Fnd symptoms : Hi I have been told I... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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Fnd symptoms

Newfnd1
Newfnd1

Hi I have been told I have fnd about a year ago. My symptoms come and go but I can have the same symptoms or new ones. I get an attack every month or so but the symptoms that are the same get worse and more painful every attack. I have pain numbness, tingling, shooting or burning in arms, legs, feet,hands and face, loss of vision blurry, really bad headache and stabbing pains in head, really tired all the time. Need to pee more. They all get worse every time and last longer. Dose anyone else feel the same or can help

7 Replies
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Hello Newfnd 1 ,

I have been on my “ journey “ for 25 years now and EVERYTHING you’ve listened , I have or have had. May I say , in a way 😏you are a bit better off than I as because FND was widely understood vs. 1995. At the time these “ mysterious “ episodes and now I know the word “ dystonic “ movements or muscles, one of my favorites is the “voices “ or “ I can beat Mariah note AND hold it”.

I make light of it because yesterday after having two MRI’s from an ENT wanting to find out why I have Tinnitus in my rt ear for three years and sometimes it goes out completely????

Surprise .... small tumor on my pituitary gland 🤔.

So, here’s my plan for now... my only child and her spouse are having my only Grandson in 4 weeks 👶🏻.

I am not going to tell my family, except my 2 year older sister that lives 2 1/2 hours away and is sworn to secrecy to avoid “ stress “ issues. Sounds like a plan 🤗

So... Newfnd1..... I found Northwestern late last year and by a fluke the MRI found the tumor so now I figure this out.

I m sure your journey will be so much easier with all the new material available. Good Luck ❣️🙏

Hello and welcome Newfnd1

I have had this stupid diagnosis that I cannot understand to save my life for almost four years.

I believe with what I’ve just read from @fnd2014, it is a load of bull because I think each of us has something clinically wrong but the Dr’s have not received enough Financial backing to help us. Functional means we do not know what is wrong with you.

I once had functional abdominal pain years before FND diagnosis because they had done all tests and found NOTHING. Dear!

Sorry to sound aggressive but I am looking into a second opinion soon because we are clearly categorised in a category of people with misunderstood symptoms that no one wants to pay close attention to..

The way my symptoms work is exactly in the same way you describe yours. They are like the ever changing weather outside, here in England. You never know what to expect when you wake up or during the course of the day.

My advice to you, is accepting where you are for now BUT not the condition!

I basically mean if your body tells you to sleep, then sleep.

If you cannot do anything, even for 3 weeks or 3 months which I sometimes have to endure, then stay in bed and do Netflix or listen to audio books.... things to get lost in without work or effort. Your only journey on these days is to the kitchen and bathroom. End of. Brush your teeth and wash your face. Or have a quick shower on a shower stool. Prepare your (disabled world) is what I like to call it, for the bad days.

For me I have bought my own smart electric chair(wheelchair), and have other things like a hospital bed but a double bed too for good days, crutches I got myself, kettle tipper, shower chair, electric bath chair... all these items for the real tough days. To make life easier. I don’t work and I am not wealthier or even anywhere near able to pay for any of these things. I have just used any lumps of money I have received towards setting up my life when I became unwell. I am proactive and I suffer enough so why not make it easier by being proactive.

I also have spoken to Urinary nurses because sometimes I cannot pee or pee a lot more. So I have those lovely silhouette always knicker type of pads for those bad days incase I cannot completely get out of bed or just need to wear f or extra security. I have pee devices on the ready on my bed and urine bags connected just in case I wake up and it’s a bad day.

Luckily I have not required that for 6 months plus now.

Some Equipmemt the NHS provided, but most I bought myself because it saves explaining and I’m impatient and can’t be bothered to go through lengthy processes for people who cannot understand my invisible condition.

If you learn to listen to your body you will feel better on the days you do feel better.

Also you will learn not to feel sorry for yourself because they are just rest days remember 🤗

I suffer chronic pain and chronic fatigue all the time. Some days better than others. Serious difficulties walking when I can’t walk. But when I can walk I’m fine like a normal person. I even go for a drive in my adapted car sometimes.

