Why It Took 10 Months to Name My Mental Illness

I’m 34 years old. I have a husband, a dog and a Master’s degree in teaching special and elementary education. I also have Bipolar I disorder. Last February, I had suicidal depression and thoughts of harming myself. I called my therapist, who called my psychiatrist, and I was admitted to the psych ward for the first time in 10 years. The psychiatrist at the hospital rapidly changed my meds. I was soon discharged, but suddenly, something strange started happening.

My legs and feet shook constantly. It exhausted me. I could no longer teach school. The tremors were so debilitating I was unable to drive, use stairs, read or stand up to take a shower. I was dizzy most of the time so I tripped a lot and ran into things. I had to use a walker for awhile. Writing by hand was nearly impossible. Eating and sleeping took great effort. Even speaking was a trying task; my jaw clenched, my temples ached and I had neck spasms. Eventually I started having severe migraines and went to the ER once for treatment. My primary physician was able to help out with the migraines, but the shaking continued. I just couldn’t sit still.

I ended up applying for disability. When I did get out of the house, people would stop me on the street and ask if I had Parkinson’s disease or restless leg syndrome. Those were the least offensive questions from the public. Others asked me if I was anxious, impatient, dancing, had “ants in my pants” or badly needed to urinate.

What I was experiencing was severe dystonia, a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurologic features. But although I knew what was happening, it didn’t seem to have a cause. 

First, my psychiatrist thought I had akathisia, which is stress and restlessness due to antipsychotic medications. She treated me with medication for it with no results. Then I was put on at least 10 different medications for Parkinson’s disorder. All that did was made me fall asleep as early as 5 in the evening. When my psychiatrist recommended a neurologist who performed an MRI, the results came back normal, seemingly to his disappointment. He rudely said, “There’s nothing wrong with you,” as I shook violently in front of him. My therapist was with me every step of the way, but after the MRI I was at the end of my rope and started feeling suicidal again.

My husband and I found a new psychiatrist. He immediately sent me to a different neurologist. The neurologist did a few tests on my reflexes and had me walk across the room. She was very kind when she told me I had psychogenic movement disorder, a somatoform disorder, or a mental illness that causes bodily symptoms with no apparent physical cause. 

After 10 months, my illness finally had a name. My new psychiatrist prescribed me anti-anxiety medication and I started feeling better within the week. I continued therapy and my stress level dropped significantly. But I was lucky.

Psychogenic movement disorder is rare and obviously difficult to diagnose. Some people with the disorder are in wheelchairs. Some never see their symptoms improve. An accurate diagnosis is imperative, but it can take a long time to get there. Never underestimate the value of a second, third or fourth opinion when it comes to your health. You deserve to have answers.