🎥 What is FND? | Living with Functional Neurological Disorder 🧠

hello welcome back or welcome if you're new I'm Zara and I have a couple of disabilities that I post about but this video is going to be about functional neurological disorder which squishes down to fnd D now the 13th of April is actually f&d awarness day so this week's video is going to be all about fnd as a condition and a little bit of my experience dealing with it and living with it I will do an entire video based on my journey detailing like all the different parts of it but this is going to be more of a generalized video teaching you about the symptoms and the condition and a little bit about how you can help people who are living with it or maybe how you can be more accepting and understanding just a few of the pointers that I've learned from my own experience I do want to preface this by saying I am not a neurologist I'm not a doctor I'm not qualified medically to diagnose this or to give out advice on it but I am somebody who's lived with it for around four five 4 years now I have my own experiences and I'm going to be talking from that perspective but every single person with f and D has had a slightly different experience and obviously symptoms can change people have different symptoms you don't have to have all of the things I've experienced in order to have f& so if you do think you're experiencing any of these things or you're worried about your own health please speak to a doctor an actual professional and yeah please try and speak to a neurologist if you are experiencing any neurological symptoms because a YouTube video as helpful as they are it cannot diagnose you or give you medical professional advice about symptoms so first I want to talk about what fnd is and the kind of symptoms that it causes I will link some resources down below so if you do want to research a little bit more or find out where I'm kind of getting all these facts from and what I'm referencing I will leave links to all the websites and Charities down below so fnd stands for functional neurological disorder which basically means there's a problem with the functioning of the brain fnd causes disruptions in the signals between the brain and the body meaning the functioning and the signals don't work as they're supposed to f&d is often Associated as a software problem rather than a hardware problem meaning it's through with the signals and the functioning of the brain rather than a structural damage to the brain it's quite a difficult illness to diagnose because there isn't a test that shows up and says yes positive for fnd there's not a scan that you can do that brings up an obvious defect in the brain although there have been images recently that have surfaced I think it was MRI scans and it has shown structural differences in people with f&d so we're finally getting somewhere with research but there isn't a lot of research about fnd unfortunately cuz there isn't enough funding but that's why people with fnd like me want to educate about it because so many people don't know what the condition is it makes it really difficult to get support and understanding even in the the healthcare system as I've touched on you can probably tell that fnd is difficult to diagnose it is actually considered a rare disease but the actual prevalence and diagnosis rate of it doesn't reflect how many people suffer with functional neurological symptoms and it is widely thought that a lot of people with fnd maybe aren't diagnosed or they're misdiagnosed so it's really difficult to pinpoint how common it actually is I read a statistic that around a third of Neurology referral actually end up being diagnosed as fnd which to me doesn't suggest a rare condition I know so many people who have had neurological symptoms that have ended up being diagnosed with fnd or they've had functional neurological symptoms but it's still considered a rare disease and I don't know whether that is neurological problems are rarer in general or whether it's because of the lack of understanding and awareness surrounding FD so people don't really talk about it but I'm hoping to change that I'm hoping that by talking about it more and sharing my own experiences and encouraging others to share their stories and their experiences we can slowly try and destigmatize f&d as a condition because I have had to educate so many doctors on my own condition because they don't know what it is and they're supposed to be telling me what to do and it's really frustrating spot to be in because it's difficult being a disabled person if people don't know what your condition is and you have to spend your energy trying to educate them and tell them what you need and what your condition is it wastes so much energy that could be spent on trying to put in place things to help your symptoms or to improve your condition a lot of awareness definitely does need to be done but this is a start okay so symptoms of fnd this is a very wide spectrum it's more of a really wide spectrum of different presentations that fnd can take and all of these are valid you don't have to have every single symptom to have f& I think one of the most prevalent co-occurrences of fnd D are non-epileptic seizures or NES now this is technically a separate diagnosis but it comes Under the f&d Umbrella so I have fnd with NES functional neurological disorder with non-epileptic seizures so seizures are probably my number one biggest symptom along with paralysis those two are like the big symptoms that I think a lot of people with f&d do suffer with and they're quite debilitating symptoms too they're very obvious and I think they were the reason Reon that I knew that something was going on with my body the other symptoms sometimes can be put down to other things or you're not really sure what it is whereas being paralyzed or having a seizure is a very obvious kind of problem I guess it's very obvious that something's going wrong and that it's neurological those were my first symptoms and they're still my most prevalent symptoms but there are so many other things that people suffer with I'm going to read out a list of symptoms that I have and then I'm going to add in the ones that are Maybe more rare or that only some people have chronic fatigue is one I have chronic fatigue chronic pain they are definitely ones that go a lot more unnoticed because it's hard to pinpoint and it's hard to explain to people that chronic