FND and Me

I came across the term Functional Neurological Disorder on a Facebook Fibromyalgia page, prior to this, like many other people, I had never heard of the condition. When you have undiagnosed symptoms it’s very easy, although not advisable, to turn to doctor Google and I fell into this trap a few times yet I never came across FND until the Facebook post. I showed my partner the article and we both thought it was interesting and that I was definitely experiencing many of the symptoms. FND is actually a fairly common condition and accounts for nearly a third of Neurological diagnoses and yet most people are unaware of it. As April is FND Awareness Month I thought I’d share my experience with FND and how I was diagnosed in December 2020.

Black and white hides a multitude of sins. My face was lobster red after a hot bath to try and get my body to stop screaming.

For years now I have been struggling with a plethora of issues; my memory, forgetting the names of things, where I had put things, what I was doing in a particular room, etc – it was very disconcerting and, although I was aware that lots of people experience these things fairly regularly, I knew something was not right with my thought processes. If I was at a social event I would often avoid introducing people because I would regularly completely forget someone’s name even though I had worked with them for years, or had met them several times previously. This, as I am sure you can imagine, is highly embarrassing and I would get paranoid that people would think I was just extremely drunk or didn’t care about them or know who they were. Initially I put these incidents down to ‘fibro fog’ but as my ability to multitask decreased, and I kept getting my words mixed up at work, I was growing more concerned, as was my partner. Then in June 2020 I started to experience severe tremors, I had several falls, and had a few instances of forgetfulness which were potentially dangerous such as leaving the grill on having retreated upstairs to chill. I was also experiencing dystonic episodes where my hands and feet would go inwards and completely rigid and I would start opening and closing my mouth uncontrollably. I could hear what was going on around me but I could not respond. One of the major triggers of dystonia for me is alcohol, so I need to be much more aware of my alcohol intake and if I start to feel ‘funny’, that’s the only way I can explain the pre-dystonia feeling, take myself out of the situation and ‘reset’ as I call it. This seems to work really well and I haven’t had a full dystonic attack since January. I do get smaller ones, where I am perfectly alert and coherent, but where my right hand will go completely inward and rigid, but with distraction techniques and my partner massaging my hand it generally doesn’t last too long.

In December 2020 I was seen by a wonderful Neurologist at Kingston hospital. She performed an examination and carried out some tests to see if my tremors eased with distraction, which they did. I was then sent for a brain MRI to rule out MS. The thing with FND is it is not a disease but a problem with the way the brain and the nervous system send and receive signals, so it’s about retraining the brain and encouraging it to use different pathways. I’m probably over simplifying things but this is how I understand it.

The sunflower lanyard is for people whose disability may not be obvious.

There are definitely restrictions and enforced adaptations that come with my FND; I have to concentrate more on what I’m doing, if I am going anywhere on my own I have to be very careful that I don’t get distracted and cause myself to fall or lose balance, I sometimes have issues with my speech (which my partner refers to as going “into the remix”) I can’t always prepare my own food, and have to wait until my partner is home to take a bath. For someone who has always talked a lot and is, I think, fairly articulate and very independent it’s difficult to accept help and acknowledge my new limitations. My symptoms, at present, are certainly life changing but they are not completely debilitating like they are for some FND sufferers.

The purpose of FND awareness month is to get this condition recognised, not only by the general public, but also by the medical profession. As I discussed in my last blog, when there is no clear cut disease, or quantifiable cause for your symptoms they are sometimes dismissed as being psychosomatic. As such it can be a lottery as to whether you will see specialists who are familiar with this condition and the complexities it can cause or not.

If you would like to find out more about FND please see my useful links and further information page.