“I knew my doctors were wrong!”
After seeing a string of physicians for her overwhelming fatigue, Carol Young, 58, was still without answers. Here, how she discovered the surprising culprit and regained her vitality
How am I going to get through this? Carol thought to herself while lying on the sofa as her husband, four kids and a jumble of other family members chatted and laughed around her. “I was used to big, noisy family gatherings, and I loved them, but for some reason, I was so exhausted that I couldn’t follow the conversation or interact with anyone. It felt like I was floating above it all—like I was there, but I wasn’t. All I wanted to do was sleep!
Tired all the time
“I had always been a dynamo. My days were jam-packed: getting dinner in the Crock-Pot, then working all day at a travel agency answering phones, taking reservations and occasionally leading tours. Once I got home, it was on to cleaning, having dinner and spending the evening chatting, watching TV and crafting. But about seven years ago, everything started to change when exhaustion became my new norm.
“My brain felt foggy. In the mornings, I could barely move and couldn’t even form sentences! I slept through the night, but always felt like I needed a nap. And my balance was off—I was walking into things. I was making mistakes at work too. Once, I booked a couple on the wrong tour. The worst part was that the tour they’d wanted had filled up, so they had to go on a waiting list. I felt horrible!
“Even my ‘good days’ weren’t good. And our budget took a hit since I was too tired to cook and we started buying takeout to get by. My poor husband carried the weight of keeping the family and household on track because I was a zombie. He tried so hard to convince me that it was okay if I didn’t get things done. I felt so guilty.
“So I went to see my family doctor. She asked about my sleep, but said it probably wasn’t an issue when I told her I fell asleep quickly and slept through the night. Even when I described my exhaustion, she assured me people with issues like sleep apnea wake up many times a night and usually snore. That wasn’t me. Still, she prescribed sleeping pills, saying they might help, but they didn’t. In fact, they made me feel even groggier.
“I started Googling like mad. I knew it had to be an issue with my sleep because I woke so unrefreshed and my blood work had ruled out thyroid problems, anemia and other
physical illnesses. I went from doctor to doctor, begging for help, until finally one of them ordered a pulmonary sleep study to check for sleep apnea—but my results were normal. I was so unhappy! It seemed like common sense that if I felt tired after a full night’s sleep, I must have a sleep issue! The fatigue was so bad, I had to quit my job. I spent most days lying on the couch. I barely moved and told myself I’d had a successful day if the laundry was done by bedtime. “I finally got a spark of hope after a visit to a psychiatrist. I broke down, describing my worsening exhaustion. He listened, and since everything else had checked out fine, he recommended I see a doctor whose focus is sleep disorders.
An answer at last!
“The sleep specialist ordered a more comprehensive sleep study—one that would assess how sleep affected my entire body, including my brain, heart and muscles. I had to wait two months for that appointment, but the test was life-changing! ‘Oh, honey! You’re an acrobat in your sleep!’ the nurse said when I woke up. I almost broke down crying—at last, I was going to find out what was wrong and get it fixed.
“When I met with the doctor to discuss my results, the first thing he said was, ‘Carol, no wonder you’re so tired.’ I fell asleep in less than a few seconds, but I literally moved my entire body the whole night! He said I had a condition called periodic limb movement disorder (PLMD), which kept me from getting the restorative sleep that recharges the body and brain. And my husband never noticed because he was such a deep sleeper himself!
“That very day, the doctor started me on a Neupro patch, which is used to treat Parkinson’s disease, along with a new antidepressant because he said the one I had been taking was making my PLMD worse. Within a week, I felt more like my old self, waking up and feeling like I actually slept! Soon, I felt so good that I got a new job working with disabled children.
“My recovery hasn’t been perfect. I’ve had to change and adjust medications a couple of times when my fatigue returned. My doctor explained that you have to stay on top of PLMD—it’s not something you treat once and forget about.
“I’ve become an advocate for myself and others with PLMD. I joined a Facebook support group and give others the advice and ear I wish I’d had. Today I’m thriving. I feel like I’m back to being my best self!”