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The Lies My Body Tells Me With Functional Motor Disorder

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The anesthesiologist said, “This is light anesthesia. In 10 minutes after you wake up, you will feel just like you do now.”

I waited years for that “10-minute” feeling. Before I had an endoscopy to determine why food felt stuck after I swallowed, I regularly enjoyed six mile runs. After the medical test, I struggled to get off the couch.

Fear, confusion and unpredictability became uninvited guests. It was like a friend overstaying his welcome or someone who calls up and speaks without taking a breath. How do you move them along and have your own time again?

Local doctors could not explain why my legs felt heavy when I awoke from anesthesia. In the next three months, my ability to walk would come and go unpredictably. I worked for an hour to coax my stomach to accept half a cup of thin puree. When I was 15 pounds below my ideal body weight, I traveled eight hours to see doctors at the Mayo Clinic. Two weeks of testing yielded a diagnosis of functional motor disorder (FMD), which I pretty much dismissed. Because, I regained ability to walk after I returned home, I never received treatment for FMD.

In the next six years, symptoms varied including: weakness, nausea, shortness of breath, increased severity of chronic cough, depression and panic attacks. I was unable to hold a job, clean my house or engage in activities I enjoyed.

Nearly a year ago, I decided there was nothing physically wrong with me. I joined a gym and explained to instructors that there was no medical explanation for symptoms which mimicked a heart attack. I asked that they ignore physical signs and trust me to work through it. Calling attention to symptoms intensified them.

In three months, deliberate movement became fluid movement. I set a goal of running a 5K in two months, then a 10K two months after that. Having completed both, I have learned that I need intense activity to maintain fluidity of movement. My legs still announce their presence as I walk. At times, I have to concentrate on motivating leg muscles to fire until the pattern for walking becomes automatic. However, once I reach the speed of a 10-minute mile, my legs move without conscious effort. I enjoy the flow of movement and allow my mind to meditate and relax.

Until I recently read about functional motor disorder (FMD), I believed my symptoms were related to stress and depression. Yet, even at Mayo Clinic, the psychologist was amazed at my depression score. I felt happy and believed in the best, despite the debilitating symptoms I was experiencing. Reading stories of others who have been diagnosed with FMD confirmed my own experience.

The most significant feeling comes from my body being an unreliable medical reporter. For example, when I am tired, I ask myself questions:

“What has my activity level been in the last few days?”
“Have I allowed time for adequate rest?”
“Has my routine changed?”
“Am I making progress in achieving new goals?”

Only in answering these questions can I know whether to rest or push through. My body “lies” to me and cannot be trusted to give accurate information. If I give in to feeling utterly exhausted when I have no reason to be, nausea and regression knock at my door. If I allow them to visit, I have to use my “big voice” to convince them to leave. In other words, I must keep myself moving ever forward.

Originally published: March 31, 2019
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