Tremors too and plenty other symptoms like motor weakness not being able to hold anything etc. A lot of unpredictable symptoms and fluctuating. It’s insane.

Nevertheless, I am still alive I say, but I don’t know if I will be tomorrow because no one can give me a prognosis.

But....A body cannot suffer like this for a long time without side effects of a shortened life span surely I say, but no one can answer that.

My point is please take each day as it comes. I try so hard minus the depressed days to live each as if it were my last.

Today is a beautiful day I feel good inside. Also meditate and pray if your believe. He got me out of being bed bound for 6 months to a year through prayer. 🤗

Wishing you all the very best,

Love and light 💕💕💕🤗🤗🤗

Newfnd1
Newfnd1 in reply to GentleFlower

Hi thank you,

Sorry are going through all that, yours sounds worse than mine, I have days or weeks were I can barely get out of bed or walk, but I'm not one for sitting round will drag my self out of bed and try do things even if I fall over, i use to shake really badly but i found pushing my self got rid of the shaking, but exercising and pushing my self mite sort shaking out,

It makes my fatigue worse and pain worse, had no shaking for 7 months, I sleep though the day as well a few hours dosent help but I have to as by 2 o'clock I'm so tired. Do you have any tips

Thank you talking and reading over peoples stories can help me understand more

Hey Newfnd1, welcome!

So so sorry you're going through so much crap 🥺. FND is awful, not everyone has the same symptoms BUT there are many many many FND sufferers who have all different symptoms, unfortunately it would be so much easier, that said the FND family (*we aren't friends..sufferers and most importantly we are family*) we're we are here for each other, you'll find many many people who have the same, similar or ideas on how to deal with the symptoms you are having...you'll have many people giving advice/suggestions but we are NOT medically trained so we can't give diagnoses, medical advice or suggestions.

That said we know exactly what you're going through.

Headaches...very much so! I was diagnosed with hemiplegic migraines (strike mimic migraines)

About 3 and a bit years ago. I was finally told i didn't have the hemiplegic migraines it was the start of fnd.

7th January 2018 i fell down the stairs chasing the dog to stop him eating the cat and i fell.

Long sory short, i started with pins and needles in my legs, muscle spasms,Now im paraplegic, fed via a tube and have a supra pubic catheter put in as i was in bladder retention, eventually not having to self catheterization. I have damage to L4 L5 And L6 vertebrae, my spinal cord is intact but my brain can't send or recieve messages to and from my legs, cant feel or move my legs at all, from the waist down i cant do anything.

You need to see a urologist with regards to the bladder issue, mention to the nurologist the headaches the tingling and numbness, tingling and the pain, they need to get the pain sorted 1st (that's my personal opinion), get a ct or MRI scan.

Extreme fatigue is very very common.

It's awful, get your gp or neurologist, maybe your OT if you have one to get you a referral to your local wheelchair services, you may well meet the criteria to have a wheelchair.

Well from what you've said i think it will be beneficial to manage your symptoms.

Memory issue's is something else to go along with fnd. Get yourself Checked at the doc's with regards to the peeing more, could be cystitis, could be a UTI but definitely get it checked out.

Finally more positive news for you

If you're on Facebook look for (FND Hope UK Funtional Neurological Disorder)

there are so many people with this awful condition, / Disease (to me it's a disease) and it's an even bigger support group, it's all part of this support network.

I so hope all my waffling and this fudging long post has helped you somewhat.

🙄 sending big hugs, hope I've helped a little

Hi thank you,

Sorry you are going g though the same,

Can I ask with your headache do you have the stabbing pain that moves all round your head when you have headache and do you still have the stabbing pain when your headache has gone. As I have it all the time and shooting pain down my spine.

Thanks, think talking to over people mite help

Hello l have FND since 2017 it's so terrible feeling. Xx

Hi there

I too get all those symptoms, it's horrible and quite distressing when they happen

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