Hey all. I'm new here......looking for people to relate with and share advice xx

[Mickeymouse24]

So my symptoms started end of Nov 24/ start Dec 24 after an extremely stressful time in my life. It started with a feeling of being very drunk/ disoriented/ double vision/ slurred speech and I began forgetting both unimportant and important dates/ events and began mixing words together or not being able to find words all together. Other symptoms were dropping things often, numbness tingling in my face, left sided weakness/ jelly legs and arms, dizziness/ feeling I'm falling, a constant headache (since Nov), Nausea, Jaw trembling/ clenching, twitches/ tremors in my arms and legs and a feeling that my entire body is Vibrating ! It comes in a wave through out my whole body. My ears become muffled when I have these episodes and my symptoms are worse after exercise. These symptoms vary in severity but are every single day without fail. Some mornings I wake and feel great but within a couple hours am having symptoms again. I feel such a fraud on days that aren't so bad yet on a bad day I know I couldn't work / drive safely.

Initially the GP thought id had a stroke. CT was normal. Then the GP said there is a very strong possibility this is FND based on these long standing symptoms.

Please can anyone relate ?? Are any of you having these symptoms ?

How do you keep them at bay? I'm so worried about university and work going forward ......if I don't find a way to manage things I may have to change my entire career x

[Lady4]

Hi Mickeymouse24 and welcome.

Firstly breathe...

Secondly, a GP can't diagnosis FND, as it is diagnosed by "rule in" signs only. What referrals have you been given?

Sometimes our nervous system can get overwhelmed (we get overwhelmed by lifes events) and you may be constantly in the "fight and flight" stage and you just need to re-balance between the para and sympathetic state. Learn to listen to your body, it sounds like its been through a stressful time too.

My son was diagnosed with CRPS and FND in 2022 and has experienced a lot of your symptoms and currently experiencing the buzzing electrical vibrations, similar to what you described.

Try not to look too far ahead. If its FND then recovery is possible and as you have only experienced these symptoms for a short amount of time, taking back control should be easier. Although, its a bit of a winding road and there are bound to be some bumps along the road.

I am guessing you were working part time whilst at University?

[Mickeymouse24 in reply to Lady4]

Hello 🙂 thank you for your reply. Yes I am aware the GP can't diagnose. I have been referred to neurology and speech and language therapy. However NHS waiting time for neurology is 1.5 yrs + so I have booked a private appointment (still months to wait) I have had my CT also.

It's hard not to look ahead isn't it? It's a worry.....the unknown x

Yes working as well as studying xxx

[Lady4 in reply to Mickeymouse24]

Hi, yes it can be hard not to worry but stress and anxiety could make symptoms worse, so you need to make sure your CNS is in the rest and digest state too. Plenty of relaxation, breathing exercises, meditation, grounding, yoga and doing fun things/laughing helps. Also, getting out into nature and being in the here and now too.

We are always taught to look at the big picture (ourselves holistically), so what symptom is the most dehabilitating?

[Mickeymouse24 in reply to Lady4]

Yes. It's definitely definitely difficult to balance those emotions at the moment. I'm still going to the gym (strong and healthy can only be good), however I do suffer afterwards. I am getting out for walks as often as I can. And have stopped all work/ studying and other duties that were creating alot of stress for me ......all stopped since the start of Dec.

For me I find the vision,headaches and feeling drunk the worst. They are what stop me doing essential tasks and living "normally" at present.

[210272 in reply to Mickeymouse24]

While you're waiting to see a neurologist I would also ask for a referral for migraine assessment at a reputable balance centre (or you can call the Migraine Trust for advice regarding who to see) since many of the symptoms you describe are associated with migraine, specifically Vestibular Migraine. I'm so sorry to hear you've had to stop work etc but hopefully once you've got a clear diagnosis (not easy, I know) you'll be able to move forwards again (with study and work place accommodations, if necessary).

Good on you for going to the gym and I hear you re the after effects so pacing may be necessary. I agree with Lady 4 regarding the FND dx and if you do get that dx then whoever gives it does need to specify the ruling in signs for it.

[Hidden in reply to Lady4]

Hi lady 4 can you tell me what you mean when you start your posts by saying firstly breathe I find it quite offensive it's a bit like telling people to calm down when their stressed about how much their suffering.I know your always giving people advise but I don't think it's appropriate to start a post by saying firstly breathe when you don't have FND yourself so you don't know how difficult it is not to get stressed out especially when you've just been diagnosed and don't know how to close with it or what 's ahead of you.Sorry but I just finds it a bit offensive you saying firstly breathe when you don't suffer the way we do.

