11 of the Worst Symptoms I Battle With Functional Neurological Disorder
April is all about raising awareness for functional neurological disorder (FND) and I wanted to do something particularly special after being inspired by FND Hope: I want to share my story with the world. I haven’t talked openly about my struggle with FND, but I think it’s about time I did because I have finally come to terms with it, and I am learning how to live with it.
Functional neurological disorder is basically where the brain sends the wrong signals to the rest of the body, resulting in an “out of the ordinary” response to both internal and external stimuli. It may seem out of the ordinary to everyone else, but it is my everyday experience, and it is perfectly normal to me. I have struggled with this now for nearly six years, starting with mild symptoms like muscle fatigue, and escalating over the years to more extreme symptoms, such as loss of sight. However, as the symptoms have escalated, my ability to regain some control has also increased, so I am able to handle both my mood and physical behavior during my episodes.
FND is actually very common, but it is not widely heard of. FND is the second most common reason for a neurology outpatient visit following migraine/headache, making up one-sixth of diagnoses. Based on a 2003 study, neurologists in Scotland estimate 5,000 new cases are reported annually. So, why don’t people know about FND? I’m not really sure, to be honest.
FND can be genetic or due to a trauma that reprograms the brain to “survive” which results in these “survival” symptoms. My FND is a result of trauma. I was bullied intensely throughout my childhood for being different, and at the time, I did fear for my survival because I never had a moment to relax and take a breath. I was always on edge trying to anticipate the next move and avoid confrontation.
This became a norm for me, and this soon became my way of life, resulting in FND symptoms at around age 12 or 13. My legs gave out on me after a tendon injury, which lasted seven days maximum, and resulted in me being in a wheelchair for a year. From this moment onward, I experienced intensive testing that all came up negative. I got the temporary diagnosis of reflex dystrophy syndrome (RDS), but a blood test soon proved this was not the case.
My first year of college was a struggle. My legs gave up after the first month and this is when my symptoms started to escalate, and the more severe symptoms entered my life. Up until now, I had only experienced muscle fatigue and leg paralysis as a symptom … so what happened next was terrifying at the time.
I started to experience arm and leg paralysis simultaneously, sometimes escalating to full-body paralysis where I could only move my eyes. I used to cry in these moments, and it would break my family’s heart. My vision deteriorated and I was forced to use a computer for all my work — this is basically a positive feedback loop as this is no good for my eyes, but I have no choice. It wasn’t helped by the fact I still had to endure tests during these episodes to try and find out what was wrong, and this stressed my brain even more.
During Easter, I finally got the diagnosis of FND and I would have to restart the first year again the following school year. From April to July of that year, I experienced my first ever dissociation episode which lasted for three continuous months. I reverted to a childlike state as a defense mechanism as this was a time where I didn’t experience any stress, so my brain was trying to keep me safe by doing this.
When I came round from this episode, I started to experience memory loss and memory fog for the very first time, which is still infuriating to this day, and means I struggle a lot with numbers. I cannot do math at all; I don’t know how to divide, multiply, add or subtract numbers. I don’t know the value of money, what is expensive and what is cheap. I don’t know how dates work, or when my birthday is or how old I am. This makes me feel very unintelligent all the time and I feel I have completely lost my independence. My mum is now my official carer and my appointee and has to make decisions for me as I am deemed not in the right state of mind to make these decisions; this has meant I have had to significantly change my plans for my future.
There is great variety when it comes to FND symptoms and they are usually unique to each patient. The symptoms I experience are as follows:
1. Limb paralysis/muscle paralysis.
This is exactly what it sounds like. I may wake up one morning or experience a particularly stressful event (something as simple as forgetting to do my homework is seen as super stressful), and I can lose feeling and control of my limbs. There have been times when I have literally been trapped in my own body and I can only move my eyes side-to-side; there is nothing more terrifying than not being able to do anything as your friends and family cry with fear. I couldn’t comfort them or reassure them this would go away and, since I am partially sighted, I can’t even look the people I love in the eye.
2. Chronic fatigue.
Because of the way my brain is programmed, I expend more calories and more energy carrying out simple tasks (such as, picking something off the floor) compared to other people. Therefore, it is very easy for me to become extremely tired. After having a long conversation, I am usually physically exhausted and mentally drained; my muscles hurt, and I can barely stay awake.
Sometimes this will happen in the middle of a conversation with someone, and people consider this rude and think I am bored of them … it’s not that, it’s just I am spending a lot of energy and brain power trying to gather my words and form sentences.
3. Chronic pain.
I am always in pain. Walking around, sitting still, talking, eating, exercising — I’m always in pain. It’s not always at a 10, it’s mainly at a four or five, but my muscles are always hurting, my nerves are always firing, my brain is always thinking and I never have any downtime.
4. Visual impairment.
I have been partially sighted for about five years now. It started with faint blur around objects and light double vision. Now, five years later, it has escalated to the point where I see no outlines and only blurs of color; the way I describe my vision to others is like looking into a kaleidoscope, just blobs of colors. I only know what my girlfriend looks like from photographs, I have never seen her in person properly; I haven’t seen any member of my family clearly in years. I haven’t properly read a normal book like a normal person in years, which is a shame because reading used to be on of my favorite things to do.
This is definitely the most random of all my symptoms; I like to describe my brain in these moments as a like the hare on a greyhound track and there are multiple dogs running after it. Sometimes, one gets the lead and gets control of my brain for a while, but soon another catches up and takes controls. This is pretty much a constant symptom, so my state of mind is in a constant state of flux.