fatigue is very different to tiredness and chronic pain is very different to having a pain or an injury headaches migraines weakness weakness is a big one of mine I often get weakness that's in one limb or another so usually I get it from the waist down so it's my legs my legs are the most affected Thing by my f& it's typically the left side of my body first I don't really understand I don't really know what causes that but generally the left side of my body goes weak first and my left leg is always slightly worse than my right leg but usually it's always my legs that kind of the symptoms go to First another big one especially for me is dystonia or limb locking this is where muscles contract and they stay so my wrists lock like this and I've had it locked like this completely rigid not being able to move anything for 2 weeks at a time before so it's obviously quite painful if it's stuck like that for a very long period of time even if it's stuck like that for just like 4 to 8 hours it's still very painful and it's very debilitating you can't do anything if you can't use your hands cuz you're not used to it and for someone who usually has full use of their hands suddenly having them locked like this is very I don't know it's very hard you can't do anything you can't feed yourself you can't go to the toilet you can't put your hair up like every single little thing is affected by just that one symptom that also happens with my feet it's very hard to explain but my feet lock inwards so like the hands it just locks cramped like in to the side it can cramp in other positions I think and I know people who have had Donia that is maybe their whole legs or their whole arms and I know people whose arms kind of crunch inwards and they get stuck like this I've had one do that before again the left side but yeah the Sonia is basically just where the muscles cramp and they stay it's not fun it's very painful I'm I'm laughing as I say this laughing but it's it's just my way of getting information across it is not funny whatsoever it's a really really freaking difficult condition to live with and I try and look on the positive side of things but it's really difficult it's really hard don't know if that comes across fully in videos and things that I post cuz I I try and stay light-hearted and educated about it and you know try and keep upbeat because this is my life this is my reality so I I don't want to live being miserable and it is hard it's difficult but yeah there are some of the symptoms that I have but other ones that I have actually experienced before are visual disturbances or loss of sight loss of hearing involuntary movements so this can actually look like ticks functional ticks are a symptom but I have Tourette Syndrome personally which is a separate diagnosis but I happen to have the two but yeah fnd D can actually cause ticks but it's not the same as Tourette's cognitive changes gate and balance problems or foot drop is a really common one which is where if you're walking your feet don't pick up to place on another step if that makes sense if I was walking my foot would do this instead of picking up and going down I often get that along with my paralysis or Donia or weakness symptoms that's a very common thing that my legs generally do speech problems is also a really common one hopefully touch wood don't get this as much anymore but I used to get this especially surrounding my really seizur days when I had a lot of seizure activity going on and I'd lose my speech I'd stammer a lot and I'd just basically slur and not be able to get words out sleep disturbances is another one insomnia bladder or bowel changes brain fog memory loss what else I can remember two more symptoms that I have and then I'm going to leave it there cuz the list does just go on two big symptoms that I've had before are drop attacks which are basically where my entire body just loses its tension I think is a good way to explain it I just drop usually it's my head but it can be my entire body I will feel it coming a little bit like the feeling before a seizure and I will just drop and everything will go limp and I will just like hit the floor or hit the table it's not very fun it can either happen really quickly and suddenly like that and I have dropped to the floor quite a lot of times that used to happen a lot in school and in college as well I've dropped to the floor in front of entire classrooms or an entire canteen full of people when I was paying for my food um that was a fun one that is sarcasm that was not fun at all but it can also happen slowly where it feels more like a sleep attack cuz sleep attacks are also things so like Drop attacks or sleep attacks where I kind of fold in and I can't move so it's not like fainting because I'm still awake I'm still kind of aware I'm just a bit drowsy and it just feels like my body goes to sleep but my mind is still awake it's really difficult to explain I'll maybe have to do a video on those symptoms in general and try and explain the feelings behind them let's move on who can fnd affect fnd can affect anybody and I don't mean this in like a threatening way but it could happen to you it could happen to your family your friends there isn't a certain criteria that someone has to meet in order to develop f andd it can literally affect anybody at any age I think f& is most common in young people so like young adults and adults I think are the most predominantly affected group but it it can affect children it affects a lot of teenagers it affects a lot of adults both men and women although I think it is more prevalent in women but yeah it it can affect anybody and it can happen suddenly or it can happen after trauma there is no set reason for someone developing fnd fnd is considered to be multifactoral which is a difficult word to say but it also means there isn't one factor that contributes to developing the condition there are so many different aspects to fnd like it can be triggered by stress it can be made worse by stress even if it isn't caused by it it can come after trauma after head injury it could come at random I know people who have not had a history of mental illness they've not had any trauma go on and they've just woken up one day with the symptoms and their life has been changed and they've become disabled so I think it's really important not to judge f&d patients not to judge people with f andd and think you're struggling mentally