On being believed

Nerves don't show on x-rays. Apparently underwire and IUDs do.

Cutaneous lateral femoral nerve syndrome, also known as meralgia paresthetica, is a condition where the nerves that provide sensation to the skin of the outer thigh become compressed or entrapped. Characterized by burning pain, tingling, or numbness on the outside of the upper leg, it does not affect leg strength. This condition is relatively uncommon, though there was an uptick in cases in the mid-2000s when it was fashionable to wear tight, low-waisted jeans. Tight pants and belts or heavy tool belts can compress this nerve, which is only as wide as a few human hairs. 

I was not particularly fashionable in the mid-2000s.

Low-rise jeans have never worked on my long torso. I tried to explain that to the doctor who diagnosed me with cutaneous lateral femoral nerve syndrome in 2006. He made the diagnosis after reviewing the results of a nerve conduction study he had ordered. This painful test involved inserting needles into my leg to test how well my muscles and nerves conducted electricity. 

“You need to stop wearing tight, low-rise pants,” the doctor told me. 

“I don’t,” I argued. His expression didn’t change. “Look,” I said, “when I was in kindergarten, I discovered that when I lie flat on my back with my legs straight, a spot on my right thigh goes numb. It’s the same spot that hurts now. It isn’t my pants.” 

“Well, maybe so,” he replied, one hand on the doorknob, “but let’s see what happens when you wear looser pants for six weeks.”

I did not come back to see him after six weeks. I took my pain and my appropriately-fitting pants to an acupuncturist’s office. With practiced fingers, she followed the line of my pain from the crest of my hip almost to my knee, inserting needles every few inches along the way. Seemingly by magic, the pain receded. I decided I would never again consult with a Western medical doctor about the weird-ass nerves in my right leg.

Over the intervening 20 years, my leg hurt regularly, though never as acutely as what sent me to the fashion-fixated physician. Sometimes a spot in my mid-thigh would twitch in certain positions. Often, especially after exercise or long bouts of standing, it would ache, like a toothache, in waves that would wash over me. It was unpleasant. I managed. I saw acupuncturists. I took anti-inflammatories. Sometimes, I’d use a foam roller to break up the super-dense tissue that results from being in proximity to a misfiring nerve. 

One day, about six months ago, the pain increased in volume from its usual low susurration to something from which it was harder to distract myself. Fifty-year-old me sat grimacing and remembering 5-year-old me whose experience was of a curious sensation, not pain. I started to worry that if I allowed things to continue progressing, I would have a hard time remaining as active as I plan to. I broke my no-Western-medicine consultation rule, and talked to my GP. She referred me to an orthopedist who did an X-ray that found nothing. When the insurance company declined to pay for an MRI, the orthopedist effectively shrugged. 

When I asked for advice about the MRI, my GP suggested a different tack, and referred me to the Pain & Rehabilitation Center at Hopkins. My hopes that I would get answers were flagging, but the leg pain kept coming back. I scheduled with the Pain & Rehab Center.

Around the time the MRI was being declined, I had started seeing a physical therapist for a pinched nerve in my neck. Officially, I was Lori’s* patient, but when she was unavailable, the practice put me with Cole.* About three months into the treatment for my neck, when my leg was really bothering me, the pain & rehab appointment got scheduled. About a month before that appointment, I decided to mention the cutaneous lateral femoral nerve syndrome to the PT. I told Cole about the 20-year-old diagnosis and its wear-looser-pants treatment plan. 

“Oh, that’s actually a pretty rare condition. If you actually have it,” he replied. “It is caused by tight pants.”

“I know it can be. But mine wasn’t. I’ve had it for forever, and I had an EMG,” I explained. “I definitely have it.”

“Well, those tests aren’t completely reliable.” 

“I have all of the classic symptoms, and have had since I was five.”

“Well, it might be something else, it’s a rare condition.” He wasn’t hearing me.

