This 38-year-old woman visited countless medical experts over 4 years—and came away with countless misdiagnoses. Finally, one specialist actually read her MRI and discovered the real cause of her debilitating pain.

By Korin Miller
July 20, 2020
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This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.

I never understood why people made such a big deal about back pain until I experienced it myself—and spent years trying to figure out why it was happening to me.

My back pain started in 2016, a few months after the birth of my second child. It came on suddenly: I woke up one morning, tried to roll out of bed, and couldn’t. My back had stiffened up, and doing basic things like bending over to spit out my toothpaste in the sink or leaning down to shave my legs in the shower were agonizing. Holding my baby was incredibly uncomfortable, but he didn’t want me to hold him any less than usual, and he didn’t understand what was going on. I didn’t either.

A big thing I noticed: I had trouble going from a sitting to a standing position. If I sat in the car for a 10-minute drive, it would take five minutes or more for me to be able to stand fully upright afterward. I hobbled through my son’s daycare like a granny during pickup time, hoping no one would notice.

I also had difficulty carrying any amount of weight. Suddenly, the simple act of toting around my reusable water bottle or purse became too much.

At the time, I assumed my pain was due to carrying my son’s car seat a weird way and causing poor posture or running too hard. I’ve been a long-distance runner since I was in middle school, and I ran competitively in high school and college. Running five or more miles a day was just part of my life.

So, I Googled back pain remedies, took some OTC anti-inflammatories, tried icing and using a heat pack, and got through my workday standing up. Nothing really did the trick, so I went to my primary care physician, whose practice is near me in Lewes, Delaware. He spent about three minutes in the room with me, asked if I wanted prescription painkillers (no—I was breastfeeding), and told me to check out physical therapy. He never even did a physical examination.

I went to physical therapy, where I was told my pain was likely due to my tight hamstrings from running. I was shown a few stretching and core strengthening exercises, then sent on my way. Two weeks or so later, the pain slowly got better. I wrote it off as a weird thing, and went about my life.

Six months later, the pain was back. This time, I noticed I had some tightness in the muscles in my butt. I figured out some workarounds, like putting the seat in my car way back while I drove to try to minimize bending over. I was embarrassed to be in so much pain, and I would pretend to rifle through my car once I got to my destination to allow myself time to get comfortable with standing fully upright again.

I went to an orthopedist, who met with me for a moment and ordered an MRI. Afterward, he informed me that I had two herniated discs in my lower back. Basically, he said, some of the rubbery discs between my vertebrae that are designed to cushion those vertebrae were pushing out and putting pressure onto my spinal cord. That was causing the pain, he said.

He gave me two options: start getting regular cortisone injections or have surgery. I was in my early 30s, and it seemed extreme for someone of my age to need such drastic measures. I was also trying to get pregnant again. So he sent me back to physical therapy. This time, the therapist adjusted the exercises I was given. It didn’t help.

About six months later, it happened again. And again. Each time, the pain came out of nowhere and would last anywhere from one to three weeks. I would see a physical therapist teach time, but it never really seemed to matter much.

I started to do my own research and discovered that it’s actually common for people to have herniated discs and have no symptoms. I began to wonder if my herniated discs were even the cause of my problem, or if they were just incidental.

So, I saw a back pain specialist who has an office an hour away from my home. He told me, within 30 seconds of seeing me, that my purse was too heavy and that I needed back surgery. “If you don’t, you’re just going to have to live with the pain,” he said. He only spent five minutes with me. I left his office, crying.

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Once again, I went back to physical therapy, where a rotating cast of therapists tried to diagnose me. One suggested my flare-ups were happening because my posture wasn’t great; Another flippantly suggested I might have multiple sclerosis. I switched physical therapy practices where a therapist told me he didn’t know what was behind my pain, but would try to treat me, regardless.

No one even bothered to look at my MRI results.

I started to look outside my area for help. I contacted a few back pain specialty clinics that were out of state, including one that required an application before you could be seen. No one even responded to my application or to my repeated phone calls.

