Functional Neurological Disorder (FND) : a patient's guide
including Functional/Dissociative (non-epileptic) Seizures, Functional Movement Disorder and other functional symptoms
Am I just imagining it?
The simple answer is 'No!'
One of the big problems patients with functional and dissociative neurological symptoms experience is a feeling that they are not being believed. This is partly because many doctors are not trained well in physical symptoms that are not due to disease and research in these areas is very poor.
Some doctors really don’t believe patients with these symptoms. Others do believe there is a problem and are as keen to help as they would be if you had multiple sclerosis.
So if it’s a real condition but its not a disease, what is it? Are you just imagining it?
The answer is you are not imagining or making up your symptoms and you are not ‘going crazy’. You have functional/dissociative symptoms
Getting your head around this can take time. You don’t have a disease, but your not imagining it either.
The following points may help you.
•The example of migraine. Sometimes it can help to compare your symptoms to those in migraine. This is a condition which is common, in which brain scans and all tests are normal and which can be associated with all kinds of odd neurological symptoms like flashing lights, tingling down one side of the body or even paralysis. In migraine we know a bit more about which bits of the brain are going wrong and that nerves in the brain are firing abnormally, but its still a diagnosis that is made on the basis of your story.
•When someone is hypnotised is that ‘in the mind’ or are they in an ‘altered brain state’? Many people are susceptible to being hypnotised. We have all seen people on TV being hypnotised and not being properly in control of their thoughts or behaviour. You don’t need to be psychologically unwell to be able to be hypnotised. Is a hypnotic trance an altered brain state or an altered state of mind? The answer may be both, or perhaps even more accurately – it’s the wrong question. Similarly when people get functional or dissociative symptoms theres no point asking if its all in the mind. The brain and the mind are both important
•Why is it ok to admit you’re depressed when you have multiple sclerosis? Many patients with neurological conditions get depressed and anxious. Pain, disability, uncertainty about the future, effect on jobs and relationhips can all take their toll. What’s interesting is that when someone has a diagnosis like multiple sclerosis they usually find it much easier to tell people that they are feeling low or worried. Because no one questions their neurological disease, its ok to admit to these things – people are often sympathetic.
Many people with functional symptoms are NOT depressed or anxious. But if they are it can be difficult to tell people. For example when someone has functional limb weakness with pain and fatigue, there are several reasons why they may be reluctant to say if they are feeling worried or low:
- people haven’t heard of their condition and so will wonder if its “real”
- they may fear that doctors will blame all the symptoms on anxiety and depression
- because of the variability of the symptoms, for patients with ‘good days’, they may wonder whether they are sometimes imagining the symptoms (even when they are not)
Does anyone make up these symptoms?
The answer to this question is undoubtedly (and unfortunately) yes, but it seems to be rare. In recent years, more cases where people have committed benefit fraud have come in to the public eye.
For example, one man was filmed playing football when he said he was in a wheelchair. Another was filmed lifting heavy bins when he said that he couldn’t carry anything.
In another case, a man who claimed he was blind and was sueing for damages was arrested for speeding on a motorway.
When patients who are malingering like this are examined, they can have some of the same positive signs as patients with functional symptoms but there are important differences.
They tend to have very inconsistent stories (because they are making up that too). They don’t have the same kind of stories to patients genuinely experiencing symptoms and there may be a legal case or other obvious reason for the symptoms. (although this does not mean that everyone with a legal case is making up their symptoms)
There are also some people who make up symptoms in order to gain admission to hospital or have an operation. When this happens it is called factitious disorder and by general consensus, its also a rare condition. Its best thought of as a form of behaviour like deliberate self harm.
So, occasionally, people do make up symptoms and it can be difficult to tell. Some doctors (and sometimes patients) make a terrible mistake in thinking that most patients with functional symptoms are ‘making up’ their symptoms or ‘swinging the lead’.
Some patients with functional symptoms, notice that their symptoms come and go in an odd way. This can lead some patients to wonder themselves if they are 'doing it'. This is a very common experience and does not mean you are 'doing it'.
Why don’t other people or health professionals seem to take my symptoms seriously?
If you are coming to this website for self help, this is a very important subject to get right. Patients’ understandably don’t want to have a diagnosis that can be confused with malingering. I’ve explained above how rare malingering is but nevertheless some health professionals are themselves confused about patients with functional symptoms and may have a poor attitude to your symptoms.
More commonly health professionals actually have a positive attitude to your symptoms but have difficulty in communicating this. Patients may become offended by health professionals even when they believe the problem and are trying to help.
What other names have been used to describe these symptoms?
Functional and dissociative neurological symptoms have been given many different names over the years.
