STILL HERE 7 years

[cocoferraro]

Hi all,

I am still here after 7 years. I have a very comfortable life, but still suffer from FND symptoms, head fog is really bad now. tiredness, fatigue etc, is there any one out there like me for 7 years? xx

[Hidden]

Hi Coco, I am so sorry you are suffering the way you are. I have had Fibromyalgia for 11 years, and other illnesses, but FND for what I can gather is a few years now - I don't think anyone is sure. I know exactly what you are going through and it isn't pleasant. I have a great husband, who is also my carer. Having not had children has turned out to be a blessing, though I hate myself for saying that, because over the years they would have gone from pillar to post as I would not have been able to care for them properly. When I hear of others living in big houses and having to cope with jobs and families and going through FND and other illnesses, I think "Wow...such courage!" and it encourages me. How are you doing within yourself xx

[cocoferraro in reply to Hidden]

Hi sweetheart,your email was lovely,

I got FND when my kids were 18 years old, my son always laughs now that I scarred him for life!!!! but he has a fab career and a good wife so its one less thing for me to worry about. I know a little about fybromyalgia, as my neighbour has it, I hope that you can feel a little better with pain medication, although agree with you what you say that I dont know how other people cope who have young children etc, and my heart goes out to them. My husband is my carer too but has had his own troubles with recent heart surgery and bypass, but now is out of breathe all the time and they cant treat him as breathing clinics are all shut, so we take each day as it comes, and thats all we can do.

The only encouragement I can give to you is to say that when you get a new syptom, or trying to cope, just think that you are not alone, and we are all here, in the same boat, so much luv to you and it helps to speak,.... luvxxxxx

[Hidden in reply to cocoferraro]

Thanks for your reply, I worry about my husband too as he had a triple bypass a few years back but has diabetes now and we're trying to keep his health in check. Honestly, if it's not one thing it's another with the two of us 🙂. Anyway, onwards and upwards.... I feel okay considering I had a grand mal an hour ago. One small step for mankind.....

[cocoferraro in reply to Hidden]

Thank you for replying,I worry about my husband every day and the Corona virus has now made it worse. I take each day as it comes and just hope that I have loads more days with hime in the future, so as we can travel with long weekends. We have both been married before, he has two kids and I have one all of which are adults now of course, but we have been together 25 years and just celebrated 22 yrs married, its not long enough for me, there is still so much we have not done, am hoping that our illnesess will not hold us back in the future.

I get the feeling you are one tough lady and much like us, wishing you much luvxx

[Hidden in reply to cocoferraro]

Hi Coco (do you like ferraro chocolates or is that your name?) 😀 How are you feeling today? Great to be married that length of time. My first marriage lasted over 20 years and we ended up divorcing, even though we loved one another. My second husband had problems and committed suicide after 6 months, and my third husband is my rock. My first husband and the two of us are still great friends and he will come round and we'll exchange Christmas gifts etc. He used to work with my present husband's brother and they all know each other really well. My faith keeps me strong. I have down days, but I realise that there are people much worse off than myself. I hope you have a good day. Keep me updated.xx

[cocoferraro in reply to Hidden]

Hi Missentley,You made me laugh!!! Yes Ferraro is my real name and everybody says what you have, my husbands family were italian, there is a town in Italy called Ferrarro!!! and yes I love the chocs too! My hubbie is also my 3rd husband. First one I was married at 18 years old, but divorced when I had to have IVF as could not have kids, it took its toll on us, 9 yrs later married hubbie no.2, I had my beautiful IVF son, but found out hubbie had serveral wives all over the place, then 3rd hubbie is love of my life , been married 22 years, together 25. So life has a funny way of coming full circle!!!

So sorry to hear about your 2nd hubbie, that has to be very hard to deal with. But I am glad that you have found your rock, thats what I say about my hubbie, he has stuck with me through thick and thin and has also brought up my son who now calls him dad and loves him to bits.

I still find after all these years that FND affects me.

nearly 15yrs ago I was in an earthquake in Spain, and nearly lost my life, our house came down over our heads and we could not get out, we managed in the end but I had to save my son and 6 dogs and a cat! We had nowhere to live so slept in our garage and had our house rebuilt with our savings, our house was condemed but I had to go inside the rubble to feed my kitten whos mum had disappeared, I fed him 3 times a day with a dropper with milk until he was strong. My hubbie told me to sit under a doorway, so if more building collapsed that is the best place to survive, to cut a long story short, my lovely kitty survived and is called Rumble, as this is the noise you hear before you get the quake, he is 15 and so cute! there is a lot more to my story which I think caused my FND but dont want to blabbbbb on!!! sending love to you!!! keep strong

[Hidden in reply to cocoferraro]

😮Wow!!! You have been in the wars to say the least, and shown such courage and fortitude. You are a strong woman and I thank God for your life. I am sorry for the way your second husband treated you, mine did practically the same thing, only not with as many women. Me and my mum found out whilst going through his filing cabinet after his death! Anyway, I'm glad you're an animal lover, especially cats. My Vienna died at the end of September and I'm lost without her. Especially when I'm on a really bad day because she would jump up on the bed beside me, curl up at my side, put her paw out and put in my hand as though to say "it'll be alright, don't worry mummy" - She was my little guardian angel. Got my vaccination letter through today, but I've had to ask them to send someone to the house. They were good about it. Have you had yours yet, I can't remember? Much love 🐱 xx

[cocoferraro in reply to Hidden]

Hello sweetheart,I was very intersted to read part of your story, you sound like a very, very strong lady too,

We have always loved animals, we had a farm in spain, and had 7 dogs, all had been rescued and appalling thing done to them, hence they were all special needs! We bought 6 dogs and 2 cats back to england with us, and rented an old farm house in kent, thank god the landlady loved animals!!!, anyway, it has been so many years that they have died one by one, our hearts art truly broken, so know what a specal bond you had with your cat, Mine is 14 and the love of my life, they give us so much love as we do them but then it is so hard when they have to go. I am so sorry about your Vienna.