The conversation went on like that for a good 10 minutes. I offered evidence, he told me why it was unreliable. He never once felt my leg.

In the final 10 minutes of the appointment, as I relaxed with heat on my neck, I said “I have some feedback for you. When a patient tells you they have a diagnosis, don’t tell them they don’t.”

He started to argue with me, “that’s not what I meant,” but stopped himself. “I guess that is what I did.” 

“How old are you?” I asked.

“I’m twenty-eight.” 

“I have been dealing with this pain since before you were alive,” I told him, “So you may have an expertise I don’t have, but you are not an expert in my body.” 

I left the office and promptly made sure that I was not scheduled with Cole again.

The next time I saw Lori, I told her about the diagnosis.

“Let’s see what’s going on,” she said.

She started palpating my thigh. “Oh my god,” Lori breathed, “this is super dense.” 

As she worked to break up the hyperdense muscle with a gua sha tool, I told her about how Cole had reacted. “He has cemented my preference for female clinicians into a hard-and-fast rule,” I told her. She commiserated and agreed that she prefers to see women as well.

On the next visit, Lori explained that in her nearly 20 years of being a physical therapist, she’d seen close to 30,000 patients, and I was only her third with this condition. I realized Cole’s skepticism was likely because he had never seen a case of cutaneous lateral femoral nerve syndrome in his career, which, at 28, couldn’t be more than 5 or 6 years. 

Lori invited her intern (with my permission) to feel the difference in the tissue between my two legs. I wondered if Cole, on the other side of the treatment area, wished he had investigated. I didn’t ask him.

When I finally went to my appointment with the Pain & Rehabilitation Center, I had low expectations. With Cole’s skepticism so recent in my memory, I walked into that office ready to fight for some sort of treatment. After the tech took my vitals (my blood pressure was a little high. Maybe because I was ready for a fight?), a visibly pregnant woman in her thirties came in and introduced herself to me as the doctor. 

She asked me what brought me in. I started telling the story, again: the curious feeling when I was five, the acute pain twenty years ago, the EMG, the current toothache-like pain. And then something absolutely remarkable happened. She believed me. 

She explained how EMGs can be unreliable, and I started to wonder if I’d been too hard on Cole. But when she followed it up with, “I’m glad they were able to get conclusive readings,” I knew I had not been. 

She told me about a possible treatment: an injection of saline, cortisone, and lidocaine around where the nerve exits the fascia to give it a bit more room. It would probably bring me some relief, at least for a while. She asked if I wanted to try it. I said I did, and pulled out my calendar to figure out when I could have it done. 

“That’s great,” she said, “we’ll have to go into the exam room next door. I need the ultrasound to know where to inject.” 

I could hardly believe it. She was going to do the treatment RIGHT NOW. I felt tears welling as I walked into the next exam room. I barely remember what happened next. I know I put on some very unflattering hospital shorts. She used the ultrasound to find the spot where the nerve exits the fascia to run along the outside of the leg – just above where my leg meets my pelvis. She pointed out the nerve to me on the screen, but I had to take her word for it. When the injection went in, I felt a line of coldness move down the outside of my leg, almost to my knee. She told me that was a good sign. And just like that, it was done. 

The whole encounter took 40 minutes: from the moment she introduced herself to when I walked out of the second exam room dressed, once again, in my own clothes. In the month since, my leg is not completely pain free, but that toothache sensation is resolved and my experience now is closer to the curious one I knew as a five-year-old.

When I sat down to write this essay, I approached it with a degree of incredulity: there was something that could help me and that took less than 40 minutes to administer and I’ve been managing on my own for all this time. But I'm realizing I wasn’t managing on my own. There have been a handful of women along the way: at least four acupuncturists and as many massage therapists – and Lori, who’s officially treating my pain in the neck – who helped me manage this pain. Each of them brought me relief. And in each case, relief started with the simple fact of being believed. 

*Not their real names