What Is FND?

A few months ago, I would not have written this post about FND as I would have thought people would judge and misunderstand. However, I thought if I don’t do more to raise awareness of a condition that can be very debilitating, then how will there be more understanding and less stigma? A little knowledge is a dangerous thing. There is a lack of understanding within many health professionals, let alone the general public.

I thought, people would then think I had a mental health illness. But then there is nothing wrong with mental health illnesses. I know many people with them and accept them for who they are. Unfortunately, we live in a challenging and difficult world and currently so many people seem to suffer with them.

FND stands for Functional Neurological Disorder. It is one of several illnesses I have. It is the ‘box’ I fitted into for neurorehabilitation at the Wolfson unit (my last post). I am not sure I would have ‘qualified’ for rehabilitation at that unit under my other illnesses. Though to be honest, I am not sure I have ever fitted into a ‘box’, most of my illnesses are rare!

What IS FND?

FND Hope explains FND: ‘FND is due to a problem with the functioning of the nervous system and thought to be the result of the brain’s inability to send and receive signals properly, rather than disease.’

The best way to understand FND, is that if your body is a computer, your brain is the hardware and signals to your brain are the software. It is the software that is a problem, not the hardware. In theory, this is good as with intense rehabilitation there is the potential to reprogram the software. However, this is not an easy process.

What Causes FND?

Often FND can be caused by a physical injury, trauma or traumatic event. So, for me, it could be many options! People often say that it is amazing that I have stayed sane through what I have been through. It could be spending most of my teenage years in hospital, one and a half years in a neuro centre, the tragic death of my dear brother or the traumatic spiral fracture of my femur in hospital. Or just a combination of everything being too much.

When I was in the Wolfson unit, they used the analogy that your body is a pressure cooker, there is so much that your body can cope with and instead of exploding, (as a pressure cooker would if the pressure got too high) it comes out as FND. Our bodies are amazing things, but we are not invincible! It is like the body’s way of trying to manage.

What Are The Symptoms?

FND symptoms can include: blackouts/fainting, non-epileptic seizures, spasms, tremors/shakes, paralysis, limb weakness, sensory disturbance, vision loss, speech symptoms etc

It can result in sufferers needing to use crutches or a wheelchair and severely impact on their quality of life and independence.

It is said that the level of disability and distress suffered with FND is the same as other neurological conditions such as Parkinson’s disease.

What Can Be Done To Help FND?

On a positive note, I have seen first-hand the impact specialist neurorehabilitation can do to improving FND sufferers’ mobility, quality of life and independence. It is just a matter of finding somewhere that is specialist and understands, as unfortunately there seems to be very few units out there, which is highlighted by a FND sufferer coming to Roehampton (London), from Northern Ireland!

How Does FND Affect Me?

I am lucky that the main way FND affects me is in spasms, and that I don’t suffer with a lot of the other symptoms. One thought was that the pain in my hip/femur was then causing me to go into spasm. Since major corrective surgery to my femur last year and getting a stronger core, from the intensive rehabilitation at the Wolfson unit, these have improved a lot.

A Lack Of Knowledge and Research

Some people wait years for a diagnosis. They get told there is nothing wrong, or it is all in their head- as they don’t know what it is. This can be extremely damaging for patients as they feel like they are not believed and people think they are making it up.

It is not well understood, with more research and developments hopefully in years to come things will improve. Unfortunately, I know there are many illnesses that suffer this stigma/ lack of knowledge, some more than others but include: CRPS, ME, fibromyalgia, EDS to name a few. Although the internet is amazing, it can be very damaging as sometimes people then read one article- usually a negative one- and then think it is true and they understand everything.

I believe time will make a difference, as people become more aware.

Hannah x

You may be interested in reading my post: My Stay At The Wolfson Unit