Still waiting for my jab letter, I am getting a bit gittery as everyone around me has had theirs!!, We manage to get there.

I hope that you stay ok and jab goes ok, but dont worry about your memory, as mine is as bad as yours, If we lived next door to each other we'd be great mates!!!- sending love to you, take carexxx

[Hidden in reply to cocoferraro]

Oh I'd love to live in Kent...so beautiful. I agree, I think we'd be great mates!!! 😀 I just found out that we, as women, are supposed to drink 2.7 litres of fluid per day or 11.5 cups. This was worked out to be 1 3/4 pints = 1litre (for my benefit) because I drink my water etc out of a pint glass I get so thirsty. Yesterday alone I drank 7.5 pints of fluids which meant I drank 4.3 litres!!!! No wonder I've got incontinence problems!!!

😆 Seriously though, I need to deal with the thirst and the liquid intake and I don't know how I'm going to deal with that....any suggestions? Much love xx

[sykgirl]

I "celebrated" my decade with FND in January. It's amazing how much you get used to isn't it! Good to know you're not the only one though. Hang in there, you're doing great! X

[cocoferraro in reply to sykgirl]

OMG-have never spoken to anyone who has had it longer than me!!!!-got so much I want to speak to you about- is it ok if I let it all go slowly, I just wish we could meet and talk to each other face to face, although of course I know its not possible, but feel an afinity with you, so sorry, so sorry, thank youxxxx

[sykgirl in reply to cocoferraro]

Nice to make contact. Here whenever you fancy a chat 🙂 Unless I'm having a bad day, then I'll get back to you asap 😂

[cocoferraro in reply to sykgirl]

HEllo there,thank you for your reply, hopefully will spill gradually, but understand your off days as i have a lot of them too

😅

[cocoferraro in reply to sykgirl]

hello, still thinking of youx

[sykgirl in reply to cocoferraro]

You too! Not having a good week, and it's nice to know you're out there 🙂

[Hidden in reply to cocoferraro]

I agree, it would be great if we could all meet up but that would be impossible for many, especially just now. Well done to both f you xx

[Paddoodlz]

I am 7 years in as well! Just found a great neuropyshiciatrist. You need to get one - it will make a difference. I found out that it is an organic illness and not psychological. He runs an FND clinic here in Ontario Canada and is trying to get other health care professionals educated. They willhelp you and not make you feel like all the others do. I hope you can fin one to help you. I know this is a horrible thing to live with - I hope you are managing ok. Please reach out anytime.

[Hidden in reply to Paddoodlz]

Hi Paddoodlz,

I don't think we have them over there, can you tell us the difference between organic illness and psychological illness in the way you are being treated please - if that's not being too nosey? Thank you. Stay safe and much love xx

[cocoferraro]

Thank you so much honey,we dont have those clinics here, we are way behind you.

I have had rehab which was a real help, but FND is still not recognised so much here, it just depends if you have a good doctor.

Thank you for the info, and will keep an eye on what is avaliable to us, am now going to look into ORGANIC ILLNESS INSTEAD OF PHYCOLOGICAL??? please send any info which may be of interest. Many thanks and I wish you well and send much luvxxxx

[Gemmamumtodane]

verywellhealth.com/organic-... this may help out on the organic and non organic illnesses , interesting read . 😊

[Gemmamumtodane]

My son has FND he is 12 years old he was diagnosed at 11 . He has a spinal cord disease called syringomyelia too .

My son was a normal child and is now paralysed with disabilities and sensory problems and spinal pain in thoracic area and lumbar area .

They say my sons illness is unique to him as there is not families out there with a child that represents like my child ( that they see ) .

He had a lumbar puncture on the 29/4/2020 to reduce pressure on his spine . Since this day he has been paralysed .

I my self suffer from fibromyalgia and chronic fatigue syndrome I got diagnosed in 2017 after years of investigation.

I had never heard of FND until they diagnosed my son .

I’m sorry to everyone that has to go through these things .

I have a husband that is my rock my soul mate . I’ve been with him since the day I turned 16 , we have been together for 21 years . If I didn’t have my husband I wouldn’t know what I would do .

[cocoferraro]

Hi sweetiepie,I am so sorry to hear about your young son and his dissability.

FND Funcional neurological dissorder is something that SOMETIMES happens after a great strain or trauma on the body, So it sounds like in your case that your son has got this because of his original dissability. I think you are a saint, helping your son, and with your own problems must be VERY DIFFICULT!!! and I understand that your hubbie is your rock, as mine is, we are very blessed!!! FDN can present a wide range of extraordinary problems, and some we are buggard by. Apart from your sons spinal dissorder, the brain is capable of all sorts of unrelated things, FND presents so many dissorders,

Have to go now, but I send much love to you and please write if you need support, its good to talkxxxxx