Many of these labels are 'psychiatric' and are based on the idea that the symptoms are 'all in the mind'. Psychological factors are often important to look at in relation to functional and dissociative neurological symptoms but the symptoms are not 'made up'. Most experts believe that these symptoms exist at the interface between the brain and mind, between neurology and psychiatry, which is why it is difficult when people (and patients) ask "is it neurological or psychological?". The evidence suggests it is both, and that actually this question doesnt really make sense given what we know about how movement and emotion pathways work in the brain.
This list does not make easy reading , but, upsetting as it may be to see some of these terms, it may help you to know about them.
Conversion Disorder - is a term popularised by Sigmund Freud and used in a standard US classification system of psychiatric disorders (DSM-IV). It refers to an idea that patients are 'converting' their mental distress in to physical symptoms. Conversion disorder refers to symptoms of weakness, movement disorder, sensory symptoms and non-epileptic attacks. The principle of "conversion" is something that may apply to a small minority of patients but there is little experimental evidence for the idea in the majority of patients (usually the worse these symptoms are, the more distressed the patient is). In the forthcoming revision of the psychiatric classification (DSM-5) the term may be changed to functional neurological symptom disorder and the requirement for a psychologically stressful event linked to the symptoms will probably be dropped.
Dissociative Disorder - is how the symptoms are described in the International Classification of Diseases See the page on dissociation for more information.
Non-Organic - is a term doctors use for symptoms which are not due to identifiable disease. It implies the problem is purely psychological
Psychogenic - is a term quite frequently used to describe these symptoms, especially dissociative seizures and movement disorders. Again it implies that the problem is purely psychological.
Psychosomatic - has come to mean the same as psychogenic although its original meaning was to describe the way in which the body affected the mind as well as psychological processes affecting the body
Somatisation - suggests that the person has physical symptoms because of mental distress. The arguments here are the same as those for 'conversion disorder'. Somatisation Disorder describes a situation where someone has a lifelong pattern of physical symptoms which are not due to disease.
Hysteria - is a term that has been around for 2000 years. It means the 'wandering womb' and comes from an Ancient Greek idea that women who had physical symptoms had a problem with their womb travelling around their body. In the 18th and 19th century it was used to describe any physical symptom not explained by disease. In the 20th century its use was narrowed more specifically to neurological symptoms and is now used more rarely.
Patients with functional and dissociative symptoms have often had a raw deal from doctors over the last 100 years. Traditionally, neurologists saw their role as simply to diagnose the patient and then refer them to a psychiatrist for treatment.
Many neurologists have taken a very poor view of these sorts of problems over the years. There is a tendency among some neurologists to view these symptoms with suspicion. Other neurologists are sympathetic but don't see themselves as having any skills to deal with the problem. Some neurologists jump to unwarranted conclusions about past psychiatric or traumatic problems which can be very unhelpful. Patients often pick up on these things which may be partly why they don't believe the diagnosis the neurologist has made.
Most psychiatrists, unless they work closely with neurologists, also feel uncertain how to approach functional and dissociative symptoms and often wonder if a neurological disease has been missed. I have discussed elsewhere in this website how psychologists and psychiatrists can be helpful in these conditions even when there is no depression or anxiety. Liaison Psychiatrists / Consultants in Psychologcial Medicine have specific training in this area and usually will understand these disorders.
Patients referred to psychiatrists with functional symptoms often feel that the doctor is just saying that its 'all in the mind'. They understandably may feel defensive talking to a psychiatrist so the consultation may end up being unhelpful.
As a consequence of all these factors patients with functional and dissociative symptoms have often found themselves 'falling through the gaps' of medicine.
Reinventing the wheel in functional 'nervous' disorders
100 years ago neurologists and psychiatrists took a view that these symptoms were primarily a problem with the function of the nervous system and that while psychological factors could be important they may be absent and are not the only important factor.
Neurologists were interested in the diagnosis and treatment of the problem and wrote books on 'functional nervous disorders' with lots of common sense in them. The wheel is finally turning back to that point of view.
In my view, a lot of the difficulties in this area could be overcome if health professionals were better educated on the diagnosis and management of these disorders
You can read a review article I wrote for doctors by clicking on the link opposite.
Remember, your symptoms are real even if doctors and others make you feel as if they are not!
Brain imaging is beginning to show us how the nervous system can go wrong in patients with functional and dissociative symptoms.,
This picture shows a SPECT scan of patients who had functional weakness and sensory symptoms on one side of their body. The scan shows that when they had these symptoms, there was a part of the opposite side of the brain which was not working properly (shown in yellow)
These types of scan show that the nervous system and brain function does go wrong in these illnesses. But it doesn't mean that you can't do anything about it
Picture from Vuilleimier et al. Brain 2001