What is Functional Neurological Disorder?
FND is the diagnosis given to symptoms that are due to a problem with the functioning of the nervous system, and not damage or disease of the nervous system.
The difference between FND and neurological conditions such as Multiple Sclerosis or Parkinson's Disease is that FND isn't caused by a structural disease of the nervous system (brain, spine and nerves). The structure of the nervous system is normal and has no damage, but the function of it has changed.
One way to understand this is by thinking about a computer, when it doesn't work properly. Often if a computer breaks down, this is because of the "software" (the programming and coding that makes it work) rather than the hardware (the keyboard, hard drive). FND can be thought of in the same way: the hardware of the body (brain, nerves) is not damaged, but the software is not working as it should. About 1/3 of peopole who attend a general neurology clinic will recieve a diagnosis of FND.
Symptoms of FND
FND symptoms affect different people in different ways, symptoms can include:
- chronic pain
- poor concentration and memory
- fatigue
- gaint and balance problems
- headaches and migraines
- involuntary movements (shakes, tremors, jerks)
- paralysis and weakness
- non-epileptic seizures
- sensory changes
- sleep disturbances
- speech problems
- bladder and bowel changes
- visual impairements
- difficulties doing daily activities
Diagnosing FND
Your neurologist or GP has taken a detailed history of your symptoms and medical background. They also conduct a neurological examination that can identify positive signs of FND. Occasionally other investigations may be required, such as MRI, CT scan etc, which can rule out other conditions, FND can exist alongside other neurological conditions.
Some people with FND can improve just from having their diagnosis explained clearly. Others may find their symptoms affect their lives which can cause distress. Your neurologist or GP may refer you to specialist services, if you need them including:
- psychology
- physiotherapy
- occupational therapy
- speech and language therapy
- psychiatry
- dietician
Understanding FND
There are hardly ever 'quick fixes' for FND, but there are "slow fixes" that with time and effort can make symptoms less intrusive and allow you to feel better.
People who do improve say the most important factors in recovery seems to be whether the diagnosis and explanation they were given made sense to them- perhaps not immediately, but eventually.
The key seems to be appreciating that:
- You have something common- you are not weird
- You do have something genuine- you are not imagining it
- You have symptoms that are potentially reversible
- Its not your fault that you have these symptoms
- But you will need to put some work in to getting better
If your doctor has sent your clinic letter to you, read it and try ot understand it. Reading through this website may help you understand your condition.
If you can get to a point where you think the diagnosis makes sense, you no longer feel concerned about the possibility of another diagnosis, you realise that lots of other people have this too and its something you can potentially get better from then this is a good start for treatment.
Physiotherapy for FND
Since about 2012 there has been increasing evidence to support the role of physiotherapy as part of treatment for people with FND, especially those with functional movement disorders and limb weakness.
People with FND very often have fatigue, weakness or pain which they find is made worse by exercise. For many patients, the problem is not so much that they don't do any activity, its that the activity they do is quite cyclical. So, one day you might be feeling a bit better, you rush around doing all the jobs you couldn't do before because you were feeling ill, but then you feel much worse again either later that day or the next day.
The principles of rehabilitation in this situation are to recognise that you probably are doing too much on the good days and not enough on the bad days. Set yourself a modest task, it might be a walk to the shop, it might just be a small job in the house. Make it something that is a bit less than you would do on your best day but more than you would do on your worst. If you stick to the same level of activity every day, hopefully you'll find that after a while, perhaps a few weeks, this same level of activity may make you just a little less tired than it did before or cause just a little less pain.
Physiotherapists and occupational therapist can often often be very helpful in these situations. They are used to working with the day to day limitations that patients have regardless of their cause. They may be able to design a graded exercise program that suits your particular symptoms and help you work through it. Graded Exercise Therapy has been shown to be helpful for some people with chronic fatigue and pain.
Occupational therapy
The primary goal of occupational therapy is to enable people to participate in daily activies that they need to do, want to do or are expected to do. The 'occupation' in occupational therapy does not only refer to paid work, but also to all other activities eg getting washes and dressed, meal preparation, housework, child care, leisure activities, shopping, using public transport etc. Occupational therapists can help people with movement problems (in a similar way to physiotherapy), but they can also help with symptoms of fatigue, pain, dissociative seizures, cognitive difficulties, low confidence, anxiety and low mood to name just a few. Occupational therapists work with people with FND to identify the impact that symptoms have on abilities to carry out daily activities. Treatment will be based on the goals that are set by the person. The person with FND will then work collaboratively with their occupational therapist to develop strategies to overcome barriers to participation, improve abilities, independence and confidence.
Goal setting
Goal setting is an important part of rehabilitation for FND and occupational therapists can help people to set realistic and achievable goals. Carefully graded goals can help people to build confidence in their own abilities and progress at a faster rate.
Psychological therapy
Psychologists and psychiatrists who are familiar with the area can have a lot to offer people with FND. Psychologists working in general hospitals, rehabilitation, pain clinics or in a chronic fatigue service are likely familiar in this area. Liaison psychiatrists or neuropsychiatrists will definitely be familar with it.
Misconceptions about psychology/psychiatry and FND
There are a number of reasons why patients with FND can benefit from seeing a psychologist/ psychiatrist. Many patients develop FND without being stressed. The symptoms may have happened out of the blue or in relation to a physical injury and the only thing thats stressful is having the symptoms! And there are also many people who develop FND at times of stress. But this does not mean the stress was the only factor or even the main one. Of course life stresses, both recent and remote, makes everything worse, and it can be a major cause of FND in some people, but in many people it is not that important.
Many people understand why other people may need to see a psychologist/psychiatrist, but have trouble thinking of themselves as being someone that ever would. If you want to 'pull out all the stops' of treatment, you may have to leave aside your prejudices to do so.
So why should I see a psychologist/psychiatrist?
- Identifying feelings of low mood and worry- eg your symptoms may have been going on for some time. You may have developed feelings of depression, anxiety or panic attacks. Less commonly other symptoms may be present like post-traumatic symptoms, obsessive thoughts or eating problems.
- Problem solving- many of lifes problems don't have easy solutions. But some everyday hassles, like how to solve debt problems, or how to get help for a child who is being bullied may have solutions that hadn't thought of. One less problem on the list can help things overall
- Identifying traumatic events- some people with FND have experienced highly traumatic events which have made them more likely to have FND symptoms. These may involve adverse experiences as a child or adult. Physical or sexual abuse for example probably promotes vulnerability to dissociation later in life. Trauma focused therapy may be helpful in that setting and many people with FND actively seek such help to talk through and process difficult experiences.
So why should I see a psychologist/ psychiatrist? A common reasonable question is "How can talking about it actually help my symptoms?"
These are common ways in which talking about it can help:
- Being able to spend longer understanding the nature of your condition- eg that it is common, not your fault, not imagined, not due to disease but a potentially reversible problem with the function of your nervous system. It can take a long time to get your head around that, a psychologist can help you to do it
- Talking about behaviours that might be getting in the way of your recovery- eg if you have chronic back pain and weak legs you may have pain which is worse on exercise. You have been avoiding moving your back because you fear that you may be damaging your back further. By understanding you are making the pain temporarily worse but not damaging your back, this can help you experiment with moving your back more
- Talking about thoughts that are getting in the way of recovery- eg. someone with dissociative seizures may find that they became really worried about whether they are going to have another attack, for example in a supermarket or walking down stairs, the more likely it is to occur.
Sources- Psychological Therapy- Functional Neurological Disorder (FND) - neurosymptoms.org
Nhs Grampian leaflet