Bailey09

[Bailey09]

Hi I'm new to this as I found out that I have fnd .I had mri scan and ct scan and more test, they' couldn't find anything . I have trouble walking , sleeping, memory and a lot more

[Heartofgold]

Me too, especially the "lot more". You're not by yourself when it comes to FND, by any means. Welcome to the forum ...ehem…..family We're glad to have you here, despite the circumstances. Is there anything you have questions about? Anything you struggle with quite a bit? Maybe we can help.

[Bailey09 in reply to Heartofgold]

Hi Heartofgold

I have many problems, mainly walking on the side of my right foot , also I shake

a lot and can't write now cause of this . I really don't understand it at all

[Heartofgold in reply to Bailey09]

Do you have any problems with dissociation?

[Heartofgold]

Sure. Here are a few symptoms:

•Feeling disconnected from yourself

•Problems with handling intense emotions

•Sudden and unexpected shifts in mood – for example, feeling very sad for no reason

•Depression or anxiety problems, or both

•Feeling as though the world is distorted or not real (called ‘derealisation’)

•Memory problems that aren’t linked to physical injury or medical conditions

•Other cognitive (thought-related) problems such as concentration problems

•Significant memory lapses such as forgetting important personal information

•Feeling compelled to behave in a certain way

•Identity confusion – for example, behaving in a way that the person would normally find offensive or abhorrent.

***In other words, you feel "weird" in an unusual way***

In depersonalization/derealization, you may feel as if your limbs are strange and foreign, that you are not you, or that other people are not them, or that the world around you is not real. This is different than dissociation. They're not exactly 'married' but sometimes they hold hands.

[Bailey09 in reply to Heartofgold]

Thankyou for that it helps , I do have all of those .It's better when someone explains it to me as I struggle understanding a lot

[Heartofgold in reply to Bailey09]

No problem. The reason I ask is because I dealt heavily with these symptoms as well. This can trigger many episodes "elsewhere" in the body. There are different techniques that I have equipped myself with in order to combat "those" (mental) symptoms. The most important thing to remember is your sensory environment. Have a close friend/family member touch you/rub your arm to help you reconnect with reality. If you don't have that luxury at the moment, try inserting your index finger from your one hand through the palm of your other hand (Sounds crazy right?!). It won't go through unless you're dreaming, so this further reinforces the concept of being "here" and "with it". I think that's number one. Dance, paint or be creative. Oftentimes, when we use our creative side of our brain, it cancels triggers sent from the logical side. I call it embracing the weirdness. It does not last forever, but if not addressed in a thoughtful way, can lead to a very long road of recovery (when it absolutely does not have to).

[Bailey09 in reply to Heartofgold]

Hi heartofgold I was just reading what wrote , it is a fab way to explain it , I will try it thankyou

[Heartofgold in reply to Bailey09]

No problem, and if you find yourself struggling to read/comprehend, move on and ignore it. That passes after time, and lasts longer when you focus on it. If you want to/have to read something, have someone read it to you or buy audio. Or do like me - just sound it out and visualize - it gets easier

[Bailey09 in reply to Heartofgold]

Thankyou I will try again tomorrow

[DonandLisa in reply to Heartofgold]

I would love to talk to you about my husband

[Heartofgold in reply to DonandLisa]

Just say when

[DonandLisa in reply to Heartofgold]

Thankyo

[Claireeve in reply to Heartofgold]

hey my name is Claire i suffer with fnd and fibromgia and fowlers syndrome which is a bladder condition which you always go into retention and other medical problems my mri scans show alot of lesions on the brain and also lesions attacking the corpus callosum but just got told it was fnd passed of with a website and discharged they ruled ms out as my mum suffered and passed away with ms they say I don't fit in with the pattern of ms which is good news but this was my worst fear after caring for my mum for so many years I do think something else is wrong but as speacialist think they no better but they do not suffer everyday then think it's ok to not look into the neurological problem just said fnd😢 a good way of explaining what's wrong with me I struggle so much in every way you have explained I find everyday a constant battle and feel quite isloted with it all as many of us do best wishes claire

[Bailey09 in reply to Claireeve]

Claire Hi

There is so many Symptoms with fnd , I still haven't come to terms with it , my consultant explained it so I could understand it , he said my head was like a computer the hard ware is ok , but the the software isn't, I hope make sense for you. Try not to stress out about cause you will make it worse , it takes time

[bobbybobb]

i am new to this like you. so many symptoms I am unable to go out alone due to severe balance, vision and coordination. My legs are weak and I cant walk straight. Noise seems very amplified at times it can be unbearable. Upper body twitches and jerks to. Ive been like this for a year.

[Bailey09 in reply to bobbybobb]

Hi I am the same but I have to have a stick to help me walk. I don't go out on my own , I also suffer with depression and anxiety now , mine started about year half , but only found out Feb

[bobbybobb in reply to Bailey09]

yes I was only diagnosed last week. I was given a stick last year but kept thinking I would wake up and be better one day. Now I have to accept that, that might not be the case anymore. I dont suffer with depression but after the diagnosis last week and the information I have looked at, I must admit I feel quite down by it all.

