Guide to Patient Care
Written by Professor Mark Edwards
Treatments that are commonly suggested for patients with FND include cognitive behavioural therapy, physiotherapy and occupational therapy. Sometimes these treatments are combined in something called “multidisciplinary rehabilitation”, where often as an inpatient, people with FND are treated by a group of professionals at the same time. Overall with treatment about 60% of people notice some improvement in symptoms, but for many this improvement falls short of being “back to normal”. There is still a great deal of work to be done in improving current treatments and access to them and trying to develop new treatments for FND.
For many people with FND, the journey to getting a diagnosis is a long and difficult one. Often receiving a diagnosis is a relief, where there is finally a label for the problem and a realisation that many other people have the same problem. However, the next obvious question is: “what is the best treatment?”
For many medical conditions, most of them much rarer than FND, there are clear “care pathways” within health services. In other words once the diagnosis is made there are a set of treatments available which can be selected based on the exact problems a person has, their severity, other medical problems that might be present also and so on. Unfortunately such care pathways do not widely exist for patients with FND, and the few specialist services which are in operation are therefore very busy and have long waiting lists. This is a very difficult situation for people with FND for which there is no easy quick solution. In the end the solution will come from raising the profile of FND within the heath service and with better research evidence about what treatments work and which people benefit most from specific types of treatment.
This all sounds a bit negative, but there are ways of getting access to good treatment, and many people with FND get improvements in symptoms with treatment.
Below is some general advice about treatment. Please remember that FND affects people in many different ways and people who have FND may well have other medical problems which complicate the picture. There is therefore no “one size fits all” treatment, and there is no substitute for a careful individualised assessment with a doctor/allied health professional, who understands FND.
Step 1: Understanding the diagnosis
There is really no more important first step then arriving at a reasonable understanding of the diagnosis that makes sense to you. This can be difficult as FND is fundamentally quite hard to understand, and is certainly easy to misunderstand. My way of understanding FND is that the symptoms it produces are real, not imagined or put on. The symptoms themselves resemble those that are seen in structural or degenerative neurological disease, but have a fundamentally different mechanism. Structural damage or degeneration causes a “wiring problem” in the brain/nerves and results in neurological symptoms this way. In FND however, the basic wiring of the nervous system is ok, and instead it is the control of the body that has gone wrong. A good example of this is Hoover’s sign for functional weakness, where a person may have significant weakness of one leg when they are consciously trying to move it, but the power in the leg returns to normal when movement is triggered in a different way, usually by asking the person to lift up their other leg. This causes a reflex pushing down of the other leg from the hip. In this way it can be positively demonstrated that the leg can move, and therefore that the basic wiring from the brain to the muscle is intact. Functional sensory symptoms (loss of sensation/tingling/pain) can be demonstrated to have similar properties as tests of sensation “wiring” (for example electrical tests that can track sensation messages coming from the limbs into the brain) are normal. Logically this must mean that the problem in FND lies in the brain’s ability to access or control the apparently normal movement and sensation wiring. It is difficult to understand exactly how this can happen, although modern neuroscience does provide some clues. However, it does point to the theoretical possibility of improvement in symptoms, as at least on one level the nervous system is working normally and is not irreversibly damaged.
One of the commonest questions doctors are asked by people with any illness is: “why did this happen to me?”. This is a very reasonable question, but for most illnesses, particularly neurological ones, the commonest answer is “we don’t really know”. What is often more certain is that there are risk factors that make people more likely to develop a particular illness. For example we know that if you take a big group of people who have had a stroke and a big group of people who have not and compare them, then more of the people who have had a stroke will have high blood pressure, high cholesterol, will be smokers, will have a family history of stroke etc. It is important to realise that many people in the group who have had a stroke will have only one or two of these risk factors, or maybe none at all, and many of the people in the group who have not had a stroke will also have 1 or more of these risk factors too. This is because it is not true to say that, for example, stroke is an illness caused by high blood pressure. It is a strong risk factor for sure, but it is not the direct single cause.
With FND there has been historically a lot of emphasis on psychological trauma, or more broadly “stress” as a triggering factor. This is not completely unreasonable as if one does the same comparison as described above for stroke, but instead in people with FND and without FND, then more of the people with FND will have experienced traumatic/stressful life events either in the distant past or more recently to the onset of symptoms. However, this does not mean that all, even the majority of people with FND have had such experiences. It also does not necessarily mean that if such stressful life events have occurred that this is the direct cause of FND.
In my experience the commonest scenario at the onset of FND is the combination of a “typical” physical event (illness, injury) and a period prior to this of hard work a degree of fatigue caused by this and “normal” chronic life stressors that affect many people. The physical triggering event is usually something that would be expected to get better, for example a flu that would be expected to go after a few days rest, but instead symptoms continue and functional symptoms emerge. Sometimes this process can be very quick and dramatic or sometimes much slower.
Discussion of the relevance or not of psychological factors in all of this is always a difficult one for the person with FND and their doctor. Because of the way that the word “psychological” is used in normal everyday language, discussion of psychological factors can seem like being accused of the symptoms being made up, imagined, voluntary or something one should just be able to snap out of if one wanted to. In my practice I see these factors as potentially relevant to understanding why FND developed in an individual person, and because of this they should be explored in an open minded way. The reason for this is that if a person has, for example, significant depression or anxiety, previous or current stressful life experiences which they feel are relevant to the current situation, then treatment directed towards these issues can be a useful part of helping overall with FND. There are also people who develop significant low mood/anxiety after developing FND. Of course this is quite a normal response to disabling illness of any sort. However, in some people the “normal” reactive low mood that can come with any illness develops into significant depression which is a brain condition in its own right and may need specific treatment.
