STILL GET SYMPTOMS AFTER ALL THESE YEARS - Functional Neurol...

Functional Neurological Disorder - FND Hope
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STILL GET SYMPTOMS AFTER ALL THESE YEARS

cocoferraro
cocoferraro

Hi Guys,

I don,t write here very often, 7 years now with FND. I read all your posts and feel so much for all of you. you are all in my heart. NOW I FIND MY MEMORY IS GETTING WORSE. Have a good husband and son who understand, but feel very alone at times.

Apparently, in the eyes of the doctors etc, with this you can get totally better, get better and relapse, or have it for life. Looks like I have this forever. Is there anyone else out there who has had FND for 7 years or more, totally get what I have but sometimes it is so difficult any one out there grown old with it? cos that looks like where I,m going.

32 Replies
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Hi,

I totally understand your feelings and sympathize with you. I'm just being positive and hope they can sort it out or that it eventually fades away...

Best wishes.

Emily

Thank you so much for replying, sending love to you x

Hi there sweetie, my love goes out to you.

Also would love to give hugs to all of you as I don't think we get many, and would help a lot XXXX

Hi my name is Lynn , I live in uk. Have just been diagnosed with this FND. Finding it hard to get head around it all so have just found this page so hopefully hearing from people rather than reading about it will help me.

Lynn

I don't write on here much anymore but just wanted to say sometimes i think this site hurts people more then it helps..my wife is on yr4 with fnd...shes 90 percent better from 4 years ago though...your right it is hard to wrap your head around but just make sure u know its very real and one of the first steps in healing is knowing what fnd/conversion disorder is..education and excepting your diagnosis(and that it is 100percent real) are the first two important steps...sometimes people can write on here and bring your mind to other places that might not be good for healing...i do pray for everyone in here and i have much love for everyone in here...i know everything u guys are going through

cocoferraro
cocoferraro
in reply to Cmb3210

I feel I am in the same situation as your wife. My doctor told me if I "get it" then I may get better quicker. I UNERSTAND THIS AS MANY WHO HAVE FND ARE LOST, and we want to help them so much, But sometimes if you"Get it" then it can help with getting better. I also agree with you that this site is not always the right way to go, every person is different. I hope that things get better for you and your family Much love X

Are you absolutely certain that you have FND? Please get another opinion.

Scrumbler
Scrumbler
in reply to redhead63

Who gave you your diagnosis?

Hi, 6 years for me, 1 months rehabilitation in London for FND symptoms. Learned valuable techniques for dealing with my symptoms, have Improved since the first 2 years were horrendous and I became very depressed. Now every time I try to get further along eg walking, housework, socialising, just generally trying to keep myself occupied, my symptoms return, pain, limping, sciatica. I keep pushing forward but that fine line between overdoing doesn’t seem to have stretched far at all. I’m still unable to drive as the concentration needed just shuts me down, television is still a struggle to concentrate on and what’s going on. I still spend a lot of my time isolated with no contact because of where I live. Everyone I knew seems to have moved on and I’ve been unfortunately left behind still struggling to get some sort of life back, I still mourn my old life and unless things change drastically for the better I always will.

Hello there,

I cried when I read your post, you sound EXACTLY like me. I too had rehabilitation for 3 months which was very helpful, but my syptoms, I THINK, are getting worse as I get older. I am 54. Unable to drive either, housework is a big problem, feeling tired all the time, luckily I have some good neighbours to chat with but still feel it is a downward spiral like yourself, please find some people to chat with as it makes things better to talk, maybe groups, councilling etc. Thank you so much for replying, keep going, and plough forward, we have each other after allX with love X

Hello, omg bless you, this is so familiar. I am similarly isolated since having to stop driving, and just cannot come to terms with the loss of my life. There must be a solution of sorts to this surely? I have been told to attend the local community centre, however this made things worse as people seem to think they can "carltch" being in a wheelchair. Also I have been shunned as I'm *not from round here". So having tried social services offering, there must be an intelligible group out there to provide some meaning and mental stimulation.....if you know please share. I feel your pain, and know you are not alone in this x

Unfortunately all I’ve been told about was age concern, church groups, also I’m unable to walk to get to any of these clubs, no buses, half a mile walk to maim road which I’m unable to even walk half of that without my symptoms returning. I’m 56 now, started this journey when turned 50, I really wouldn’t be happy going to and old people’s meetings as I worked with the elderly for years and obviously it’s something a lot further down the line 🤞🤞 but it still comes down to any clubs, meeting etc you have to be able to get to them to attend in the first place. I’m seriously thinking this year of leaving my partner of 18 years and moving back to the town I lived in before I met him, I won’t improve living wher I am as it’s too isolated unless you can drive, this illness just destroys so much of the life we would normally have. Your never alone 😊