Every six months or so, the pain would be back. It happened infrequently enough that I wouldn’t stress about it when it was gone. I was a mom of three at that point, and didn’t have a lot of spare time to worry about my own issues. But, when it came back, the pain consumed me.

I finally reached my breaking point in February 2020. It was the weekend of my older son’s birthday, and our family took a three-hour road trip for an ice hockey game he had out of state. The plan was to spend the weekend at a fun hotel, see some sights, and celebrate with him. My back pain flared up on the way, and I spent the entire drive flipping from side to side, hoping it would go away.

This time was worse than it had ever been. Aside from the hockey game, I barely left the hotel room. I spent much of the day lying on my stomach with a bag of ice on my back. I tried to have dinner with my family in the hotel restaurant one night and had to leave because it was so agonizing to sit down. My husband took our two sons out to museums while I stayed behind in the hotel room with our baby, hoping the pain would go away.

I happened to be texting with a friend at the time who is a foot and ankle surgeon. She mentioned that her practice just hired a back pain specialist and suggested that I see her. I made an appointment right away, and I saw the doctor a few days later.

The experience was completely different than all the others. The doctor spent 10 minutes looking at my MRI outside the exam room before she even came in to see me. Once she did, she sat and talked to me about everything that had happened so far. She examined me—something other doctors hadn’t done—and explained to me that my symptoms weren’t consistent with a herniated disc. “Back surgery would do nothing for you,” she said.

She then went over my MRI with me and showed me that I was developing degenerative disc disease, which is a condition where the discs between the vertebrae lose their cushioning and cause pain. Looking at my MRI, the cushioning between the discs in my lower back are dramatically thinner than they are in other areas of my spine. No one had ever even mentioned this before.

The flares I was experiencing were my back telling me that it had had too much, the doctor explained. My body had learned to deal on some level with the lack of padding in my back, but eventually things would build up until the back pain would come on hard and fast. That was my back’s way of telling me I needed to ease up, she said.

I felt like I was finally being heard. The doctor recommended that I also get the bones in my legs measured “just in case”—no one had ever suggested that before. She then delivered a blow: I needed to stop running. I had been running on a regular basis since this back pain journey had started, but the high impact exercise was terrible for my back, the doctor explained. If I kept it up, she warned, the pain wouldn’t just come in flares—it could become constant and I could end up in a wheelchair. Any other high impact exercises were out, too. No one had ever said anything about that to me before.

I cried—I’ve been running for so long that it feels like a part of me—but I also felt relief that I finally had some answers.

I had the bones in my leg measured by another specialist in the practice and discovered that one leg is a centimeter shorter than the other. It seems minor, but the doctor told me that discrepancy can throw your whole body out of whack and cause debilitating pain.

The way I approach my back health is completely different now. I have to wear a heel lift in my left shoe at all times to try to correct the imbalance, and I can no longer walk around my house barefoot. I now do cycling and walking for exercise, and I started doing strength training as well. I miss running, but not as much as I thought I would. My last back pain flare was so terrible that I know it’s not worth the risk.

My doctor also prescribed a pain medication regimen—the anti-inflammatory naproxen—for whenever I feel another flare coming on, and she urged me to call her ASAP if it doesn’t work. But I haven't had any pain. I'm very careful to always wear shoes with the heel lift on one side, avoid jumping and running (even after my kids), and follow the other advice from my doctor. I haven't had any flares and feel pretty great.

After years of worrying about when my back pain would flare up, I feel like I finally have control over it. It took four years to figure this out, and countless medical professionals wouldn’t take me seriously. I’m frustrated at all of the time and money I wasted trying to get answers, but I’m so relieved that I finally have them.

I'm embarrassed that I allowed my back pain to go on as long as it did, and that I was so willing to accept that pain would be a part of my life, even though I was clearly blown off by several doctors who saw me. Don't make the same mistakes I did. I could have avoided years of chronic pain if I had just pushed a little harder for answers. If you find yourself in a similar situation, advocate for your health and keep on advocating until you get an answer that makes sense. I'm so glad I finally did—but I wish I had sooner.

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