Friday, 13 April 2018

13th April - FND Awareness Day 2018 - "My Story"



In layman’s terms FND is an umbral term for different neurologically based symptoms and they occur when the hardware (body) works but the software (brain) does’t. Your brain is continually sending out messages, such as when you walk its telling your legs to move, with FND those messages don’t get though properly so you can have an unbalanced gait or lose feeling in your legs completely.

"Little is known or understood about this disorder" - FND Hope


FND is unique to each person, some people may just have one or two symptoms and other people, like myself can be affected in many different ways.

FND is different to other disorders such as Conversation Disorder.

I've had FND for about 4 years now. It simply started with fatigue, vision problems and loosing my balance, falling over at times, absences and muscle twitches and spasms but I just put it down to being overworked at University. Then one day out the blue I went into a lengthy full-blown tonic clonic seizure in which I stopped breathing and had a tube put down my treat to keep my airway open. From then on seizures became a daily occurrence and I was told that they was non-epileptic in nature.

Because I have numerous symptoms I personally prefer to use the term FND and now, having a specialist neurologist (which took 4 years to get) agrees with this.

FACT: An FND diagnosis should not be made from negative test results. Positive signs such as the Hoover sign for weakness and balance issues which improve with distraction are some examples. - FND Hope

I saw numerous neurologists and neuropsychologists but non where able to help much and unfortunately I didn't live in an area where I could access he right care. After a battle and long wait I'm now finally under a brilliant Professor who has actually written a lot of information about FND.

FND affects me 24/7/365, literally. Like with most chronic illnesses I get good days and bad days and days where it's a mix of them both, I can start off having a good day then my spasms or seizures start and I end up finishing on a bad day. FND is a highly complex and unpredictable illness. Some days I can function fine, other days I am confined to my bed, the house our the sofa. I only leave the house for essential like appointments and only then do I go where I'm with familiar people who know me.

FACT: FND can be as debilitating as other neurological illnesses such as Parkinson's and MS. - FND Hope


I'm well know in A&E unfortunately and because of how misunderstood FND is I don't always receive the best care from professionals, including my GP. Often clinicians don't see FND as an actual diagnosis, but as a set of medically unexplained symptoms because organic illnesses have all been ruled out, such as epilepsy, MS etc. "The most common misconception is that patients are in control of some or all of their symptoms." - FND Hope

As well as FND I also have M.E. (Myalgic Encephalopathy) and joint hypermobility (I have other illnesses but these are my main three) and they all interlink with one another, for example all three illnesses cause chronic pain and fatigue.

Because it’s the brain that’s malfunctioning FND affects me in many ways.

Like I've just mentioned I suffer from daily seizures - absence seizures which are brief losses of consciousness; myoclonic seizures which are involuntary jerks, usually in my right upper body, but sometimes I get them in my legs or in my whole body and tonic-clonic seizures which are unconscious convulsions which can last anywhere from a few minutes to sometimes over an hour. A complication for me is that I have Joint Hypermobility Syndrome (possibly a condition called Ehlers-Danlos Syndrome which I'm in the process of being assessed for) so when I have my myoclonic and tonic-clonic seizures my joints can sublux (become loose) or dislocate which is very painful. There are different triggers for my seizures such as tiredness, pain (so dislocating my joints doesn't help), stress and over sensory stimulation, such as being in noisy places - all things which make it harder for my brain to function as normal. I get very anxious about having seizures which in itself can at times trigger me to have a seizure so it's a vicious cycle. Nowadays I can usually tell (thought not always) when I'm going to have a seizure, or people like my dad or carers can tell when I'm going to have one and can get me somewhere safe, but not always, it just depending on timing, sometimes a pre seizure aura gives enough time to get me somewhere safe like the sofa, other times my seizures can come on very suddenly.  I've lost count how many injuries I've had from my seizures to name a few incidents I've had numerous falls, head injuries, scalds (I once had a seizure holding a freshly boiled kettle a few years ago), and cuts (I had a seizure holding a plate in my hand and went from standing to the ground and cut my hand on the broken shards) and broken bones.

I have different symptoms in my lower body such as pins and needles, itching and painful spasming in my muscles as well as total loss of feeling (functional paralysis) which can last from a few minutes to several hours. My gait is also off-balance which leads to regular falls. As a way of coping I try to make light of my 'wanky walk' but I can be really frustrating as each step takes a lot of effort. I use mobility aids including crutches or my wheelchair depending on my level of mobility and how well behaved my legs are behaving.

I also have weakness in my whole body which can be very frustrating and scary at times and some days it's worse than other days. So for example my arms can become heavy and floppy and I lose all my strength in them. As well as this I can also get a tremor which of me is usually in my legs when I trying to walk or in my hands and arms when I'm trying to complete tasks like carry a cup.

These issues with mobility and movement fall under the subcategory called Functional Movement Disorder.

Chronic pain is another big feature for me and happens when signals of pain remain active in the nervous system for weeks, months, or even years and unfortunately FND related pain does not always respond to medication. Sometimes my pain is just there in the background, other times I double bent in agony.