Hello, leaving a long term partner must be such a drastic thought. I feel for you being backed into that corner by this disease. It's so unfair. You're similar age to me and the thought that my life is now over makes me feel cheated. Im not dealing with it well as I can't get a definitive prognosis to plan round. If you have good support and a good doctor , I think it's half the battle , best wishes

That is how I feel, just existing and not living a life, I’ve struggled to get where I am but just don’t improve enough to walk further, drive, I keep hitting the overdo stage time after time. I do feel life is passing me by, most weeks apart from my partner who works full time I don’t see or speak to anyone else, my daughter has 3 children and is busy with her own life which she has made since I became ill, the first 2 years every time I saw my daughter and grandchildren the noise caused horrendous seizures, as the years have gone by they have reduced but is replaced by overwhelming fatigue, the isolation of where I live is never going to help me improve, it’s drastic but my partner doesn’t want to move although he accepts I’m isolated and lonely. There are certainly no easy answers in my future. Best wishes to you too.

Hi, where do you live? if its near me then we can go enjoy ourselves together! Im in Canterbury?XX

Hi, I live near Colchester, unfortunately a lot of miles from you, lovely offer though and very much appreciated.

Hi,

Yes, I’ve had it since 30, now 41. It’s something that’s debilitating, but I’ve had to put in perspective that it’s like MS or Parkinson’s and those sufferers would love to wake up the way “they used to be” too. My memory got really bad last year after a really bad flare up and then I’m on Valium because I would shake the entire night getting no sleep. That makes my memory worse! I’m able to work part-time & do quite a bit raising my 3 boys. Some days I have to crash in bed from the fatigue and just watch shows. I try to live in the moment and not focus on what I can’t remember (because it’s depressing). It’s tough because my kids are like “your always tired” when going outside to play football it too much, etc. I’m concerned too what aging with this will look like if I’m this rough in my 40’s.

I’m sorry you suffer from this chronic condition with no help from the medical profession. Keep pressing forward!

You too, sound just like me, have a valium stash given by doc to take in my darkest times, but they are many and am frightened to take the valium too often. I am not able to work anymore, but full marks to you for raising your kids, it must be extra hard for you, all mine are adults now. you sound like a really fantastic person and you are still surging on, thank you for relying to me as I feel that I am not alone. Much love X

Hello, I couldn't help but pick up on your comment re aging. Since being diagnosed in 2016 with fnd and being confined to a wheelchair for nearly 2yrs now, I can safely say I have aged 10 yrs in the last 2! Obviously this is as distressing as fnd itself, so any positive notes on possible reversal or halting of this would be gratefully received. Best wishes

Hi there, am so sorry to here about you being in a wheel chair, I am pushing this to the back of my mind, but my symptoms are getting worse and have dreams about being in a wheelchair. we can only hope that they find some kind of cure in the next 3 years! love to youX

Cognitive problems including memory loss are fairly common amongst people with vestibular conditions such as vestibular migraine (which are often misdiagnosed as 'fnd') so a) I would ask for a second opinion from a migraine specialist (other forms of migraine can cause memory loss too) and

b) I would google 'cognitive/vestibular interactions'.

Hope you get the help and support you deserve with this. Personally I didn't find the info on Stone's site very helpful since he seems to suggest that if people don't have dementia, they do have 'fnd' which looks a bit too simplistic and binary to me.

cocoferraro
cocoferraro
in reply to 210272

Apart from FND my brain scan showed small vascular disease and it cam back with "has this person got dementia", I queried this with my doc but she said these scans are very uncertain and can mean yes or no, so no need to worry. Don;t know where to go from here with that, can you suggest?? Love X

Small Vascular Disease is real. It’s not FND.

I was only diagnosed a few months ago, but my doctor is pretty sure this has been my issue for the last 13 years. I don't know if knowing this is what you have changes the way your body responds to the "software problem" or not, since it is a new diagnosis. I am still struggling to find a way to treat this or even to find a doctor who knows anything about it.

Hi poppy mum, don't worry about finding a doctor unless you need referrals to services and other movement and psychological specialists. Find some people who can actually help you. A physiotherapist who knows FND, a neuropsychologist who knows FND, a rehab program at the local public hospital, hydrotherapy, an exercise physiologist who can do graded exercise with you. A chiropractor. An Occupational Therapist who can teach you how to cope at home. These are the people who will make your life better and move you on. Love and best wishes.

