This Friday is International Functional Neurological Disorder Awareness day.
Why are we raising awareness? It’s quite simple, despite this brain disorder being an extremely common neurological illness, so many still haven’t even heard of it. A lack of knowledge and understanding equals to stigma and a real lack of treatment. This has to stop. FND ruins lives and all too often, patients are diagnosed and sent packing. They’re left to try and live a normal life, dealing with a myriad of symptoms that are very debilitating. That’s why it’s so very important that we work together to stop the stigma and raise the understanding.
I started writing my blog, fndandmecom.wordpress.com ,
because when I was diagnosed in 2013, I was shocked to find out just how common it was and that no one had heard if it. I have been extremely lucky to find various charities and support groups who share my passion in raising awareness of FND. I am thrilled to work with the lovely people at Friends in NEAD. We are now lucky enough to be working alongside the charities, FND Hope UK and FND Action. Together, we aim to raise awareness and understanding of this complex chronic illness.
What is Functional Neurological Disorder?
Good question, the way it has been explained to me, when I attended an FND Rehabilitation in January, is that it’s a malfunction of the amygdala. Which is described as:
Definition and Function of the Amygdala. The amygdala is an almond-shaped section of nervous tissue located in the temporal (side) lobe of the brain. … They are thought to be a part of the limbic system within the brain, which is responsible for emotions, survival instincts, and memory.
I was told that the emotion’s centre of the brain stops functioning correctly. In my case, I now know that this is due to trauma. However, in some cases, patients have been known to develop this malfunction because of a physical injury and sometimes, unfortunately, there is no apparent reason and it just stops working correctly.
In my case, the trauma I had experienced as a young adult had caused my brain to become confused. I never dealt with or spoke about the terrible things that happened. As a result, when my brain felt that it could begin to process the trauma, my FND symptoms began. In the build up to my symptoms starting, there was a range of circumstances that I now know were ‘triggers‘. Triggers are moments that tell my brain that I’m under attack. Hence it goes into fight or flight mode and my symptoms jumo into action.
I am not medically trained and do not claim to be. This information is what I have been taught by medical professionals in my quest to understand my condition.
You can find more information about what FND is at the FND Hope or FND Action websites and also at http://www.neurosymptoms.org
What are the symptoms of FND?
Where do I start? This is again quite tricky as sufferers can have maybe one or two symptoms or all of them. Here’s a list of the symptoms I have experienced over the past 5 years, please forgive me if I miss any out!
1) N.E.A.D- Non Epileptic Attack Disorder. Also known as NES- Non Epileptic Seizures. These are full body convulsions caused by a confusion of signals in the brain. They are VERY REAL and extremely painful. Unfortunately, some uneducated medical staff believe that these are ‘fake’. They are most definitely NOT. You have no control over them and unlike epileptic seizures, most people tend to be awake but unable to respond.
2) Paralysis. I am lucky in the fact that the paralysis I experience is only temporary but some patients, sadly, don’t regain movement. Personally, my paralysis can last anything up to a few hours. Sometimes, it’s just my legs. Other times, it’s my whole body.
3) Chronic pain. This can be neuropathic or just generalised but it’s so relentless.
4) Chronic Fatigue. This isn’t just tiredness. This fatigue is sleeping for 12 hours but still feeling absolutely drained.
5) Memory problems. This again varies from person to person but can be very troublesome when standing in front of a class of 30 children!
6) Functional Tremor. This can be your hands, arms, legs or everything.
7) Body temperature. Sounds trivial but imagine feeling so cold that it feels as if ice is running through your veins. Then an hour later, sweating like a pig for no apparent reason. Trust me, it’s a pickle!
That’s just my experience of living with FND for the past 5 years. Sadly, there are many symptoms and lots of sufferers also have other conditions on top of all this.
I hope that you have found this information useful. Please help me by telling others, especially medical professionals about FND. It’s so important that everyone gets the help and support they need! It is working and help is out there. My readers will know how much my 5 week rehabilitation helped me but I had to wait 5 years to get that help. In that time, I had been surviving, not living. This can’t go on people need the opportunity to get treatment sooner.
Throughout the day tomorrow, Friday 13th April, we will be sharing vlogs, blogs and all sorts. Please help us by sharing, retweeting and using the hashtags: #LetstalkFND #NotFakingIt.
Thank you in advance you lovely lot 😙