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Functional Neurological Disorder

What is Functional Neurological Disorder and why does it happen?

Functional neurological disorder (FND) describes a problem with how the brain receives and sends information to the rest of the body. It’s often helpful to think of your brain as a computer. 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.

The problems that cause FND are going on in a level of the brain that you cannot control. It includes symptoms like arm and leg weakness and seizures. Other symptoms like fatigue or pain are not directly caused by FND, but are often found alongside it.

FND can happen for a wide range of reasons. There’s often more than one reason, and the reasons can vary hugely from person to person.

Some of the reasons why the brain stops working properly in FND include:

  • the brain trying to get rid of a painful sensation

  • a migraine or other neurological symptom

  • the brain shutting down a part or all of the body in response to a situation it thinks is threatening

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In some people, stressful events in the past or present can be relevant to FND. In others, stress is not relevant.

The risk of developing FND increases if you have another neurological condition.

 Source: NHS Inform Website

Symptoms of FND.

FND can have many symptoms that can vary from person to person. Some people may have few symptoms, and some people may have many. Some examples can include:

  • Functional seizures: A functional seizure (also called a dissociative seizure) is an episode where someone loses either their awareness of, or their ability to interact with, their surroundings. It may look like an epileptic seizure or a faint. A functional seizure can appear as:

    • uncontrolled shaking

    • suddenly going motionless and unresponsive

    • staring without responding to surroundings

Some people are aware that seizures are about to happen, while others experience them without warning.

  • Functional dystonia: Functional dystonia is a type of muscle spasm. It causes a part of the body to become stuck in an unusual position. This can be for a short or a long period of time. Someone with functional dystonia will often present with curled fingers, a clenched hand, or an ankle that turns in.

  • Functional drop attacks: Functional drop attacks are when someone falls to the ground suddenly, without losing consciousness.

  • Functional sensory symptoms: A symptom of FND can be numbness, pins and needles, or a feeling that a limb isn’t part of your body.

  • Functional cognitive symptoms: Problems with your memory or concentration can be a symptom of FND. You might find that you:

    • lose track while doing things (for example being unable to remember why you went into a room)

    • go blank (for example when trying to recall your pin number)

    • lose track during conversations, misplace important things like your keys or phone

    • forget words. 

It’s normal to experience these things occasionally. For someone with functional cognitive symptoms, these things happen so often that they interfere with work and home life.

  • Dissociative symptoms: Dissociative symptoms are common in FND, although there are many other causes. These symptoms can be hard to describe, but are often described as feeling: 

    • that your body is disconnected from you

    • that your body doesn’t belong to you

    • disconnected from the world around you

    • spaced out

    • that you are floating

    • that you are having an out-of-body experience

    • there but not there

    • You may also be able to hear what’s going on around you, but not be able to respond.

There are other symptoms or conditions that are commonly associated with FND. These include:

Source: NHS Inform Website

How does FND affect me?

It's a bit of a long story but basically back in 2008 aged 36 I had a full abdominal hysterectomy for endometriosis which I had suffered from since the age of 10. I had a respiratory arrest in the ward that evening, but I recovered quickly and never really thought anymore of it.

I returned to work after 6 weeks but never really felt well - I was so incredibly tired, my whole body hurt so very much and I knew something was wrong. After months of trying my absolute best to continue in my role as a Matron, I had to go off sick, and was eventually medically retired from nursing. Things deteriorated quickly and I started with drop attacks several times a day, ending up on bed rest for a couple of years, though I don't remember too much about that time - I think my mind has blocked it all out.

Over the years I have had various symptoms but am now in a wheelchair as I can have between 5 and 30 functional seizures a day. These are causing Hypoxia as my breaths can drop to 1 per minute (we call an ambulance if less than 1 breath every 30 seconds). I also have loss of sensation in various parts of my body, functional dystonia, swallowing problems and basically feel like i'm in another world.

Day to day things are difficult but I try my best to be a positive person and try to bring kindness and joy to others. We have had to move into assisted living which was a huge test of our emotional stability, but we are actually enjoying it very much - we've made our apartment very cool and have brought the average age down by around 30 years!

We have learned to adapt to life daily, hour by hour. We can't make plans as they often have to be cancelled, postponed or moved. Friends move forward with their lives and I miss being involved terribly, but I enjoy watching their exploits on social media! I have 5 friends who are all just a phone call or text away and would do anything for us but we just live in our own little bubble really.

 

I have fabulous carers who are a big part of my life. They are with me when Mark is at work, it gives him time away and the carers help me craft, make my journals and give me support during the seizures, calling for assistance as and when needed. I have a happy life most of the time, some days are incredibly difficult and scary, but I try to focus on the positives. I am very lucky compared to so many others with this dreadful disorder.

I hope my blog will give you some inspiration and ideas - happy journalling!

Further help & information

For more information about FND and ways you can help, or get help yourself, check out the sites below:

FND Hope Logo

"FND Hope International is the first and only global charity for people with Functional Neurological Disorder. Our grassroots campaign is changing the FND world and empowering those affected to live their best possible life. We are uniting patients, their families, leading researchers and advocates to pioneer a new standard of care for FND throughout the world." - from FND Hope website

FND Action Logo

"FND Action and its volunteers dedicate their time to supporting people diagnosed. We work with medical professionals, charities and organisations alike, to raise much-needed awareness to help improve accessible treatment. Our advocacy work is leading the way to better awareness and care." - from FND Action website

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