When My Doctor Didn't Believe I Had RLS

“How do you know you have restless legs syndrome?” my primary care doctor asked me. I’d just told her I had gone off an SSRI because it had made my RLS worse and that I was now taking bupropion. All of this was in my chart. It wasn’t why I was in the doctor’s office, which was for updating my migraine medication and UTI symptoms.

I was dumbfounded.

“Because I have restless legs,” I said. When you have a headache, you might have a migraine or a sinus infection, but when you have restless legs, you have restless legs!

I swear she rolled her eyes.

I'd been gaslit before about the existence of my RLS

“But how were you diagnosed?” she asked.

“I told my previous doctor I had restless legs,” I said.

I’d been gaslit before about all kinds of things, including but not limited to the existence of RLS and my experience with restless legs. I was good at spotting and rejecting gaslighters. But the magic of years of gaslighting is that all it takes is one little flicker of doubt to send me back 2 years, when I thought all my problems were in my head and my fault. My blood pressure rose. Was I crazy?

I didn't need a sleep study — I have restless legs

My doctor looked through my chart and then said, “But you didn’t get a sleep study?”

“No.”

My daughter had gotten a sleep study to rule out sleep apnea, and a sleep study, as I’ve now researched, is not necessarily needed to diagnose restless legs. My daughter’s sleep study had been invasive to our lives: we’d had to spend the night in a hotel with her hooked up to wires. It had been inconclusive for sleep apnea, but it had diagnosed restless legs for her. If I recall correctly, it had also cost $700 with insurance.

I didn’t need a sleep study. I have restless legs.

This appointment wasn't going well

My doctor wasn’t convinced. “IF you had restless legs syndrome,” she said, emphasizing her disbelief, “some medications MIGHT make it better or worse.”

This doctor’s appointment was already not going well. She’d told me to take a drug for migraines that I’d taken before and didn’t like. She’d told me my nurse prescriber had given me a placebo for anxiety (I’m looking into it), and she’d told me she needed to record my BMI for their office’s insurance company — not mine or for my health, despite the fact that I requested to not be weighed since I was up to date on my blood work to rule out high cholesterol and diabetes.

My UTI was making me exhausted, as was my general life as a single parent in a pandemic. I’d had a stressful couple of days of parenting and my anxiety was high.

Doctors are human, and they can be wrong

Maybe she’s right about my anxiety meds. Maybe I need to give the migraine drug one more try. I don’t have to look at my weight for their insane BMI stat collection. The restless legs denial, though — that one was ridiculous.

Doctors are humans and humans can be wrong. This woman had my chart in front of her, but we’d only ever met once before. She did not know me. She did not know my life or my experience. She has been trained to see symptoms and test results, not people. She saw an “obese” (her term) woman complaining of headaches but non-compliant with medication who was using the excuse of restless legs to get attention.

We have to be our own health advocates

Maybe she thought my problems weren’t so bad. After all, I hadn’t had to care for people outside my household during a global pandemic.

Doesn’t matter.

My experiences are valid. Unfortunately, we have to be our own health advocates in the current healthcare system. We can trust our medical professionals to have had the training necessary to help us when we get sick or hurt, but sometimes, we need a second opinion and a better fit.

I’m interviewing new primary care doctors this week.