After Years With Functional Neurological Disorder, I Have a New Path Forward

Often, I refer to myself as a person in their 40s with a body of a 75-year-old. Since my 20s, I’ve been in pain and had some form of treatment to remedy it — with only small periods of respite over the past 22 years. It all started when I was working in a nursing home. I was showering someone, and unfortunately, they passed away. I went against the manual handling policy and not knowing they had passed, I tried to catch them to prevent an injury or fall.

My back injury was my first interaction with a multidisciplinary team. I spent six months off work working on my recovery. As a newly married couple, we survived on Weetabix and noodles. I had weekly physical therapy, biweekly hydrotherapy, and a visit with a personal trainer three times a week at a gym. This time, I made good progress and although I was still in pain, I lived a relatively busy life.

It wasn’t long after my youngest son was born that things started going downhill for me physically — with the comical but harrowing experience of dislocating my hip while getting up from the toilet. This event started the endless cycle of doctors trying to explain the “why” behind my medical struggles.

That was in 2008, but I’ve had so many diagnoses over the years that it’s laughable. Muscle strain, muscle spasms, cramping, bursitis, partial dislocations of the hip, ataxia of unknown origin, arthritis in the hips, knees, and back, deferred pain in the stomach, chronic pain, lower back pain, slipped disc, disc bulges, neurological disorders, and many more that I can’t even remember. I have had numerous MRIs, psychological assessments, CT scans, ultrasounds, nerve conduction studies, blood tests, and neurologist appointments. I had radiofrequency ablation (RFA) over three years, installation of a spinal cord stimulator, appointments with social and mental health workers, physical therapy, occupational therapy, massage, and natural therapies. None of these treatments provided sustained absolute relief — nor did they pinpoint and treat all my symptoms. They didn’t produce a holistic treatment plan or extend me any sort of comfort.

I’ve been “unwell” in my current state — not understanding the “why” about my chronic pain, tremors, and functional neurological disorder (FND) for the past seven years. Therefore, I decided that I need to focus on one avenue of treatment to ensure some kind of consistency for my family and me. My logic is that with effective pain management, I can live a somewhat “normal” life, continue working, and mask whatever is going on with my body using my medications. I needed to try many medications and constantly titrate the dose as my body became tolerant. Although my medications provide relief, they have side effects, like brain fog, tiredness, weight gain and dependency. I have also gone through horrendous medication withdrawals full of night terror, night sweats, and fatigue that have taken me months to overcome. It’s been a constant struggle to figure out the medication with the most negligible side effects that will still target my pain effectively.

As my symptoms make me look like I am drunk, I have been ridiculed and have been the butt of numerous jokes. The rumor mill about why my body movements are not “normal” has been rampant. These uncontrolled body movements have caused some family members to stop talking to me because they don’t condone my “drunken behavior.” Some family members believe that I have significant mental health episodes and am not coping at work or in my family life. Although I acknowledge that friendly banter and having a laugh have been therapeutic for me, I refer to my orthostatic tremors and unusual gait as Jar Jar Binks, the character from “Star Wars.” There is a fine line between a friendly joke and a hurtful, unfiltered, uninformed remark.

For at least six years, I had been skirting around a functional neurological diagnosis. FND studies have shown there can be many triggering factors for the onset of FND, like a physical injury, an infectious illness, a mental health episode, a pain flare-up, or a series of migraines. Any of these illnesses can cause someone’s first FND symptoms, and once you have your first episodes, you likely have the condition for life.

Historically, functional neurological disorders were not understood in the clinical and academic worlds. Until recently, this disorder was thought to result from the uncontrolled manifestation of a mental health condition. FND has traditionally been viewed as an entirely psychological disorder — a theory that repressed psychological stress or trauma gets “converted” into a physical symptom. Therefore, FND is referenced in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) as a psychological disorder. In recent years, FND has only started to be recognized as a standalone neurological condition.

Therefore, I have unfortunately needed to be tested, questioned, and uncomfortably labeled as someone with a complex mental health disorder. I would not be ashamed if that were correct. However, treatment is significantly different if you treat unmanaged chronic pain as a mental health condition. To make the problem worse, many of my medications are used for mental health conditions and epilepsy. Thus when presenting to the hospital or a new specialist, I need to explain my triggers and the root cause of FND again and again. I have been using these medications for nearly seven years and constantly need to explain why I am using my medications for alternative reasons. Thankfully, with the realization that FND is a neurological disorder that affects the nervous system, my medication is not questioned as often these days.

The other issue with FND is that symptoms can come and go. This is a relief as I get some much-needed respite from my symptoms. But other times, they come on quickly and without warning, and when they do, I need to tell my story over and over and jump through plenty of hoops before I get the correct treatment.

Currently, I am sitting in a hospital, and it’s day 20 of being here. We have a plan that will get me out of the hospital in the next few weeks, and that plan should stabilize my gait and leave me with less reliance on mobility aids over the next two to three months. I currently do two to three hours of supervised physical therapy per day — from learning to get out of my bed and car safely to strengthening exercises to stabilize my core and legs to extremely simplified brain exercises to teach me to walk again.

In FND, the symptoms become “stuck” in a pattern in the nervous system. That pattern is reflected in altered brain functioning. The result is often uncontrollable movement. Treatment aims to retrain the brain by unlearning dysfunctional movement patterns and relearning more natural movement. One way of thinking about FND is looking at it like a “software problem” on a computer. The “hardware” is not damaged, but there is a problem with the “software,” so the “computer” doesn’t work correctly.

FND scares me sometimes because for some people, FND symptoms don’t go away. This is my sixth episode in seven years, and it has resulted in hospitalization and an extensive rehabilitation program to retrain and rewire my brain. Honestly, I am not looking forward to the eighth hospitalization, so I am searching for an avenue to slow down and reduce my flare-ups. Although I have reduced my pain by 50 percent with my pain specialist, with the addition of the spinal cord stimulator, the reduction in tremors and FND symptoms has mainly been a side effect. This single-method treatment cannot be my “golden ticket,” and I need to focus holistically on more elements of my treatment.

The current plan is to work with a social worker at the hospital, do physical and occupational therapies, develop a treatment plan that will be sustainable in the community, explore whether I need external long-term support, and finally admit to myself that I need to regularly see a neurologist as part of my regular treatment team. I need to realize that people want to help me and that I am my biggest roadblock at times. I have built a career in supporting and caring for others, which is a strong point at home with the family. However, I constantly struggle with asking for and receiving help from those in my support network. With this path forward, this is the start of a new journey for me.