Living with FND
Written by Professor Mark Edwards
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.
Support can mean many different things to many different people. The support you need as you struggle to regain your health is likely different from the support you need to maintain and balance your health. It is important that you be open minded to a variety of helpful tools as well as a variety of people trying to provide you support. Many diagnosed with FND tend to be over-achievers, who prefer to provide the help versus receive the help. It is important to find a balance. A new balance. A new conducive to your health changes kind of balance. This means knowing your limitations and allowing others to offer their support.
Talking with others is often a very healing type of support. This can come in the form of a friend, family member, or mental health professional. Sometimes the need for support creeps into other areas of our life as well such.
FND Support Blogs and Groups
Our *Facebook and HealthUnlocked chat groups are a great way to meet others with FND. There are no medical professionals on these pages and is strictly peer to peer support. Any advice or recommendations are not meant to replace the advice of your physician and not to be used as medical advice.
Please discuss all medication and symptom changes with your healthcare provider.
FND Hope Facebook groups are ‘closed’ meaning nothing will post to your open wall, although, you will see posts on your personal wall from the group. Your “friends” will not see your posts unless they are in the group. Your name will appear on the FND Facebook group page under members, and visitors to our page will be able to access a list of current members of the group but will not see content. We have one open FND public page meaning comments on this page will show up on your wall for everyone to see.
After asking to join the FND Hope Facebook Group you will receive a message from an admin. If you do not see this message then please check your “other” message inbox. You will need to read through and respond to this message. The message contains our page rules “Keeping the Family Functional.”
FND Hope Sponsored Groups for Functional Neurological Disorder:
FND Hope – Functional Neurological Disorder/Conversation Disorder This is our main International group for those who suffer from functional symptoms and their caregivers. This is a CLOSED group and only members will be able to see your posts. Once you have joined this group you can choose to join one or more of our following closed groups:
*FND Hope Mind Body Soul This group focuses on healthier living and wellbeing.
*FND Hope Carers This group is for those who provide care and support to those with a functional diagnosis.
*FND Hope Topics This group is to discuss the many topics surrounding an FND diagnosis, general patient care, and research.
*FND Hope UK This group is an extension to our main International group, offering further support to those in the UK.
*FND Hope US/Canada This group is an extension to our main International group, offering further support to those in the USA and Canada.
*FND Hope AU/NZ This group is an extension to our main International group, offering further support to those in Australia and New Zealand.
FND Hope This is an open public page. Please stop by and “LIKE” and “SHARE” our page.
HealthUnlocked is a place where people can ask and answer each others questions based on experience.
Blogs/Personal Facebook Open Pages:
There are many labels patients are given. The following all fall under the umbrella term Functional Neurological Disorder:
Functional Movement Disorder, Conversion Disorder, Functional Illness, Non-Epileptic Seizure, Psychogenic Movement Disorder, Functional Dystonia, Functional Neurological Symptoms Disorder.
The blogs above may use other terminology, however they are still FND related.
Written by Professor Mark Edwards
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,there is 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.