6. Memory fog.
This is probably the symptom that bothers me the most in my day-to-day life. My brain is always running as I am always on an adrenaline rush, so I have no downtime and my brain can get very tired. It means I really struggle to hold a conversation for a long time because I expend a lot of brain power and energy trying to form sentences in my head, so it drains me, and I get both physically and mentally tired. This means I struggle to physically and mentally function, which usually results in my muscles being very heavy and weak. Sometimes, I can barely pick up a cup or cutlery, and I struggle to remember simple information and even my own personal memories sometimes. This can get so bad I don’t even recognize my own family or my own home.
7. Sensory overload.
Because of the way my brain works, I find it difficult to focus on more than one task, so I am prone to sensory overload. My brain is always running as I am always on an adrenaline rush, so I can get very tired when trying to interpret multiple stimuli. When I visit my chiropractor, I take a heart rate variability (HRV) test to measure my brain activity in relation to my heart. The main reading we focus on is the power section, which shows how much energy that is supposed to be channelled into growth is actually channelled into my “fight-or-flight” response. An average reading would be about 250. My latest reading was 6500. This usually indicates when I am about to “crash.”
8. “Alice in wonderland syndrome” (AWS).
This is a visual distortion disorder. It is moderately rare and also known as Todd’s syndrome, named after the psychiatrist who first recognized it. It’s where a person experiences a distortion in how they visualize objects, including themselves. I experience episodes where I perceive myself shrinking and the world getting bigger. Sometimes I experience myself growing and the world shrinking (this is usually followed by a blackout as I think I have hit my head on the ceiling). I also experience time distortion where time feels like it is moving faster or slower than usual and all sounds seem loud and echoey. These usually occur after or before a migraine for me.
9. Loss of speech/selective mutism.
This can occur in one of two ways: Either my voice box and vocal cords become paralyzed, and I physically cannot talk. Or, my brain is too tired and overloaded to form sentences, so I choose to be mute. When my vocal cords become paralyzed, it’s like mouthing and trying to talk properly, but there is no sound coming out, the way I function is not changed, it is just that I cannot make a sound. When I choose to be mute it is because my brain is too overloaded to understand what words mean and how to form sentences, so I save my energy and use an assistive communication technology. I use Leeloo which is designed for people with autism, but is perfect for me as it shows pictures along side the words, so if I can’t think of the word I want, I can look at the pictures and that can remind me of the word I am looking for.
10. Loss of hearing.
Because of the way I am wired, I am particularly sensitive to sounds within a certain frequency; sounds such as fire alarms and smoke alarms tend to cause my nerves to overexert themselves and I usually completely lose my hearing temporarily. This can be a pain, but I now have discovered plenty of apps, such as Leeloo to talk for me and a listening app to display what people are saying, that help me function as per usual.
11. Blackouts/non-epileptic fits.
This is definitely the hardest symptom to deal with for both me and my family. These are so random and there is no warning when these will happen; I could be walking into a room and just drop from an upright position onto the floor and either fit or lose consciousness. Sometimes, it can be a loop of a blackout going into a fit into another blackout and so on. Sometimes, I could be sitting at my computer doing my work and just slide off my chair and onto the floor.
It is definitely the most worrying for my family and they always sit by my side and reassure me I am safe to wake up and everything is OK. My mum has recently started playing meditation music whilst I am unconscious, and it seems to minimize the amount of fits I have whilst blacked out. These fits are very violent, and I usually end up hurting myself due to muscle spasms (such as hitting myself in the throat); my family describes them as if I am fighting someone.
Living with FND takes more of a toll on my mental health than my physical health. I have developed generalized anxiety disorder (GAD) and panic disorder as I am always worried about what is going to happen next and I am always thinking of what could cause an attack. Because of this, I am never living in the moment, I am never enjoying myself or not thinking about my disorder.
My life motto is “don’t let my disability define my abilities,” but I definitely limit the opportunities I take up or my future life because of my disorder. One memory that really sticks in my head is when we were having a family holiday to Scotland and we were sitting in a restaurant, and all I was thinking about is how to angle my body and how to sit so I could pass out in the safest way.
My mental health is definitely improving since I have found some devices and such to help me function. Since getting my cane, I have never felt more confident in myself. I have no depth perception, so I would fall over a lot and I would hang onto my parents’ arms and not really branch out or go out by myself. Before getting my cane, I would use echolocation to create maps of places I visit a lot, so I could move around rooms without tripping over things or falling over. I still use this now, but since getting my cane, I feel more at ease and now visit places I don’t have a map of without the fear of falling over or hurting myself.
I find it very difficult to form social bonds and relationships as I scare a lot of people off with the way I react to certain stimuli. I have a very protective state of mind where I try to minimize the misery I cause. In my opinion, one person being miserable is better than five being miserable, so whenever something is bothering me, I usually keep it to myself, which is the worst way to deal with my disorder, but that is the way I am programmed because of my disorder.
FND is one of the most common, but one of the most misunderstood disorders that exist. I have been told by many people, including medical professionals, the pain is all in my head, or I am making this up or that this simply isn’t happen …and it shocks me how many people dismiss something they simply don’t understand. Just because you can’t see my pain, doesn’t mean I’m not in pain. When I got my cane, I was shocked how many people now realized something was actually wrong with me. It’s as if I need to justify my disorder rather than explain it. This disorder needs more representation and I hope what I am doing here is the start of more FND representation worldwide.
Getty image by Koldunov