FND, system failure, and neuro-rehab: how I cured myself when the medical system couldn't

I've written a lot about the emotional journey I’ve taken as I’ve worked to recover from Functional Neurological Disorder (read more here and here). I haven’t posted nearly as much about exactly what my recovery process itself has entailed.

There are a couple of reasons for this.

Firstly: I am a researcher - gathering information is what I do. Not only that, but I’ve spent the last two years of my life working in not just the field of neuroscience, but actually working with the exact neuroimaging analysis technologies used to make the recent discoveries in FND. So, when I was diagnosed with this disorder my first inclination was to scour the databases and find as much information as I could in order to build a cohesive understanding of what it actually is - I wanted to know what was happening in my brain. It’s natural, then, that when I decided to write about FND this process was the first thing I documented.

Secondly, I didn’t want to make the mistake of giving medical advice without credentials. While I'll maintain that I know a lot about neuroscience, I'm not a doctor and won't create any illusion that I am one.

But as I’ve become more familiar with FND research as well as with a community of people who share the experience of doing their best to live with it, I’ve realized that it might not be such a bad thing to direct others towards the resources I’ve found.

The reality is that the professionals we’d like to think would be directing people towards research-validated treatments and coordinating recovery plans just aren’t doing so.

Scientifically validated treatments exist. Yet, those diagnosed with FND are still being left to fend for themselves, stuck on waiting lists months to years long, or else sent to therapies that just don’t work by doctors still entrenched in the outdated conversion theory of the disorder.

I was stuck in this group - I received an accurate diagnosis and was referred to treatment, but when I looked for practitioners who could actually coordinate my recovery plan there were none to be found any closer than a near-24 hour drive from home. And even if I could make time to see these doctors, their waiting lists stretched on for months to years. I didn’t have that kind of time. I wanted - no, needed - to start working towards recovery immediately. Once you have a glimmer of hope after suffering for so long, it becomes impossible to just sit quietly and do nothing about it.

So, I did what I do best: I researched. I found what there is to find on FND - a relative historical lack of literature, but then a shining, glorious group of studies over just the year prior to my diagnosis which pinpointed the foundation for an understanding of FND’s previously-elusive pathology. I realized I was in quite a serendipitous position. Simultaneously to that research being conducted, I was working with the very same technologies with a not-so-different disease group and building what ended up amounting to an incredibly detailed niche understanding of the exact specific neurological processes which seem to drive FND. Not only that, but the project I’d worked on was actually one which explored the potential of rehabilitation interventions to restore proper functioning of those systems in order to resurrect damaged neurological functions.

I couldn’t believe my luck - it didn’t matter that I had no doctor to coordinate my care. I could do it myself. In fact, I found myself - even as a horrifically ill 23 year old woman, scared out of her mind, no doctorate in hand - being potentially one of the most qualified local people to help someone like me. In any case, I was the most qualified person offering.

From there, I hit the ground running.

The biggest thing that I’d seen in FND research was the mounting evidence for physical therapy as a main pillar of neurological rehabilitation. One of the reasons why FND affects sensorimotor functions so much is that it features significant disruption of connectivity between sensory and motor regions in the brain, as well as between these and other regions. It’s been previously observed in populations who have suffered injuries such as stroke or concussion that practicing movement with the help of a physical therapist can reinforce and even rebuild damaged connections in relevant brain areas so that motor control and sensory integration can be relearned. There is not enough amassed literature on FND to be able to say definitively what changes occur in the brain after rehabilitation, but the only reasonable guess which can be made is that the disrupted sensorimotor network can be restored to proper (or at least significantly improved) functioning through rehabilitation interventions.

So, I sought out a physical therapist who could help me. None in my area were familiar with FND, but I found a clinic that had a sub-specialty in parkinson’s and stroke rehab. These being two things which involve treatment to reinforce healthy brain connectivity between sensory and motor regions, it seemed like the best fit I was likely to find. I started intensive treatment in the early spring of this year - I went multiple times a week, every single week. It was hard work - the physical therapist led me through drills and movement patterns that challenged my brain in ways that managed to surprise me, even after a full two years of illness. I found that when asked to perform movements which involved crossing my body with my arms and legs at the same time, for example, I couldn’t do it. I could only move one limb at a time...at first, anyway. For some strange reason, FND disrupts the ability for the brain to coordinate sensory and motor information across the left and right sides of the body. Practicing movement patterns which require involvement from the left and right hemispheres has an equally strange ability to improve the overall functioning of sensorimotor areas of the brain. Doing this repeatedly over time - hypothetically - should strengthen the sensorimotor network so that it begins to function optimally again. I practiced, practiced, and practiced some more. I did exercises like bird dogs, dead bugs, planks of every kind, pallof presses, various sorts of weighted walking, cycling, elliptical walking, and so many other exercises which forced the left and right sides of my brain to work together to coordinate increasingly complex movements. Finally, movement started coming more easily. And as I made these improvements, I found that my other symptoms improved as well. As bird dogs and dead bugs became easier to complete, my balance improved and my episodes of vertigo calmed. As my time logged on the elliptical ticked upwards, my tolerance for taxing stimuli improved such that bright lights and loud noises no longer caused me to seize. Slowly, I even began to feel less exhausted throughout the day so that my sleep schedule started to look vaguely like a normal human being’s again.