so it's becoming a thing physically that is a really big misconception of fnd is that it is a psychological problem that is manifesting as a physical problem this stems from an old label conversion disorder which used to be put on fnd patients wrongly this is not the same thing conversion disorder is not fnd and that is why that label is not used it's really harmful fnd D is not a psychological problem it's a neurological problem with the functioning of the brain and it can link it can be triggered by in some cases mental illness or trauma but that is not the reason behind the brain's lack of functioning that is simply a trigger or a stressor that makes the symptoms worse or it can be a factor in the onset of it is there a cure for fnd D no there isn't a cure or a specific treatment there's no pill that you can be given to get rid of it it's not something that you get diagnosed with and then you do six months of treatment and you're you're fine you've recovered it's something that is considered a chronic illness it's a chronic condition but some people can recover from it some people symptoms do go away and they're either managing them better so they're not affected by it or some people in years to come it might disappear but there is no way to definitely get rid of it it's just something that we have to live with and it's more learning to manage and live despite having it and with it rather than trying to rid yourself of the condition I personally have had symptoms for 4 years already and it it's been said that it it is a chronic condition and it's very unlikely that after all this time and the sheer prevalence of all my symptoms that it's going to magically go away but everyone's experience is different so getting an f&d diagnosis isn't a life sentence to severe disability does mean that it probably isn't going to go away and with different life events or if you have a specific traumatic year of your life your symptoms may come back or they may go if you stop working and you have more rest time I think it's more dependent on what your life is like at the minute I'm personally quite busy at the minute I've had a lot on and my symptoms are worse I'm now in my wheelchair 80% of the time rather than say 20 or 30% and that leads into coping strategies which honestly varies from person to person for me my main coping strategies are reducing stress reducing my workload leaving school was a massive thing that really improved my symptoms that was the main thing that got me to a functioning level that I'm at now yeah just making my life less stressful cutting out friendships and toxic people making my life just a bit more enjoyable and easier and quieter and keeping to myself a bit more has really helped and then of course Mobility AIDS so I have a couple pairs of crutches a lot of braces and physical things to help when symptoms are flaring up that just helps to support myself so I don't get injured and then make the symptoms worse and my wheelchair helps deserve a lot of energy which helps with multiple different symptoms and obviously my wheelchair really helps if I'm paralyzed and my limbs literally aren't working then I need to use that but just putting things in place to help whenever the symptoms appear that is the most helpful thing that I've found and it's just learning to live with it and finding a community and learning that although you can't necessarily control your symptoms learning to not let fnd control you and determine how happy you can be or what you can do living with D is hard it's hard and it can be lonely and isolating so I think trying to reach out to a community and putting all these things in place to make sure that you can live your life no matter what symptoms you're having I think that is a really useful and really like relieving thing to kind of put in place making this switch from I need to wait until I'm better to do things and I can do things now if I accommodate enough and do things in the way that I need to is the thing that helped the most in me accepting my f&d diagnosis and accepting the fact that yes I'm chronically ill I'm disabled and it's not going anywhere but it's okay because I'm still worthy as a person I can still live a really happy life despite my symptoms yes it's a bit more difficult yes I freaking hate the symptoms a lot of the time and it's not fun and it's painful and it's exhausting but it doesn't mean that I can't live my life and still be an amazing person you still are worthy and you still are capable and you can do so many things even if you do have fnd it doesn't have to stop and put a Hal to your entire life it can change your life it definitely changed mine I thought I'd be at University doing this and driving I can't do any of those things but I love my life I found other things that I love and I've adapted to it and I've just accepted that this is my life now and I like it that is a great note to end on I'm glad I made the little full circle back to an update of how I am now my legs are so bad at the minute I'm using my wheelchair my legs are completely numb from the knees down for some reason yeah my legs are just really not good at the minute my symptoms are flaring up but I've done things I went out to the park yesterday in my wheelchair and got very muddy I've been socializing I've been doing things but because I've put these accommodations like crutches and wheelchair and rest in place I can still live my life despite having my symptoms but yeah I hope that educates you I'm sorry if that was a very long rambly video I will try and edit out as much as I can and make it as digestible as possible but I hope you learned something I hope it's was interesting or if you have f&d yourself I hope you feel comforted or maybe Less Lonely by watching and knowing that you're not alone and that there is a community out there and that you can do things you're capable you are worthy f&d doesn't have to Define who you are as a person I hope you enjoyed don't forget to subscribe if you liked it I'm going to be doing a couple videos on f& because it is f&d Awareness Month f&d Awareness Day is when this is going to go up but I'm going to continue to post about it especially since my symptoms are flaring up at the minute and that is a great time for me to record them and get a little bit of Education in but yeah I will see you next Sunday 5:00 p.m. for another video and I hope you have a lovely lovely day [Music] bye