Tuesday, 10 April 2018

#LetsTalkFND An Explanation of Functional Neurological Disorder for FND Awareness Day

By Alison Hayes

International Functional Neurological Disorder Awareness Day this year is Friday April 13, 2018. You can find more information about this condition on the FND Hope website.

My first symptom was a shiver. I shook, as if cold, in the warmth of my boyfriend’s arms. When he noticed, and held me closer to try to comfort me, I shivered more, shook worse. My whole body shook.

After we broke up, after the repeated suggestions that we get back together, and after his appearing where I didn’t expect him, and him not being in the places I expected him to be, things got worse. One night, in a friend’s room, trying not to think about him, my whole body moved with a sudden flash of motion. Every limb stretched out in the same moment, an abrupt stiffening. Then as suddenly as it happened, it stopped, and my body relaxed a little. What was that? My friend and I looked at one another. I was even more confused than she was. But she was more frightened.

After it happened a few more times and I found myself rocking back and forth for minutes at a time, I went to the ER and was referred to a neurologist. After some discussion, she told me it was all anxiety, gave me some anti-anxiety meds, and told me I’d be fine. I was, for months. I had another round of shivers and shakes five or six months later during midterms.

After I graduated, I traveled a bit. I had an amazing time in Australia, and lived there for eight months or so. I had no shivers or tremors and assumed that whatever it was had passed. When I stayed with friends in the UK for a month on my way home, I started doing a little bit of knuckling down, and looked into a couple of options for graduate school and found an interesting job or two to apply for. Immediately following one of my grad school interviews, I started having those full-bodied shaking episodes again. I was annoyed that they came back, but I wasn’t frightened. I reassured my friends that I would see a doctor after I got home.

Grad school didn’t pan out, but I found a job as a fishery observer on the Gulf of Mexico. I went down for training and started the job. It was pretty awesome! I was living on a shrimp boat for weeks at a time, out to sea with the fish, shrimp, seagulls, and oil rigs. I loved it.

In early December, a friend and I committed to an apartment rental, and I planned to enjoy my time there in between trips to Galveston, Texas and Bon Secour, Alabama. When I got back from my trip in December, I was informed that the program had lost funding, and there would be no more trips. Probably. They were trying to find a way to get a bit more funding, maybe they could work something out. I was to hang in there and they’d call me when they knew something.

Five months later, I started shaking uncontrollably, like an exaggerated shiver. I couldn’t stop shaking. It started on a Friday night. On Monday, when it hadn’t let up, I called a neurologist I had seen previously. The next day I was in the hospital. Three weeks later, I was seeing a movement disorder specialist in NYC, and he diagnosed me with conversion disorder. Since then, the name of the condition has been changed to Functional Neurological Disorder, or FND.

What Is FND?

FND is a neurological condition where emotional stress ends up being expressed physically by the body. We all have this to some extent (examples include sweaty palms or ‘butterflies in the stomach’), but with FND it’s extremely exaggerated with symptoms including urinary incontinence, limb paralysis, pain with no discernible cause, non-epileptic seizures, aphasia (inability to speak), irregular temperature response (putting on a sweater in a warm room, or being sweaty in a tee shirt on a cold winter’s day), and/or cognitive fog. The symptoms are not consistent (most people have slightly different sets of symptoms), and can shift unexpectedly in each person, often but not always in response to changes in stress. More details can be found on www.fndhope.org. FND Hope is a nonprofit designed to empower people with the FND diagnosis, and be a resource for patients, caregivers, and medical professionals to help improve knowledge of FND and find appropriate treatments.

FND was known as conversion disorder when I was first diagnosed, which is generally labeled as a mental health condition, and usually occurs in conjunction with other mental illnesses. When you go back in the history of this condition, you find yourself hearing reference to Freud and hysteria. The term conversion disorder was used by Freud to describe how the condition ‘converts’ emotion into physical symptoms. Further back, a neurologist also referred to a condition he had discovered as ‘conversion disorder’ because the symptoms would ‘convert’ from one physical symptom to another after each symptom was treated.

The reality is that FND is right on the boundary between a mental health condition and a neurological one. The precise definition, cause, and treatment are still debated among professionals.

Evidence suggests that FND is associated with damage to the part of the brain that recognizes conscious decision-making, and that the symptoms occur due to some form of ‘misfire’ that changes emotional responses to physical reactions. For some people with conversion disorder they are strangely disconnected from their emotions, and only have the physical response to indicate emotional upset.

Some people use the terms FND and conversion disorder interchangeably, while some argue that FND is the umbrella term, and conversion disorder is a specific type of FND. In my case the psychological definition (conversion disorder) is a very good fit to my neurological symptoms. Many of my doctors still refer to my condition as conversion disorder, and my symptoms as conversion symptoms.