After an open minded discussion of these issues, many people with FND do not have significant psychological issues that seem relevant either in triggering symptoms or as part of ongoing problems accompanying the functional neurological symptoms. This does not mean that cognitive types of treatment, if done in the right way, are irrelevant. However, generic psychological therapy for depression in a person with FND who does not experience depression is not likely to be much help: this is why ideally treatment in FND needs to be tailored to the individual person. More on this below.
Step 2: Simple (but difficult) changes
Understanding the diagnosis can help people with FND to recognise changes in day to day life and ways in which they and their families have been managing symptoms which might be helpful. None of these things are miracle cures for FND, but they can sometimes help. I meet many people with FND who have a “boom and bust” pattern of activity. This means that on a day they feels slightly better they will then try to do all of the things they have not been able to do for the last period of time. This then results in a “crash” where fatigue and other symptoms greatly increase and then the person is unable to do anything at all for some days…and then the cycle repeats. This is a very rational and understandable pattern of managing symptoms, but it seems to be directly unhelpful in patients with FND. I find that for some people this pattern of activity occurs because of guilt about symptoms, and so that when symptoms reduce a little bit they feel compelled to do too much. Sometimes this pattern of activity comes just from sheer frustration at the symptoms, so that when they lessen a little people are so desperate to do things they have not been able to do for a while that they overdo things. Although it is very difficult to achieve, pacing of activity is very important and involves trying to hold back from doing too much on days when things are a little better, and also not pushing too hard on days when symptoms are worse. In this way some people find that overall the amount they can do increases over time and symptoms become more predictable. Not a cure for FND of course, but a thing which for some people makes life with symptoms a bit better.
Step 3: Treatments
In illness in general there are not many different treatment options. There are medical treatments (drugs), surgical treatments, physical treatments (physiotherapy, occupational therapy, rehabilitation) and cognitive/psychological treatments (e.g. cognitive behavioural therapy (CBT), psychotherapy). There are in addition complementary medical treatments such as acupuncture, therapeutic massage, hypnosis, homeopathy.
Given the nature of FND described in step 1 above, it should be obvious that medical and surgical treatments are unlikely to have much of a role in treatment for most people, as these treatments have largely been developed for “wiring” type problems resulting from structural or degenerative neurological disease. I most commonly use medication as treatment for other medical conditions which happen affect a person with FND. For example, I see quite a lot of people with FND who have chronic migrainous symptoms, and so I use migraine preventative medications for these people to try to help these symptoms. I see some people with FND who have depression in addition or obsessive compulsive disorder, and so I might use medical (or more commonly cognitive) treatments to help with this problem. I see this as in general “reducing the demand on the system”. In other words that if a person with FND also has chronic migraine then successful treatment of the migraine may well make the FND improve as the overall demand on the system has been reduced by treating the other medical problem.
Sedative medications in general quite often reduce symptoms from FND (e.g. benzodiazepines, baclofen, opiates), but in my opinion the downside of these drugs are often very significant. This is particularly the case for pain, a very common accompaniment to FND, where I see many people on huge quantities of sedative medications like oral morphine, tramadol, codeine. These drugs do usually dull the pain to some extent, but they rarely reduce it significantly and in the long term the doses of the drugs have to escalate to get the same effect. This in turn leads to more side effects. In people where pain is a major component of symptoms I try to direct people towards good quality holistic pain management clinics where medications are used alongside pain specific physiotherapy and cognitive therapy.
Cognitive therapy is often suggested for people with FND. As discussed above, I think it is important that this therapy is targeted to specific symptoms. CBT can be used in a rather generic way, and the experience of quite a lot of patients I have met is that they have been referred to CBT and the therapist has said they are unable to help as the person is not depressed or anxious. This ignores the fact that cognitive therapy can help other symptoms, for example pain and non-epileptic attacks, when given in the right way.
Physiotherapy can also be useful, particularly for people with motor symptoms (e.g. weakness, muscle spasms, tremor). The treatment is based on the idea that the movement symptoms are caused by an abnormal learned pattern of movement that the brain has got into and therefore “retraining” may be able to replace this pattern with normal movement. As for CBT, generic physiotherapy may not be that helpful for a lot of patients, but when done in a targeted way with a therapist with some understanding of FND it can be a very useful part of treatment.
Sometimes treatment occurs in the setting of “multidisciplinary rehabilitation” where people with FND are often admitted to hospital for a period of time (for example 4-6 weeks) to have regular CBT, specialist physiotherapy and occupational therapy. This sort of treatment is most useful for people who have severe and complex symptoms where, for example, they would be unable to attend outpatient treatment because of the level of their disability. There other similar programs for people who have dominant symptoms of pain or fatigue.
It is difficult to give advice about complementary treatments as response is often very different between different people and there is in general a lack of evidence for what helps. It is also important to note that people with chronic illness in general where treatment can be difficult, as is the case for many with FND, are vulnerable to claims from unscrupulous people who just want to make money by peddling miracle cures. However, I have had patients who have told me that they have got a lot of benefit from things like acupuncture, therapeutic massage and hypnosis. It is always a good idea to go on personal recommendation when seeing such practitioners.
In some ways this is an exciting time for research in FND as after many decades of lack of interest, there are more and more clinicians and scientists who are interested in the area and in trying to develop and improve treatment. As with most research this work is very slow to translate into real differences for people with FND and there are likely to be lots of false starts and blind alleys. However, I do hope that care pathways for people with FND will become clearer and more effective and that a greater range of treatments will be available within the not too distant future.
With current treatment about 60% of people with FND say that their symptoms have improved. This is not to say that all these people are “better”, and it is very important to have reasonable expectations regarding treatment. This means that many people with FND need long term help with their symptoms in the same way as many with neurological illness do. However with help many people are able to get back to leading a much more normal life and though they may have continued symptoms, these are more in the background than they used to be.