I have written that I suffer from Functional Neurological Disorder – FND before, now I’d like to explain more about what that actually is.
As I explained before in my article; My health issues and how they affect me daily, I suffer from several conditions that can vary in severity. One of these is called; Functional Neurological Disorder – FND, and it is the one that affects me the most.
What is Functional Neurological Disorder?
- weakness and abnormal patterns of movement (e.g. tremor, abnormal posturing of limbs)
- attacks of abnormal movement/change in awareness that resemble epileptic seizures
- sensory problems
- cognitive problems
- visual and speech symptoms
As disabling as Parkinson’s
Symptoms can appear similar to neurological diseases like; Multiple Sclerosis, Parkinson’s and Epilepsy, and can be just as disabling. They are not caused by structural problem of the nervous system, but instead are a problem with the functioning (how it works), of the nervous system.
Sufferers of FND like myself, can lose the ability to control their body like they normally would. The “basic wiring” of the nervous system isn’t broken, but when people with FND try to use it to move, feel or even think, they cannot get it to operate as normal.
It’s not all in your head
The common misconception is that FND is “all in your head.” I have been told this on more than few occasions, when I’ve been in hospital.
FND is not a problem with motivation, and symptoms are not imagined or “put on”. It is a recognised medical condition which now appears in the 11th revision of the World Health Organisation’s – (WHO), International Classification of Diseases (ICD-11).
Even the Department for Work and Pensions – DWP recognises it. Although they still use to use the old and more term of “Conversion Disorder” to describe it.
Treatment and Outlook
There is no known cure for FND. Many suffers can recover from their symptoms or at least, get to a stage were they have some sort of management of them. Treatment is usually made up of a multi skilled team of health professionals who can include
Physiotherapy – carried out by a physiotherapist with specialist training on dealing with neurological conditions and strokes.
Occupational therapy – An Occupational therapist will assess to see what aids can assist the patient to live more independently.
- Medication – Usually a pain management team is involved to asses and prescribe the best form of pain relief for the patient.
- Psychiatry – FND crosses can often be linked to past emotional or physical trauma such as PTSD. A psychiatrist will meet regularly with the patient to check their well-being and offer various treatments such as Cognitive Behavioural Therapy (CBT).
- Care and Family Support – Families of loved one’s are often included in the process as it can be very daunting looking in. It helps them to understand the condition and it’s effects and to maintain a healthy relationship with their loved one. In some cases a patient will need a carer or team of carers to help them with daily tasks.
The outllok for most sufferers is that they get to a stage were they have some or all of their symptoms under control. It can vary widely but many go on to live normal lives.
This condition itself is not known to shorten life expectancy however, secondary conditions stemming from it could do so.
How it affects me
The most obvious way it affects me is that I cannot walk. As such, I’m wheelchair bound. This is because I have no feeling in both my lower legs. Imagine that feeling when you miss a step and it feels like you’re falling through the floor.
That’s what it feels like when I try to stand; like I’m falling through the floor as I can’t feel my foot on the floor.
I suffer from pain in my lower back which radiates down both legs. The best way to describe this pain is like I’m being electrocuted 24/7. Although I am on high strength pain relief I am always in a lot of pain. Just today my back went and I can’t lift anything of real weigh.
The strength in my arms is something that really varies. I can be well enough to propell myself along a short distance one day. The next I could be struggling to pick up a fork. It is the most terrifying thing when your hands and arms don’t do what you want them too. This is ther symptom that debilitates me completely. I can’t wash myself, wheel myelf, cook, clean or have my children. It’s soul destroying.
Many of you won’t know that Irritable Bowel Syndrome – (IBS) is in-fact under the FND umbrella. This is because although your bowel has symptoms that mimic inflammation like Crohns disease, there is actually no physical cause. Therefore, it;s functional.
I suffer from IBS and Crohns so deciphering which is which can be difficult. The main thing I must do is avoid certain foods and eat healthily. If my crohns flares up, I often end up in hospital requiring some heavy dose IV steroids. The pain I get feels like my insides are literally burning.
On one occasion, the ambulance arrived to find me in; just my boxers lying on my bathroom floor in a pool of cold sweat, asking them to “finish me off” it was so sore.
I suffer from a slight hearing loss in both ears and have hearing aids. It’s mainly if there’s background noise that I struggle to hear conversations, otherwise I’m not too bad.
That’s FND in a nutshell. It’s unpredictable, unpleasant and outright annoying to me. The most important thing I must do is keep a positive attitude that it will one day improve and I can then lead a slightly more normal life.
Thank you for taking the time to read a little about what I live with. Make the most of what you have now, as you really don’t know how much you valued it until it’s gone. Take care and stay safe.
Next week I will be going into detail on my mental health and how writing has helped me overcome some of the struggles I faced.
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