[Lady4 in reply to Hidden]

Sorry you took offence from my response I was just trying to help and maybe I should have started with be kind to yourself.

You are right, I don' have FND my youngest does and does that effect my stress and anxiety, yes, do I feel helpless at times, yes and thats when slow deep breaths help me face what the day will bring, regulate my nervous system. Will I find him unconscious on the floor .... will another symptom appear, an injury that I need to attend to ... a new symptom that I need to educate myself on how to manage together.

I think even though you were offended you will see that the writer of the post was grateful that I took time to listen and try and help.

[Hidden in reply to Lady4]

Thanks for your reply she was also grateful for my help as WELL and thanks for saying that maybe you shouldn't have started the post in that way.You say that you take slow deep breathes to help you cope maybe it would have sounded a bit better if you had said that to the person that wrote the post because it doesn't sound as offensive anyway that's my opinion.

[Lady4 in reply to Hidden]

We are all entitled to our opinions but didn't really think attacking someone only trying to help, give hope and re-assurance that this can be beaten is necessary.

[Hidden in reply to Lady4]

Using the word attacking is a bit of an overreaction I don't think what I said suggested that you were attacking that person.

[Hidden in reply to Lady4]

Attacking is a very strong word to use ,if I thought that you were attacking her then I would have said that.

[Lady4 in reply to Hidden]

I was referring to your comments to me. I am really passionate about helping people navigating FND and educating myself/sharing any advice that I gain from personal stories/reading journals/from the Education classes and Community at Re-Active, even when my son is in remission, because I know how scary and lifechanging the condition can be and have/and continue to help and support him in any way possible.

[Hidden in reply to Lady4]

I know that you try to support people and you try to look on the positive side but there is also a very strong negative side awell going by stories that I've read about people that have had it for years and nothing has worked would like to be positive but when you've had it for 9 years and being left to get on with it and getting new symptoms over the years it's very hard to try to be positive .I have been on this site for a very long time a new to be honest I havn't read many success stories.I'm also negative about it because I have not that long ago been told by a psychiatric and a neurologist that it's not been proven that FND is caused by trauma,I was also told by the neurologist that there is no cure for it my negativity comes from what i've been told from specialists saying one thing and then saying something different and my experience of having FND.Yes it's good that your trying to give people hope but at the end of the day are we all going to get the help we need?Going by neurologists and doctors attitude towards FND makes me very sceptical about it.Before you say FND isn't only caused by trauma I already know that i'm talking about myself a new the reasons I was given for having FND.Good luck with trying to help people, I hope your son does recover as I find it very sad that's a young person is suffering the way he is he should be enjoying life.Take care

[Lady4 in reply to Hidden]

I am sorry that you have received such bad advice/support over the years. Hopefully as the medically professionals get educated that will help turn the tide and we will all get better support.

Its not too late to turn things around and I truly believe that.

[Hidden in reply to Lady4]

Thanks,maybe I was a wee bit to hasty in commenting on what you said in your post I apologise.I'm going to blame it on getting more moany as you get older lol I turned 60 yesterday so god knows if I'll still be here to see if anything can be done for FND

[Lady4 in reply to Hidden]

Of course you will and happy belated birthday 🎂 x

[Hidden in reply to Lady4]

T HANKYOU

[Hidden in reply to Lady4]

How can you say to someone firstly breathe anyway because you do know what there Like just by reading a post

[Mickeymouse24 in reply to Hidden]

We're all here to support one another, learn and grow. I was very grateful for both responses. No offence taken at all.

[Lady4]

A healthy lifestyle yes but maybe less strenous exercise. When our CNS are presenting with these systems its usually because its dyregulated, so dont push it too hard whilst your navigating this journey.

When you are experiencing being very drunk/ disoriented/ double vision, do you feel disconnected, have an aura around you?

If you are unsteady compression may help ground you or a weighted neck wrap to help you be aware of where your body is in space.

[Mickeymouse24 in reply to Lady4]

Yes i will definitely continue with gentle exercise. Disconnected.....sometimes yes sometimes no ..... its very hit and miss/ unpredictable I find x

I really appreciate this, thank you! X

[Lady4 in reply to Mickeymouse24]

Your welcome, FND is unpredictable and it takes a while to manage but with the right team behind you, you can beat this. OT, PT, psychotherapy, yoga, meditation come to mind.

