Can I get better?

Written by Professor Mark Edwards

The short answer is yes. We know from our current understanding of how the brain malfunctions is in theory possible.

There is of course the question: “what does ‘better’ mean?” Some of you in your questions asked whether people with FND can get 100% back to normal. For other people “getting better” may mean something a bit different, like being able to do more of the things they want to do, but not being completely symptom free. I have certainly seen people with FND get 100% better. I think it is perhaps more common for people who “get better” to experience significant improvement in symptoms so that symptoms, most of the time, fade into the background and do not interfere too much with what people want to do day to day. This is not quite the same as being 100% symptom free, but it is clearly a big change which in a real way affects quality of life.

In people attending general neurology clinics in the UK who receive a diagnosis of FND, about 40% of people say they have got better within a year, usually without much in the way of specific treatment. This study is part of ground-breaking epidemiological work done by Jon Stone and colleagues in Scotland.

There are, of course, people who do not “just get better”. Our understanding of what specific treatment might help such people is still very limited. Although not based on a great deal of evidence, my own approach is:

To help the patient...

To help the patient, their family and other people involved in their care understand the diagnosis and to try to get rid of misunderstandings (like it is “all in the mind” or not real). I think this step is of fundamental importance. I often direct people to Dr. Jon Stone’s neurosymptoms website which I find is a good source of balanced information and many patients with FND have told me is helpful. I also explain how common FND is, and direct people to other sources of patient information and support like FND Hope and the Facebook group. I think it can be helpful for people to realise that they are not alone in suffering from this problem. This education needs to include other doctors who are involved with the care of the person.

To explore...

To explore with the patient and their family if there are triggering or maintaining factors that are important, and to try to manage these. For example, is there an ongoing physical trigger that can be treated (for example pain, a neurological illness like migraine, etc.)? Is there depression that can be treated? Are there specific psychological issues that the person feels are relevant and would like to explore? This is where it can be helpful to have a team of people with different skills to help so that if people need specific psychological support (which as mentioned above does not apply to everyone with FND) then they can access it from someone who really understands FND. Unfortunately resources such that this can be difficult to access. Some people find benefit from complementary treatments such as hypnosis and acupuncture.

Looking at treatment options

For people with non-epileptic attacks there is evidence that a specific type of cognitive behavioural therapy can help. This in part works by helping people recognise the signs of an attack coming and using cognitive and behavioural “tricks” to prevent the attacks starting, and also to gain control of attacks once they are happening.

For people with motor (movement) symptoms, I have found that physiotherapy of a specific sort, with a physio who really understands FND, can be really helpful. Again, there is limited evidence to support this, and I have certainly spoken to a number of people with FND who have not found physiotherapy helpful, but I think that if it is delivered in the right way then it can be really effective. A study from the Mayo clinic found that for a group of people with functional motor symptoms, a brief (5 day) mainly physiotherapy based program of treatment meant that over 60% of people completing this treatment rated themselves as considerably improved/symptom free, and this effect was maintained when the same people were interviewed 2 years later.

I think it is important to highlight that people with any chronic illness where treatment is limited, such as FND, can be vulnerable to unscrupulous “therapists” who promise miracle cures, usually requiring a significant financial outlay. When symptoms are severe and regular healthcare fails to provide an answer, then such offers of help can sound too good to miss. However, it is important to carefully consider if the proposed treatments really are likely to help, what the evidence for this is, how likely they are to do harm, and whether the financial cost seems reasonable.

The best evidence we have (and this is limited) for people with severe symptoms is that they can improve with intensive (inpatient) rehabilitation. This often combines physiotherapy, occupational therapy and cognitive behavioural therapy and people may be admitted for some weeks to have this intensive sort of treatment. There are very few programs of this sort, and as a result waiting lists (at least in the UK) are very long. I have seen people with very severe symptoms improve, sometimes considerably, with this sort of treatment.

Even with the approach outlined above, some people do not get better. In this situation, as in anyone else with chronic neurological symptoms that cause disability, efforts should be made to provide a sufficient level of care so that people can maintain as much independence as possible.

Can I get better?

Written by Professor Mark Edwards

To help the patient...

To explore...

Looking at treatment options

Why did this happen do me?