Living with a Functional Movement Disorder
Two and a half years ago my knees began giving out for no reason. Out of nowhere! Then, shortly thereafter, the uncontrollable shaking and lack of voice control and regulation began. Armed with no information or knowledge, I was diagnosed with a Functional Movement Disorder (FMD).
Despite it being over two years since my diagnosis, I still feel as if I know nothing. It’s an incredibly hard disorder to understand, have, and treat, as there is no explanation and there is no cure.
In the past, FMD’s were known as “psychogenic” disorders, however, in recent years the previous term has been deemed antiquated and derogatory. Many patients and doctors felt the term also overemphasized the mind-body separation, when, in fact, they are very much connected.
Functional Movement Disorders are becoming more and more common. You will learn later on that the disorder is likely caused or brought on by a significant, traumatic event. Given that there is so much shared trauma in the world today, it makes perfect sense that more are being afflicted with an FMD.
With that said, the next time you witness an individual experiencing shaking, weakness, and loss of physical control, don’t just assume it’s Parkinson’s Disease. There’s a fair chance it’s due to a Functional Movement Disorder.
After my diagnosis, I learned that the disorder occurs because the brain essentially has crossed signals, leading the synapses to fire in the wrong direction. In this case, there is nothing wrong with the brain’s hardware; the problem lies in its software. In other words, the various areas of the brain are not communicating with each other as they should.
Amazingly, there is absolutely no physiological explanation for when and why Functional Movement Disorders occur. Scans, exams, tests all indicate I am a healthy individual with no brain dysfunction and no major health issues. Just like it’s easier to replace hardware than repair software, it’s easier to diagnose and treat other movement disorders as compared to an FMD.
For example, an individual with an FMD will intend to walk to the refrigerator, but on their way to the refrigerator door, will experience weakness and shaking. This shaking, also known as dyskinesia, can strike any time, and for me, generally occurs at inopportune moments. Due to this disorder, a person with an FMD will sometimes struggle to complete basic tasks. The FMD brain knows you intend to walk to the refrigerator, but the message gets scrambled anyway, and the brain is unable to compute. As said above, the software is broken.
Prior to diagnosis, while the patient awaits their results; tests are run, a multitude of questions are asked, and doctors debate back and forth. Generally, once the neurologist makes the diagnosis, they will immediately or very quickly direct the patient to Psychiatry.
In my experience, no one doctor was wanting or willing to take on me as a patient because they simply don’t understand the disorder (and therefore, feel inadequate and uncomfortable treating it.)
Due to the lack of any physiological explanation for the disorder, the patient is told the problem lies within them and is psychological. The patient is then ping-ponged back and forth between specialties, doctors, and offices. This ping-ponging is partly due to an ongoing debate as to whether FMD treatment falls within the Neurological or Psychiatric disciplines. No one knows, which leaves the patient in a lurch, and without direction.
If the patient decides they would like to take the psychological route, and begins seeing a psychiatrist and therapist for treatment of the disorder, they are doing themselves a huge favor. This is because most FMD patients also have underlying, untreated psychiatric issues, like anxiety and PTSD. The psychiatrist or therapist will attempt to uncover and help to heal the trauma that exists within the individual. In other words, the goal is to rewire the brain, for it to process past traumas differently. Sometimes treating the underlying psychiatric issues will lessen the effects of the disorder, and sometimes it won’t.
After years of searching for answers, seeing several neurologists and psychiatrists, only one thing can be agreed upon: no one knows why it happens. Unlike Parkinson’s and Alzheimer’s, a person with an FMD will have “normal” results from an MRI scan. The inconclusive results, not knowing, and lack of direction is generally the most frustrating aspects of the disorder for a person with an FMD.
Due to subpar care, many FMD patients will have a difficult time understanding their disorder. This leads to many FMD patients feeling very alone in their thoughts. They know very few will listen, and even fewer will understand.
If you encounter an individual with a Functional Movement Disorder, offer them support and understanding. They need it.