[Bailey09 in reply to bobbybobb]

Sorry to hear that , just go to your doctor and explain to him how you are feeling ,they will help you it is hard

[bobbybobb in reply to Bailey09]

Thanks Im seeing him next week. Im going to ask him to refer me to the specialist Prof Edwards who has been mention on this site. He can only say no but Im going to ask.

[Heartofgold in reply to bobbybobb]

Acceptance is not defeat, and symptoms don't have to be forever. I believe we're dealt the hand we're holding, simply because we're tough enough. There's a man who coaches lottery winners on how to spend their money. He says something like, "You're a millionaire, so live like one"...which is absurd,....but I'm using it anyway..."You're a badass, so live like one"

[Bailey09 in reply to Heartofgold]

I suppose that is one way of saying

[bobbybobb in reply to Heartofgold]

I like that,

[Fndfarce in reply to Bailey09]

I also use double crutches to get to the car but any further than that and i have to use a wheelchair. I am angry still at losing the ability to work as a registered nurse and see why so many patients complained about not being taken seriously or given proper care. I see that now. Ive been on sticks for 3 yrs now and just had to start using the chair. Devistated is not enough to say how i feel, im now 46 and dying inside.

[Heartofgold in reply to Fndfarce]

Time for some positive reinforcement for you. You are much too hard on yourself. I feel like we forget to use what we're given. I find myself much too often complaining about it. BUT we should really use it. Use it to encourage another. I think we all feel like we're dying inside every now and then. Let's be real. And not just because of FND. It's human. We question everything - Why me, why this, why God, why? We forget to embrace the little rays of hope and life in the every day. Saturday, I watched a butterfly float by, and it felt like magic. Like it was there just for me. The warmth of a hug, the giggle of a child, the smell of warm chocolate chip cookies...you know, the good stuff. Focus your energy on that, and you'll find you have a lot more of it.

Much love to you, my friend!

[Bailey09 in reply to Heartofgold]

Super advice thankyou

[Donnaomalley123 in reply to Fndfarce]

Hi I was in the same boat felt like other professional s were not taking it seriously because they had no idea what fnd wa following nursing and trainerroles I loved I have also have degenerate discs from all urs of lifting so do suffer from pain a lot just feel isolated

[DonandLisa]

You sound exactly the same as my husband

[Bailey09 in reply to DonandLisa]

Hi , has he seen a consultant yet ,for his fnd . Mine sent a referral for physio, but that was only 6 session,, then had pain management which didn't work at all , now I have to have therapy talk , I've also been told to rest

[DonandLisa in reply to Bailey09]

Good luck hope you get more help than us. don was a B-Double driver which he can do anymore because of seizures so he can’t work and is in constant pain. I work but we have bills to pay and it is very hard. Can’t seem too get help from anywhere. don is seeing a psychologist and our next appointment with the neurologist is December he also has to be referred to a pain specialist but that hasn’t happened yet. He is depressed and cranky and I am sure our local doctors have no idea what FND is!

[Bailey09 in reply to DonandLisa]

Hi if you go on fnd hope it will tell u everything

[DonandLisa in reply to Bailey09]

I don’t think it is Wright he nearly died that first night FND stands for no f idea

[DonandLisa in reply to Bailey09]

I need to hear from males

[DonandLisa in reply to Bailey09]

Sorry I don’t agree. Our daughter now this it’s all in his head CRAP!!!!!

[DonandLisa in reply to Bailey09]

No it diednt

[Bailey09 in reply to DonandLisa]

Sorry ur husbands not well .It took a year and half to find out what was wrong with me ct scan mri scan and a lot more test , I got really frustrated as I was not well to work

[DonandLisa in reply to Bailey09]

This so hard. Don saw the phsycologist today it has seemed to depressed him more. I asked what they spoke about he won’t talk about anything so dam confused

[DonandLisa in reply to DonandLisa]

Sorry about my punctuation etc I don’t proof read before I send. Oops

[Bailey09 in reply to DonandLisa]

Sorry to hear that he want tell u , my consultant said to me , that I had to learn to live with it, that hit me the

hardest at the time cause I didn't know what fnd was and I still don't know now really.So symptom with it

[DonandLisa in reply to Bailey09]

Not good enough mate. This I terrible

[DonandLisa in reply to DonandLisa]

I honestly believe this is a real disorder that can be life threatening but doctors just don’t bloody know!!! This is killing us

[Fndfarce]

I was told i have FND. As my CK levels and CRP levels fluctuate grately CK ( Createnin Kinase) 941u/land CRP ( Createnin Reactive Protein) 35.2. As well as great muscle weakness all over. Even my GP doesn't agree with this FND diagnosis but neuro won't change diagnosis and send me to muscle specialists, but neuro dont want to admit they're wrong so i am left to suffer.

[DonandLisa]

I tried to get Don to read this HE Refuses

[DonandLisa]

It is exacactly what we are going thriug