Understanding Functional Neurological Disorders (FND)
One of the worlds leading authorities on FND is Professor Mark Edwards. Below he gives us a clear perspective on Functional Neurological Disorders and we thank him for his time and support.
Giving a clear definition of FND is difficult, and this is perhaps part of the reason why people with FND feel uncertain about their diagnosis and how to explain it to others. I think one can define FND on a number of levels, each of which can be helpful in different ways:
- FND is a specific diagnosis, not just an umbrella term for “unexplained” neurological symptoms.
- FND is a cause of genuine, involuntary neurological symptoms.
- FND can cause lots of different neurological symptoms which can be broadly grouped into movement (or motor) symptoms: e.g. weakness, tremors, muscle spasms and postures, sensation (or sensory) symptoms: e.g. numbness, tingling, pain, cognitive symptoms: e.g. memory loss, poor concentration, brain “fog”, and attacks of abnormal movement and awareness which resemble epileptic seizures. Some people experience lots of these symptoms together, and some experience just one specific symptom.
- As with most other medical conditions, different people with FND experience different levels of severity of symptoms.
- As with most other medical conditions, some people with FND recover spontaneously, some improve a lot when they receive treatment, and some do not improve despite their best efforts and treatment.
- FND is a problem with the way the brain is accessing or controlling movement and perception (feeling, thinking). It is therefore different in mechanism from most causes of neurological symptoms which cause damage to the basic “wiring” of the nervous system. This is something that can sometimes be demonstrated on examination or can be experienced by the person with FND in day to day life where briefly and transiently symptoms may disappear, showing that the basic “machinery” of the nervous system is capable of functioning normally. Symptoms are caused by a “block” in the normal way in which the body is controlled by the brain and how the brain receives information from the body about sensation.
- Because FND is different in mechanism from other causes of neurological symptoms, the treatment needs to be different too. Treatment is therefore focussed on rehabilitation or “relearning” of normal function. This can happen with help from a variety of people including neurologists, neuropsychiatrists, physiotherapists, psychologists, occupational therapists, speech therapists, pain management specialists, fatigue management specialists and others. Most importantly, treatment needs to be individualised to the problems a particular person with FND has: there is not a “one size fits all” treatment.
- Historically the causation of FND by psychological/emotional trauma and stress and has been emphasised. Research studies suggest that as a group people with FND have higher rates of emotional trauma and stress than people without FND – however this is not the case for everyone. Therefore emotional trauma and stress seem to be risk factors that make people more vulnerable to developing FND. This means that psychological treatment for trauma and stress may be useful in those people with FND who have experienced this. Even in those people who have not experienced psychological trauma and stress, cognitive and psychological treatment can be helpful to treat specific symptoms, but this needs to be evaluated on an individual basis. It is important to realise that “psychological” does not mean “not real” or “weak” or “imagined”.
- The biggest problem currently for people with FND is the lack of a coordinated service that will provide accurate, rapid and correctly explained diagnosis and then provides access to the individualised treatment depending on the symptoms and other problems a person with FND has.
On Peer to Peer support
One of the commonest reactions I have seen when I give people the diagnosis of FND is relief that finally there is a name for a condition which for so long has been “a mystery” and “unexplained”. When I tell people with FND how common it is (it is commoner than MS and Parkinson’s disease), they can’t understand why they have never heard of it before and never met anyone with it. This is because FND is a hidden disorder where patients are often not diagnosed or are given all kinds of vague labels for their symptoms. For this reason patient support groups are of great importance to provide people with FND and their families an opportunity to interact with others who have the same diagnosis. Peer to peer support is a natural extension of this, where people with FND can support each other more directly in what can be a confusing and lonely process of seeking diagnosis and treatment, and for longer term support. It is a development which has my strongest support and I look forward to working with FND Dimensions in this exciting and important work.
Professor Mark Edwards