While I went through these steps, I also began to contemplate what else might be driving my symptoms. There is simply too little research to say anything about what role various disorders might play in driving the development or perpetuation of FND - that’s a question that, realistically, might not be answered for years to come. But despite this lack of resources, it seemed idiotic to not try and pay attention and try and figure out what might be true for my own body, at the very least. I’m fairly certain that in my own situation, a smattering of pre-existing conditions created the perfect storm for me to develop FND. I have Tourette Syndrome, which is well known to disrupt normal brain connectivity. TS also comes with a range of co-morbid conditions, such as sleep disorders, autoimmune problems, migraines, and connective tissue disorders. In my own case, I have sleep problems (diagnosed “sleep disorder unspecified"), Celiac Disease, a mild case of hypermobility-type Ehlers Danlos Syndrome, and silent migraines. The combination of potentially fragile brain connectivity, episodes of spreading cortical depression (abnormal neural activity associated with migraine), systemic inflammation, and mildly impaired proprioception (due to ligament laxity from EDS) seems as valid of an explanation as any for why a body might get confused and start to break down.

I did what I could to address these problems, too.

I decided to do all I could to start managing my Tourette Syndrome better. I stopped letting myself feel pressured to suppress tics. I started asking more for what I knew I needed - the ability to move, space to decompress, and a work environment that’s calming and fosters the ability to focus.

I started really paying attention to my sleep. I did my best to get to bed at a decent time. In the afternoon I started turning my screens to night mode to reduce the amount of blue light I was exposed to. I paid careful attention to the way that the things I ate and drank affected me and my ability to get restorative sleep. I also began allowing myself to rest when I needed it - if I am exhausted, I don’t guilt myself into pushing through if I know I can’t. My body is doing its best to heal, and the least I can do is give it half an hour of rest if I know I need it partway through the day.

I changed my eating habits. I added more healthy foods - especially vegetables. I don’t believe in strict dietary rules, but I do believe in the power of moderation. I started limiting more the amount of sugar I had in a day. I paid attention to which things seemed to trigger inflammation, and started reducing these drastically while also increasing the things which I know help me to feel better and more energized.

I started working on strength outside of physical therapy - in addition to my twice-weekly sessions, I also went to the gym multiple times a week to spend time on the elliptical, and to focus on building strength. Research suggests that one of the biggest things which can help to reduce the effects of EDS on musculoskeletal health is weight-lifting (done with appropriate safety modifications, of course). This works by building muscle which can support joints in areas which are weakened by abnormal laxity in ligaments or other structures. The focused attention on one’s movements which is required to maintain proper form was also an excellent way to supplement the exercises involved in my physical therapy and build up a higher level of body awareness. As the proprioception deficit and sensations of joint instability started to decrease, so did the functional impairment to my motor coordination.

It’s been roughly six months since my diagnosis, but it feels like a lifetime. So much has changed, not least of all my body. I still have residual symptoms from time to time - my journey isn’t quite over - but I’m no longer the person who was unable to walk, speak, or even think properly. I am once again able to do nearly anything I set my mind to as long as I take my time and go at my own pace. After all this time, I’m finally able to say that I am well.

I hope that others are able to benefit from my story...there are so many people who, like me, have no access to physicians who specialize in FND or can coordinate appropriate care. Unlike me, they don’t all have the benefit of having spent the years immediately preceding their diagnosis studying and working in the neuroscience field. It might be too much to ask, but I carry the hope that my contributions can start to close the gap between the information which exists versus the recovery resources reaching the hands of so many people desperately waiting for a lifeline. I’m going to carry forward thinking that maybe this could be true - after all, I got better after I’d begun to lose all hope that I ever would. I’m going to take that as a sign that anything is possible.