Seizures, numbness, migraines, shortness of breath, muscle spasms – these are just a few possible symptoms of Functional Neurological Disorder (FND), a complex and often misunderstood condition. FND occurs when the brain cannot properly send and receive signals, causing a range of physical symptoms. The National Health Service states, “In someone who has FND, there’s no damage to the hardware, or structure, of the brain. It’s the software, or program running on the computer, that isn’t working properly.” In other words, there is a problem with the functioning of the nervous system as opposed to a structural problem. FND symptoms are a physical response to an emotional stressor. Symptoms are like a light shining down onto a map. We can’t see the map - ie we don’t have a sense of direction or understand what symptoms or issues to address - without the light. Originally the diagnosis of FND was considered a rule out disorder, one only given after many tests and scans had been done to rule out other disorders. Fortunately since the mid 2000’s this rare condition has been better studied and physicians have begun to identify patterns in clinical presentation and now FND is considered a rule in disorder. FND is at the intersection of neurology and psychiatry.
Functional Neurological Disorders (FND) significantly impacts the quality of life, affecting daily activities and mental health due to its unpredictable symptoms. To some, a formal diagnosis of FND may come as a relief because you FINALLY have a name for what you’re experiencing. To others, it may cause more confusion and concern. Questions like, “What is FND? What does this diagnosis mean? Where do I go from here?” may come up. It's important to understand that even if you have questions about FND, your symptoms are real. Say it with me again – your symptoms are real. Now, embrace your inner detective and let's dive deep into the world of FND, where understanding your symptoms is the first clue to unlocking a better quality of life.
With Functional Neurological Disorder (FND), closely examining symptoms and patterns is crucial so that your medical team – which includes doctors, physical therapists, occupational therapists and clinical therapists– can tailor assessments, interventions, and treatment plans specifically for you. At this point, you probably have picked up on the fact that symptoms are at the crux of FND management. The aim of FND therapy is to retrain the brain to execute neurotypical movements and significantly reduce unwanted symptoms. But first, we need to know what causes the symptoms.
It’s helpful to write down all of your symptoms and if possible, review with a trusted family member or friend that knows you well. We’re all human, sometimes we forget things. A trusted friend or loved one might bring new symptoms to your attention that seemed inconsequential at the time. Maybe your eye started twitching at dinner and you chalked it up to a bad night’s sleep the night before, but your loved one gently reminds you it happened last week and the week before that. Look at weeks or months before the onset. Anything goes here – bad migraine, fall, infection, bad drug side effect, someone at work crossed a boundary, song brought you back to a difficult time in your life. This could shed some light onto possible triggers for symptoms. Write it down! Once you have a comprehensive list of symptoms, the investigation begins.
In order to get a full picture of how symptoms present, it is useful to become a detective and investigate the context in which your symptoms present. In other words, what’s going on when I start to have stomach pain, numbness in my leg, or a headache? As a detective, pay close attention to when you start to notice symptoms coming on. This is called the ‘aura’ or ‘warning stage’. What’s an aura? So glad you asked! Let’s look at a generic example, like sneezing. Before you sneeze, you may open your mouth, squint your eyes, and feel like there is pepper in your nose. You feel it coming on. Then, you sneeze. The symptoms you feel BEFORE (i.e., pepper in your nose, open mouth, squinting the eyes) are the ‘aura’. It’s a warning sign.
Notice what sensations you feel BEFORE the symptoms start. Perhaps someone with FND experiences seizures. Pay close attention to how you feel before the seizure: maybe you feel confused, anxious, irritable, and you have a funny feeling. Write this down! Maybe you notice on the drive to work in the morning you always get a headache. But, if you practice the 4-7-8 breathing technique (Learn more about 4-7-8 breathing technique here!) and listen to calm instrumental music, the intensity decreases. The pounding headache morphs into a manageable dull ache. Symptoms can present in different ways, at different times, at various intensities. Document the symptoms you feel in your body. Make sure to write down where you are, what you’re doing, who you’re with, time of day, what has been said, and what thoughts occur.
There are different ways to track symptoms. Typically when tracking symptoms it’s important to find a system that is simple yet effective. For some, tracking symptoms on their phone is easiest. Others may prefer to write it down in a notebook. Folks may prefer to make a voice note on their cell phone and talk about the symptom, when it started, how long it lasted, etc. Here are some other practical ideas to track symptoms using a simple and streamlined method:
Send a text to yourself with the letter ‘t’ everytime a tremor starts in order to track how often it happens throughout the day.
Put sticky notes on the fridge for each symptom. One sticky note reads, “pins and needles.” Another reads, “fatigue.” And third reads, “tremors.” When the symptom starts, write a slash on the sticky note. At the end of the day, count how many times you had a tremor, numbness or pins and needles, etc.
Add an event on your phone calendar and write down how many times a symptom happens each day. At the end of the week, count daily and weekly frequency. Also look for trends! For example, if a client had 6 tremors on Monday, 8 tremors on Tuesday, and 3 tremors on Wednesday, let’s get curious about Wednesday. The tremors decreased on Wednesday so as a FND detective, we want to know why. What was different on Wednesday? Did you get home from a work trip on Wednesday and felt relieved to be home?
Click here to see an awesome symptom tracker in Excel, created by Squishy_pod.
Below is a screen shot of the Excel sheet symptom tracker. Not only does it look at symptom frequency it also has a chart to look at daily mood (excited, happy, relaxed, anxious, etc.) and helpful supports (exercise, water, supplements, socializing, restful sleep, etc.)
There are several apps specifically to tracking FND symptoms, such as MyFND, FlareDown, and FND Aus App.
Don’t be afraid to use a good old pen and paper, too! Get a small notebook, carry it with you, and write down when a symptom starts, the intensity, duration, description of the sensation, where you were, who you were with, and what you were doing when the symptom started.
Once there is a track record of symptoms, you can start to experiment and manipulate your body to see how change impacts the symptom. View this as an exploration. Remember to bring an open mind! This is a data collection through tactile assessments to understand what makes symptoms better or worse. Let’s take a look at facial numbness, a FND symptom. What happens if you softly rub your hand on your cheek in a circular motion. What do you feel? How does this change the numbness, if at all? What sensation does it generate? Then, take your tongue and push it out against your cheek. Do this a few times. How does it feel? Do you feel a different sensation? Does it make the numbness better or worse? Next, rub your tongue on the inside of your cheek a few times in a circular motion. How does it feel? What comes up? If you open your mouth wide to stretch your jaw and then close your mouth, how does your cheek feel? Try scrunching up your mouth and nose on the right side of your face and then on the left side of your face. What comes up? Is the numbness better, worse, or the same? As you experiment with each tactile assessment, ask these follow up questions. The goal is to generate practical actions you can do to relieve symptoms. Use the same tracking approach here. Just as you meticulously tracked symptoms, frequency, and intensity, track what happens during the tactile assessments. What makes it better, what makes it worse, or what makes it stay the same?
It’s common to feel anxious or nervous when you receive a diagnosis of Functional Neurological Disorder. It may feel like the body is out of control. However, there are strategies within your control to understand FND better. Track symptoms to understand what the symptom is, when it occurs, what it feels like, who you’re with, what you’re doing, how long it lasts, and the intensity. Then experiment with tactile assessments to understand what makes the symptom better or worse. The goal is to create a beautiful package of what your specific version of FND looks like, what helps, what hurts, and how you understand your body. This will help a therapist tailor a treatment plan specifically for your needs.
Your symptoms are real. If you’re looking for support managing FND, call The Center for Growth today at 215-922-5683 ext. 100 or self schedule online with one of our skilled clinicians today.
