Making Sense of Functional Neurological Disorders
How to help yourself (and your doctor) when your symptoms don’t make sense.
Posted July 20, 2021 | Reviewed by Abigail Fagan
- Functional Neurological Disorder (FND) involves neurological symptoms that have no clear medical explanation.
- Basic education about FND can provide clarity for patients and help to reduce frustration, shame, and guilt.
- Clinicians can help patients unlearn harmful connections between triggers and symptoms.
If you are struggling with neurological symptoms that are hard to explain—stroke-like symptoms, tremors, loss of vision, blackouts, or non-epileptic seizures—there is a good chance your health care provider is also struggling with how to help. For some patients, this perplexing constellation of seemingly unrelated symptoms are manifestations of a functional neurological disorder (FND). Unfortunately, there is a lack of awareness surrounding FND, causing challenges for both patient and provider. When it comes to finding help, a good place to start is defining what it means to have an FND.
Functional neurological disorders have a long and varied history. (You can learn a bit about this history in my recent post on functional neurological disorders.) One confusing aspect is that other terms are still in use to describe them; these include conversion disorder, somatic symptom and related disorders (DSM-5), and dissociative disorder (ICD-10). However, the ICD-11 is now using "functional neurological disorder" as a synonym for "dissociative neurological symptom disorder" as the most accurate term to describe a broad and varied group of disruptive symptoms.
Medical terminology has strengths and weaknesses. For starters, the word “functional” in the term “functional neurological disorder” is not clearly understood by patients. If a person has "functional dyspepsia," they are experiencing an upset stomach. From a medical perspective, however, there is nothing physically wrong; the stomach is functioning properly, despite the pain and distress that persist. To denote this aspect, the word “functional” is added.
When we combine the words “functional” and “neurological disorder,” many patients focus their attention on the last two words: “neurological disorder.” They assume that something is physically wrong with their nervous system—something that can be directly treated. But to health providers, the word “functional” is the most meaningful part of the diagnosis. Indeed, an FND patient has neurological symptoms—but no physical basis exists to explain them. Therein lies the challenge: because everything is functioning appropriately, oftentimes the physician is not sure what to treat, let alone how to explain the presence of the symptoms to the patient.
Clearing Up the Confusion about FND
In my conversations with patients with FND, I always spend time discussing what their diagnosis means—and what it doesn’t. Many of these patients have been hurt and confused by comments made by physicians. They feel that, at best, their symptoms are dismissed, and at worst, regarded as faked outright.
I often begin my FND education by explaining that FND symptoms are actually quite common. The problem is that we often do not recognize them for what they are, or patients have not had them long enough to interfere with their lives and seek help.
More than a few times when I was a teenager, I pushed my father’s calm, kind disposition to its limits. I can still recall him looking at me with intense frustration and simmering anger after crashing our family Jeep, yet again. What’s more—I can remember noticing one of his eyelids twitching uncontrollably. My poor father may have been experiencing a functional neurological disorder symptom right in front of me! (Something I wisely avoided pointing out.)
Now—let's say I had pointed it out, sending my father off to a neurologist seeking answers about his eye twitch symptom. What do you suppose the neurologist would find?
Not surprisingly, there would be no organic basis to explain his neurological symptom. Yet, the fact that he had had this worrisome symptom could not be denied.
Most likely, everyone reading this post has experienced something like this while under significant stress. Directly following a near-miss car accident, you may find your muscles twitching uncontrollably and accept this symptom as stress induced.
Unlearning Harmful Connections in the Mind
Most FND patients struggle to identify one particular stressor or emotional conflict to explain their symptoms. It is precisely this frustration that needs to be addressed so that patients do not end up with more guilt, shame, and self-blame for the struggle they experience.
Most physicians do ask the standard question, “Is there anything going on in your life right now that you find stressful?” Patients will often reply that their life has normal challenges and stressors, but nothing unusual. After all, parenting, marriage, home maintenance, work, and finance stress everyone at times. What triggers the leap from what one would consider “normal stress” to a sudden onset of FND symptoms?
It doesn’t make sense.
What helps me explain symptoms to patients is to illustrate how their particular FND symptoms are being triggered at very the moment we are talking together. Contracted muscles, speech or vision changes, muscle spasms, and paralysis can be induced (and no, it does not require hypnosis)!
Referencing what's known as Relational Frame Theory, I explain to patients that words and ideas can become linked in our minds. Yet, many of these links are not very helpful. For example, you probably link together the words “kidney stone” and “pain.” An obvious connection, yes, but this connection is not helpful if you are the one passing kidney stones. You will assume that passing kidney stones needs to be painful when it, in fact, does not.
We start by identifying the specific words, sounds, smells, images, or sensations that trigger FND symptoms. I then introduce a simple idea: connections have been made in the person’s brain between sensory input and their symptoms. When we go on to examine the triggers, what we usually see is that there is no obvious or logical connection between the trigger and the symptom. Why would the sound of a bird chirping trigger sudden speech or motor changes? In many cases, just one word or sound can lead to a seizure or a painful muscle contraction.
Undoubtedly, the link is there, but the connection is not obvious.
The seemingly random nature of these connections adds to the mystery, confusion, and ultimately, the stress that a patient experiences.
The good news? What the mind connects, it can disconnect. If we were to map out the links the brain makes between words, emotions, sensations, and ideas, it would look like a massive, sticky spider web. It is within this web of connection that—when viewed from a new perspective—new connections can be formed; connections that do not lead to symptoms of FND.
If you are struggling with FND, know that you are not "crazy." There is hope to be found and help available. Begin by having compassion for yourself and your mind that has made some unhelpful connections. Anything the brain can learn, it can unlearn. Help is available.