Symptoms

In my case, as I mentioned above, my visible symptoms are primarily movements—this type of movement is called myoclonus, or myoclonic jerks. Many people have experienced myoclonic jerks in their lives. Do you know that moment in time when you’re lying in bed, and nearly asleep, when suddenly you feel like you’re falling? The movement to catch yourself, in that moment, is a myoclonic jerk. It’s abrupt, violent, and startling. That type of movement defined my life for years.

While dealing with these unexpected movements, I also was dealing with severe urinary urgency and loss of bladder control. If I sat down to watch a movie with a friend, I would need to pause for a bathroom break at least twice in the span of the movie. Despite all these rushes to the bathroom, I would find that I had wet myself every few times I went. I have since learned that urinary issues are one of the most common side effects of FND.

Another really strange thing with FND is that in some cases (including mine), the patient is the person least concerned over the symptoms. The symptoms are an annoyance, or a bother, but not appropriately concerning. Many patients, including me, go to the doctor at the insistence of loved ones, because they (the loved ones) are freaked out and worried about it. This emotional detachment is sometimes referred to as ‘la belle indifference’ and appears to be due to the subconscious knowledge that these symptoms are the body expressing emotions, not a sign of a life-threatening condition. This happens in roughly one third of cases.

FND symptoms often only occur on occasion, with periods of seeming fine in between. There are also cases where the symptoms occur constantly in one particular part of the body, such as paralysis of a limb. In many cases, it’s a combination of effects. For example, I would occasionally have movement symptoms (most often when under stress) but consistently had bladder control issues.

Causes of FND

The precise reason why people get FND is not known. It is not a genetic condition like cystic fibrosis in the sense of having particular genes cause the problem, but there likely is a genetic component. There is a tendency within families to be more or less likely to develop FND, similar to depression and substance abuse issues.

What is known is that a large percentage of FND cases appear to have trauma in some form as part of the cause. In some cases, it’s an emotional trauma (toxic relationship, unexpected death of a loved one, etc), but in others it’s a physical trauma (sudden and severe illness, serious injury in an accident, etc). There is a smaller percentage of people who have symptoms come on without any discernable cause.

It does appear that a large percentage of people with an FND diagnosis had trauma, and in many cases were later triggered by a reminder of the trauma, and then developed conversion symptoms. Doing the research is very challenging, because most doctors who do work with FND have a small pool of FND patients to observe (basically just their patients) and there is always a fair number of people whose doctors have given their condition the label of FND when they might actually have a different condition.

FND Hope is looking for people with the FND diagnosis to share their details on their patient registry. The registry is designed to protect patient privacy and will only be accessible to researchers who are studying FND. If you have FND, or know someone who does, please tell them about the registry and ask them to participate!

Diagnosis

When I was diagnosed in 2003, the diagnosis of conversion disorder required two different doctors to identify the condition. The first, in my case, was a neurologist, who observed my symptoms and had tested enough to know that there was not a recognizable neurological cause for the condition. The second is a psychiatrist, who observes the patient to see if there is a relationship between symptoms and psychological stressors.

This puts a lot of people in an awkward position. To get the diagnosis, they needed experts in two different disciplines, and the two experts needed to communicate with one another simply to confirm the diagnosis. A lot of people went undiagnosed.

Just to make things more complicated the write-up of conversion disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM) focused on differentiating conversion disorder from malingering (pretending to be ill for secondary gain). So during the process of being diagnosed, many patients with FND had their honesty questioned, and many psychologists and psychiatrists today still ask their patients about secondary gains from their condition. A secondary gain is something that makes it psychologically worth the inconvenience of the symptoms. For example, a person addicted to pain meds could claim pain to have the secondary gain of getting their pain meds, or a person desperately in need of affection might fake being sick to get support from others.

Nowadays the only doctor required for an FND diagnosis is a neurologist. This puts the condition firmly in neurological territory and protects those diagnosed to some degree from the social stigma that all people with mental health conditions face.

Treatment

There is no guaranteed treatment for FND. About one third of cases of FND resolve themselves within a year of diagnosis: the person spontaneously recovers and doesn’t report FND symptoms again. For the rest of us, a regimen of antidepressants and talk therapy is strongly recommended.

There is now also a treatment program at several hospitals in the US and the UK. This involves intensive programs for physical therapy, occupational therapy, and sometimes additional supports such as on-staff psychological supports, speech therapy, or other therapies as appropriate for symptoms.

These programs last between one and three weeks, and while there are some inpatient programs (generally built around a single work week), most are outpatient, and can last longer periods of time. The antidepressants and this specialized treatment program are the only things consistently proven to work.