Also keeping your social circles, don't isolate yourself, even if you can't meet in person you can chat/text/video call on better days. What did you do for work?

My sons timetable was reduced, so more home study.

neurosymptoms.org/en/sympto...

[Mickeymouse24 in reply to Lady4]

Thank you. I have amazing friends and family around me. I am a senior healthcare support worker for the NHS and a student Nurse in my last year at Uni. I've worked so hard to get to where I am and I love what I do. I'd be devastated if I was unable to nurse bedside again. But I'm trying to be positive and keep focused on all that we have mentioned x

[Lady4 in reply to Mickeymouse24]

I am sure you will get to do your dream job, just pace yourself with your studies, try and keep your anxiety under control, stay positive and take it a day at a time. Celebrate the "wins" and don't dwell on any set backs.

Just remember you are not alone.

[Shimmyaway in reply to Mickeymouse24]

A neuro physio advised me to lie on my back, knees up, and move the pelvis side to side or back and forward, to loosen up,.. and also soothe the nerves coming out of the bottom of the spine. This had enough of a calming effect on my CNS to let me sleep better. I know we all have different symptoms, so different solutions .. but something to try til you get more professional help to manage the FND at least...treatment access is as unpredictable as the symptoms...and doesn't usually come from neurology, who just do the diagnosis... so expect to be referred on. All the best for a bump free journey.

[Hidden]

Hi sorry to hear how much your suffering I have most of yours symptoms as well it's easy for someone who hasn't got the condition to tell you what to do people will never know how much we struggle unless they have FND themselves.I have tried to relax and do nothing so that I give my body a rest and hope that I will have a bit more energy but it doesn't work I still get out my bed feeling weak in pain and jelly legs,everything is an efforts especially when you've got the dizziness aswell it's really bad I havn'tw been able to go out because of the dizziness I feel as though i'm going to collapse,it's also not easy to stay calm when Therese things that that need done and you can't do it because your either in pain,to weak and can hardly stand,and then the dizziness and every other symptom that you get FND turns you in to a completely different person well that's my opinion anyway it's so hard to stay positive when your suffering to the extent that we do.I have said before that's I would like to give my head and body to people and says try to function when you feel like this.It must be so hard for people that work to get FND because thier used to getting out and meeting people and then you go from that to struggling to even communicate on a phone,I gets embarrassed having to speak to people because I stutter and my mind goes completely blank.As for exercise i'm the same as you it makes me worse.I do hope that you manage to get help and that your able to get back to work and study.I feel your frustration and panic about what the future holds for you I HONESTLY HOPE IT TURNS OUT WELL FOR YOU, TAKE CARE.

[Mickeymouse24 in reply to Hidden]

I really appreciate this reply! I feel you!

The embarrassment is real, I feel a burden to my friends and family (I know they would never feel that) but I feel it! I also struggle with my mind going blank.......for example last night I couldn't plate up dinner ! Sounds so stupid ...... I just kept staring at the food and the plates and didn't know what I ahd to do next....what to put where, what to hold , what to move etc ....... it took forever and it was a mess! The food went Cold. Then I felt stupid/ frustrated/ angry/ upset etc .....

I find this too........ I had a very good day a few weeks ago and felt so positive and hopeful that perhaps this was the beginning of feeling better .......and the next day it was like I'd been hit by a bus and every symptom was the worst it had been since week 1!

I also feel very heavy when my legs feel like jelly....its the strangest feeling.

I also struggle with talking / reading/ writing/ concentrating and even watching tv for any length of time .....I feel like I've walked 10 miles afterwards.... my symptoms get worse and I often fall asleep. Xxxx

Thank you ...... Its nice to relate as sometimes I doubt myself/ symptoms and I think maybe I'm in denial .....I often feel guilty/ like a drama queen or a hyperchondriac on my good days .......then a bad day hits and It's weirdly reassuring because then I remember that it's not all in my head and I'm not going crazy. X

[Hidden in reply to Mickeymouse24]

I feel as if we might have been cloned lol I also feel like a drama queen even though I've had it for 9 years all I do is talk about FND to my friends on the phone and how bad I feel it doesn't let you forget that you have it.I have went to stick my electric fag up my nose instead of nasal drops and want to put the oil for my fag in my eyes instead of eye drops,i've put my dirty washing in my chest freezer so on and so on.The dissociation is murder and it's worse when your outside half the time I hadn't got a clue where I am or what I doing it quite frightening.Do you know if your hypersensitive to noise because I was getting angry and agitated when people were being loud I thought I was going mad but I found out i'm hypersensitive to noise it brings on shaking and tremors aswell.I'm about to fall asleep now lol i'm drained.When I get was diagnosed by a neurologist I was given a bit of paper and told to Google FND.ORG and left to get on with it like a lot of other people.One thing I want to say is if you get other symptoms that your not sure off don't be scared to go to your GP to get them investigated incase it's something else,they put everything down to FND but you have to stand yours ground and tell them you wanted it check outw.Take care ❤.

