days later the scheduler chirpily announced that they had just found out that they actually didn’t need pre-certification for the procedure after all!
Ten weeks to the day after my pain started, eight weeks after the ER had recommended him, five weeks after I had seen him, and five days after my minor back operation, the pain doctor’s office finally called to set up a steroid injection. I let them know it was no longer necessary.
Some of the delays in treatment derive from my choice to live on an island with a population too small to sustain most medical specialties. But I was willing to, and did, fly to the big city of Honolulu for my surgery. Some of the delays may flow from the no-hurry-no-worry aloha culture of Hawaii. But treatment in San Francisco a decade ago wasn’t any more prompt.
When I share my story with friends from across the United States, they’re all able to match, or one-up my tales of delays in medical treatment.
Clearly, it will be a back-breaking endeavor to fix our healthcare delivery system. Sharing my experience of pain and frustration is one way of “talking back” to the current notion that we have the best healthcare system in the world. Hearing about the personal suffering from delayed care can encourage all of us to fight for improvements.
John Kruse is a psychiatrist, neuroscientist, marathon runner, and author living in Hawaii. He writes extensively on Medium and creates videos on his YouTube channel about adult ADHD, sleep, and other mental health and well-being topics.