When I was diagnosed, these programs were much rarer (if they existed at all) and so I did not learn of them or participate. I did learn about, and participate in, the MORE (motor reprogramming) program in Louisville, Kentucky in 2016, and it did greatly improve my symptoms. Initially, I took antidepressants, got psychological counseling, and saw various specialists to help me gain control over my symptoms. My symptoms have never completely gone away, and there is no reason to believe they will, but I have improved dramatically from each time my symptoms grew severe.

Recovery Process

Many patients, including me, have a large sense of relief when they finally receive a diagnosis. I remember my symptoms immediately went down a bit after I was told that I had conversion disorder, even though there wasn’t a promising treatment offered. Just being able to name it was a huge relief.

Seeing a psychologist was the next treatment recommended to me. Since trauma tends to be a trigger for many people, it makes sense to see a professional that can help identify and cope with the trauma. For me, each time we dug through my life story and identified another big stressor and developed coping strategies for it, I felt better and experienced a decrease or shift in symptoms within a few days of that new discovery.

As I improved, I sought out specialists in other fields who could help my recovery process. I went through bladder retraining, physical therapy, biofeedback, and other programs that gave me some degree of relief or increased control.

The strangest thing with FND is that the symptoms are not consistent. Many patients, myself included, find that over time we develop new and different symptoms! I have found that a lot of them align with increases in life stress, but in some cases I have not been able to identify a trigger for this change.

When I first had symptoms, they were either my entire body, or centered around the trunk of my body. Over time, I started having movements occur in individual limbs and occasionally smaller areas of the body. I spent years slamming forward but never hitting anything: I’d always stop right before the surface. Then one day, I slammed my head into a table, and from then on I could not trust that my body wouldn’t hit things.

I spent years joking about my application to the Ministry of Silly Walks (gotta love Monty Python!) as my legs did all kinds of things instead of walking me straight ahead. After my week in Louisville I had much more control over my movement symptoms but started to experience sensation-related symptoms. I know have a little section of my back that will feel like it’s asleep every once in a while.

I now have pain, numbness, or tingling occur without a discernable cause, usually in different parts of my body each time. My bladder control decreased dramatically, so I am back to seeing my pelvic floor physical therapy.

I also now have migraines on occasion, something I didn’t consider in the past. I am still very happy I participated in the MORE program though, as I can now climb stairs without a second thought (I had a couple years where I needed somebody with me whenever I used stairs), and can have days at a time with no visible symptoms!

These shifts are actually a positive sign, as they indicate that the initial physical habits the body developed now have more resistance, so they symptoms are trying to come out through the path of least resistance. However, these shifts after incredibly annoying as anything I had found to help me adapt to my symptoms needed to be completely rethought after a symptom shift, and a new and different coping mechanism for new and different symptoms must be created.

Outlook

For a percentage of people who get this diagnosis, their symptoms do resolve themselves, and after a short period of time (generally weeks to months) they spontaneously lose their symptoms and go on with their lives, symptom free.

For another percentage, FND is simply a misdiagnosis on their journey to determining what their true condition is. With no testing to confirm the diagnosis, and few ways to prove some of the alternative diagnoses, it can be a difficult process.

I am in the group of people whose symptoms simply did not resolve. Having had this condition for over fourteen years, I am pretty much resigned that it will be something I live with the rest of my life. On the bright side, it is not a deadly condition, and it is not progressive (it is not guaranteed to get worse over time). My goal is to manage my life to have minimal stress, manage the stress I have as well as possible, and to continue to try to improve my quality of life! By doing these things, I might never work full time, but I can have a good and fulfilling life.

Conclusion

FND is an unusual condition that is often misdiagnosed or wrongly diagnosed. There are some experts out there, but even the symptoms of FND span several disciplines. Many people do not get diagnosed in mild cases, as they don’t worry about it, and in some cases that works out just fine. It can co-occur with many mental or physical health conditions, making it hard to pin down.

Many people with the FND diagnosis are at some point accused of faking it or making it up. Social Security Disability Insurance (SSDI) and most support programs have difficulty making determinations for an FND patient because at times we seem able-bodied, and at times we undeniably need help, and we often switch between those two extremes in a matter of minutes.

FND awareness day this year is Friday April 13, and I request that all of you do something to help people learn about FND. Please share this article, or explore the FND Hope website (www.fndhope.org), or simply make a post on social media recognizing the condition. You might help somebody finally find their diagnosis, or help others be a bit more understanding.

Thank you for your time and attention, and I hope you have a wonderful FND Awareness day on Friday!

About the Author

Alison Hayes was diagnosed with conversion disorder (now known as Functional Neurological Disorder) in 2003. She has always viewed herself as an explorer and a person on a mission to improve her life through learning and adventures. She has maintained that explorer’s mindset, and does her best to make her life journey the very best it can be. Her most recent project is the website Thriving While Disabled which contains posts about improving quality of life and state of mind through planning ahead and taking everything one step at a time.

 

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