Really feel for you, your doc should point you in the right direction, you need to be seen by a neurologist near you and hopefully you will get a diagnosis, then you can start to understand FND if you are diagnosed. Am thinking about you, and wish you luckX

I have a great neurologist, she just doesn't know anything about FND. It was initially brought up when I was in the hospital. Then my neuro sent me for a second opinion and he agreed with the hospital neurologist who saw me. I try to ask my neurologist questions and she just doesn't know. I have an appointment with her next week. I want to find out if she is willing to go down this path with me or if it is better for me to find a new neurologist. She was doing great at treating me when she thought I have MS and she does a great job treating my migraines. I really like her, her nurse practitioner and her nurse. There is a magazine called the Chronicle that is Austin based. It publishes a list of the top doctors in Austin as rated by their readers. She has made the list as one of the top neurologist in Austin for the past 11 years.

There is so much I want to share with you! Please do not use old mindsets to identify your condition. Hysteria, conversion disorder, psychogenic movement disorder were the learning process for where thoughts are today. Technology and testing procedures have developed and the DSM's have progressed significantly in recent years. "YOUR BRAIN IS NOT WORKING THE WAY IT COULD!"

"IT is not your fault" "This is your reality"

I was diagnosed in January of 2010 after 3 months of unexplained changes in my well being. I was 55 years old. I kept trying to work. By June, my managers said "we have to do something" so I went on medical leave. In October 2010 we put our house up for sale; My husband resigned from his job and we moved to be closer to his family for support. I believe, because of my age, I was able to get disability for my diagnosis. It has been 10 YEARS! I have episodes on a daily basis; though they are shorter than they used to be. I cannot over do it; if I work too long; lift something too heavy; or continue at an accelerated pace. I will be compromised! DO I DO ALL OF THESE THINGS? YES I DO!

OK give me a couple of days and life will be more manageable.

Let's talk about therapy:

There are many variations of this condition!

The demographics are varied: Age, Past experiences, trauma (various kinds), anesthesia, surgeries. Any one of these may have cause disruptions in the way our brains respond.

CBT Cognitive behavioral therapy from a neuropsychologist or any qualified CBT therapist is highly suggested. These processes can help you to come to terms with your current reality.

YOU ARE NOT ALONE!

YOU ARE NOT GOING THROUGH THIS BY YOURSELF!

That is why this forum is here!

Hi, thank you for replying, I agree with everything you are saying, although I know why I have this terrible thing, 7 years ago I and my family were in an earthquake abroad where we had lived for 10 years, it was night, we fled but could not get out of our house, rubble and bricks, the roof etc fell onto our heads, we managed to escape. A year later I was in a horrific accident where I lived with cactus spines in my eyes for several weeks, and so on.. as you can imagine, then I had a seizure, so I think I know why. BUT it does not make NOW any easier for me. I cannot work, cannot add up, cannot read time tables, am lost in my own street an so on. SO THATS MY STORY IN SHORT. i AM SO GLAD THAT YOU ARE ALL HERE WITH ME. What I mean is, I am not alone. I have had CBT for 18 months which was very helpful, but to tell you the truth I am just so tired, Thank you so much, X

I have some mild memory issues in that my memory just isn't a sharp as it used to be. I used to remember everything when I was working as a pediatric nurse. I was the person all the other nurses went to because I always remembered everything. Now my memory sucks. I do things to work on my memory, and I tell people when I 1st meet them that they will probably have to tell me their name 3-4 times before I remember it. I found if I just own it, it is a little easier to live with.

Hi, Have thought about all you have said, and thing that struct me the most was the bit when you said, IF YOU JUST OWN IT. My doc said to me 4 years ago, that she admired me cos I "GOT IT", same as owning it. I have spoken on this before, that if you go with what you have got then it is a little easier to live with. But it is up to the individual, as everybodys story is different.

TAKE CAREX

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Has anyone here thought of using FaceTime or Skype to form digital groups/ network so that you can meet up and communicate regularly with people in the same boat?

I realise time differences would be an issue for those in different parts of the world but this shouldn’t be an issue if you were to stick to your country of residence to form FaceTime or Skype groups?

Just a thought because I am affected by different conditions rather than FND and have 2 profoundly deaf sisters whom I FaceTime regularly and also a close friend who lives at a distance. There really should be no reason to become so socially isolated due to lack of mobility in this digital era. If anyone thinks this is a good idea you could simply suggest a time and give your FaceTime details to each other by PM?

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