First, you are not alone, you are not making this up, and you are not to blame.
Functional Neurological Disorder is a real and genuine condition. There is a problem with how the brain and nervous system send and receive signals. FND is due to a complex combination of factors disrupting how the body and mind is interacting and working.
In conditions, such as Multiple Sclerosis ( MS) and Parkinson’s, disease and damage is present, but with FND there is no structural damage or disease but rather a functional problem. Yet symptoms can be just as severe and disabling.. Some people might only have one symptom such as functional weakness of limbs, and others may develop many symptoms. The symptoms can also vary in severity.
There is no known single cause of FND but a combination of how our biological, psychological and social environment can affect our brain function. Lots of different people can get FND, and it is not just stress.
We were delighted to secure funding for the ‘fly free from stigma’ project. This grant was allocated to raise awareness, educate and set up support structures for those with FND living in Northern Ireland. We are with you.
- Weakness of arms or legs, feelings of numbness or heaviness with limb movement problems (functional limb weakness)
- Shaking of arms, legs and various random muscles (functional tremor)
- Inability to walk and feet may turn in (functional spasm/dystonia)
- Unable to hold the body in a normal position with limbs moving in awkward directions (abnormal gait)
- Blurred vision
- Unusual sensations with parts of the body, feelings that those parts do not belong to you (sensory symptoms)
- Facial spasms and twitching
- Jerking of the body and/or arms and legs
- Low mood and/or health anxiety and mental health may accompany this array of symptoms
- Pain in many areas of the body (complex regional pain)
- Daily headaches
- Balance problems due to dizziness and functional walking symptoms
- Difficulty in swallowing
- Difficulty communicating due to speech problems, such as slurring and stuttering
- Sudden blacking out and falling to the ground (drop attacks)
- Non-epileptic attack is very similar to an epileptic attack but not due to misfiring of the brain but more to do with the brain going into a trance like state. This is also known as Dissociative Disorder. It is a switching off process in the brain which occurs unconsciously. You may be aware of a floating sensation or out of body experience.
Being able to access the correct services for your condition is vital for symptoms management. Your Health Services should be able to provide the facilities you require. Services such as:
- Neurological Consultant
- Occupational Therapy
- Neurological Physiologist
- Speech Therapy
Ask your GP for a referral to these services.
People with FND need to access a range of services depending on the severity and complexity of Functional Neurological symptoms. Physiotherapists and Occupational Therapists can provide an understanding of movement difficulties and may help with an improvement with exercise tolerance and mobility.
All Clinical Psychologists trained now in Northern Ireland are educated on FND by Dr Nigel Lyttle, based at the Royal Victoria Hospital Belfast.
Neuro Psychologists can help manage these symptoms and the mental health impact this illness can have. Psychologists and Pain Management Teams can help with sensory symptoms. There are many dimensions to FND and requires treatment from multi-disciplined teams.
A Neurologist will make an accurate diagnosis, using different forms of information. They will use previous medical history, present symptoms and signs and results of any tests conducted.
A FND diagnosis is not given just because the doctor cannot find anything wrong, it is made through careful evidence gathering and not because FND is the only option left. Getting a diagnosis that you trust is crucial for management and possible recovery. Lots of tests and failed help can add to feelings of mistrust. Always ask your doctor for clarification of his findings if you are unsure. The way you make sense of your diagnosis will affect how you feel about it. Most people and health professionals have never heard of FND, so try not to get disheartened. The symptoms are very real and definitely not made up. Try to gather as much information as you can, and when you are talking to family, friends and health care professionals, explain what FND is, and direct them to the correct information.
These symptoms can potentially be managed with the correct care and understanding.
Discover More about FND
This research paper is about a small study regarding patients with Functional Movement Disorder and structural gray matter differences....
This website provides valuable information about non-epileptic attacks and non-epileptic attack disorder.
http://www.codestrial.org/ The CODES trial is a randomised controlled study looking at a treatment for Dissociative (Non-Epileptic) Seizures. The trial, funded by NIHR (National Institute of Health...
N.O.R.D. – National Organisation for Rare Disorders This website is produced by NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the...
For a comprehensive explanation from a professional, Professor Jon Stone MBChB, frcP, PhD, consultant Neurologist (NHS) Lothian and Honorary Professor in Neurology (university of Edinburgh) go to https://www.neurosymptoms.org/
Being mindful is about what you are thinking and feeling, in the here and now. It is a technique used to observe everything that is happening around you, without commenting on it. Mindfulness is...