Bladder and bowel problems. I have incontinence because my brain does’t tell me that I need to go for a wee until its too late with is quite embarrassing and affects my day and night too because I'm needing to make urgent dashes to the loo and because of my mobility problems I can't always make it in time so I wear incontince pads which is hard to accept at the age of 24. I also have bowel issues again because my gut is slow and is complicated by my hypermobility disorder.

'Brain fog' and cognitive difficulties are another feature I have. I get very forgetful and confused for example  recently I used a plastic plate until the microwave grill - oops! Some of my cognitive symptoms can include confusion, forgetfulness, fatigue, difficulty with thinking, focus and completing tasks and poor concentration. Keeping a blog is difficult as a result so I schedule posts and type ahead of time and add on here and there until it's completed and ready to be published. 


Memory loss is more than usual moments of forgetfulness for example I lose the name of common words so you might find me saying "that thing that you sit at to eat" as I've forgotten the word 'table'. 

My short term memory is also pretty bad. I often forget something that either I said or was said to me five minutes ago. My Dad or step-mum will go out and tell me where they are going only to receive a text or phone call from me asking them where they are. It can be quite scary at times.

Part of the cognitive dysfunction is difficulty with my speech. At times it can be slurred so I can sound and be mistaken for being drunk, especially paired with a headache or migraine. I also lose the words for common objects, for example "table" so instead I'll say "that wooden thing you sit at to eat".

I have Chronic Daily Headaches and have frequent migraines including Hemiplegic Migraines.

I'm very hypersensitive to things like light, sound and smell. I wear tinted lenses which make things easier but sometimes when I'm having a bad day I have to lay in bed in the dark with an eye mask and ear defenders on because I can't tolerate any sensory input.

My vision is also affected which comes from muscle and nerves problems and includes blurred and double vision which is mostly corrected with glasses and eye exercises. I also have limited peripheral vision.

Despite chronic fatigue and at times hypersomnia which is excessive sleeping I also struggle with insomnia which in itself exesserbates other systems such as cognitive function, pain tolerance, low mood etc.

Currently there are no NICE guidelines on how to treat and care for patients with FND and very few effective treatment plans exist; as well as this much more funding and research is needed to understand the condition. In the UK there are very few specialist and services that exist for patients with FND.

As well as battling the illness is battling for care. It took me 4 years to get to see the right neurologist and it's a bit of a postcode lottery in terms of where you live. Far too often access to treatment, both in terms of health and social care is a fight and sometimes it feels a losing battle. I have to self-fund my carers despite concerns raised by those involved in my care stating I need more care. My home, though it is a place to live can be a challenge at time. The bathroom is hard to access as I cannot get my legs over the bath and more grab rails are needed. I also struggle with the stairs and have had numerous falls and my wheelchair is difficult to manoeuvre around in. On my bad days I am bed bound, though I try my hardest to spend my days on the sofa and leave my bedroom for resting and sleeping to help with sleep hygiene. Sometimes my house/bedroom feels more like a prison than a home. I'd love to have a place of my own but that would require adaptations, wheelchair access and extra care and I doubt that locally that would would be near impossible to get. Even my wheelchair isn't perfect, though it does the job. I have in the past had pressure sores from being stuck in bed which are horrible and very painful.


One of the biggest challenges is the poor attitudes and lack of understanding around FND. My GP fails to see FND or M.E. are a real illness, but instead just simply a set of 'medically unexplained symptoms' despite being under a neurologist for the illness. And some clinicians don't even believe me to be ill at all. It's these attitudes that lead to poor and misunderstood care, or even the delivery of care at all. I just hope that when I get the official diagnosis of Hypermobility Spectrum Disorder/Ehlers-Danlos Syndrome that things may improve and my symptoms may be taken more seriously.

"Lack of understanding the condition has negatively influenced treatment and care. Researchers, money, and volunteers are greatly needed." - FND Hope

I'm on a mix of different treatments including medication and physiotherapy. I'm trying to push for hydrotherapy but unfortuanatly our NHS Trust doesn't have this facility. I'm also waiting on funding for a specialist rehabilitation unit. I also do physio exercises at home and have been under the physiotherapy team at the hospital and seen occupational therapists too. Like I mentioned above, I don't like in the best area where I can access all the therapies that could help me manage my symptoms, but now I'm under my Professor in London we are slowly getting there and trying to get treatment, like the rehabilitation unit. It really is just a postcode lottery depending on where you like. When I saw Professor Edwards last year he want's to rule out epilepsy for sure so I'm waiting to have a video telemetry test done because some of the presentation in my seizures don't quite match typical non-epileptic seizures, for example having my eyes open during seizures and my loss of awareness of what's going on around me.

I feel very lucky to now be under the care of Professor Edwards and I'm hoping with time and getting the right treatment that my symptoms will become more manageable, though I know that I will most likely always be there and I can live my life not limited by my symptoms but to be able to live with my symptoms and hopefully one day return to education and manage some form of employment; just maybe not quite in the way I had it planned out 6 or 7 years ago. It is my dream to one day train as a Child Psychotherapist. I just need to be patient and take one day at a time.

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