[Shimmyaway in reply to Hidden]

I have been trying to pin down my own noise problem, and have ended up phoning myself daily ... crazy, but it allows me to know when the phone beeping noise is coming, what the volume will be, and what the ringtone is . This way I am more in control, and once I have got used to the current tone/volume I can vary it , and in this way move forward to master my shaking reaction to that sound. Slow progress, but how else can we reduce the hypersensitivity ?

[Hidden in reply to Shimmyaway]

I have tried to get myself used to noise by turning my tele up a bit louder oh my god the anxiety and anger that it causes it's hard to explain the instant reaction I get I could kill someone lol I can't turn the tele down quick enough.I was on the phone to my friend and she was taking something out a paper bag the noise went straight to my brain I shouted what the hell are you doing.People think that I overeact when it comes to noise I don't think about my reaction it's instant and out of my control.I'm going to be moving to a bungalow soon due to my sensitivity to noise,the noise above me is making me distressed so housing aside there would move me.Whoo hoo can't wait.Good luck with trying to get yourself used to noise.Take care

[Shimmyaway in reply to Hidden]

Glad you are going to be able to move soon to avoid the noise. I understand the sharp immediate reaction you get, as that is how mine is, it's not under my control ..though not accompanied by any emotions, as yours is. The expression ' a quiet life' takes on a whole new meaning with some brands of FND!

[Hidden]

I'm not being negative here but you can read this and you can read that about FND but when it comes down it the help we need is not available due to lack of resources and funding.Seemingly you have to retrain your brain I wish the hell someone could tell new how you do it.Sorry if I seem negative about FND it's because I've had it for 9 years and I was only offered physio and seen a psychiatrist which didn't help at all I hope you have more success.

[Mickeymouse24 in reply to Hidden]

Not negative at all, it's real. I appreciate it x thank you x

[Shimmyaway in reply to Mickeymouse24]

One positive thing you can do is to sign the current parliamentary petition for better FND services, to be found at

petition.parliament.uk/peti... .

Thanks in anticipation

[ChaosCats]

Talk to a neurologist if you haven’t (although the wait process can be long and awful) because that’s how you’ll get a diagnosis. But please please please PLEASE remember: just because some days are better than others doesn’t mean you are faking it. Big things: coping strategies for anxiety are super important because for in my experience, if I get anxious about the symptoms, the symptoms get worse. Doing something to distract from symptoms is also good. I like playing word games for example.

[Mickeymouse24 in reply to ChaosCats]

Thank you for your reply. I really appreciate it. I've booked a private appointment with a neurologist as NHS waiting list is 2 years + ! I often feel a fraud when I have a good day!

The last couple days have been good for me and I have moments of feeling guilty and like a hyperchondriac ! Then the nights have been bad and I remember why I have booked in to see the neurologist! X it's such a horrible mix of emotions x

[Pennybun]

Hi Mickeymouse24,

You're symptoms sound similar to mine, though I tip into dissociative seizures. Before that I am dizzy, my brain feels heavy/hot, I start blinking excessively and if it escalates I lose control of my speech; sometimes babbling, sometimes shouting and my upper body tends to twist and jerk too. If I don't go into full seizure I can still be dizzy most of the day.

I suggest you get a referral to a neurologist (or go to A&E ... that's where I was diagnosed by a neurologist when I was taken in for seizures). They may then be able to refer you on to a specialist service, though its NHS so be preparred for a wait. I'm under the NEADs (non-epileptic attack disorder) service in East Sussex.

As for managing symptoms, I do painting and embroidery. Putting your attention away from the symptoms lessens them, and can even make them go away altogether. As I understand it, recovery is a process of forgetting. Your brain has to forget its current dysregulated state and learn a new state that's better. I've subscribed to a brain retraining program which I'm hoping will help alongside the NEADs care.

Sincerly wishing you well on your FND journey, if it is diagnosed as such. Feel free to reach out if you have any questions for me, happy to chat.

Warm regards

[Mickeymouse24 in reply to Pennybun]

I really appreciate this ! Thank you ! Xxx