Internal vibrations : Hi there Is... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Internal vibrations

whirlygirl16
whirlygirl16

Hi there

Is anyone else waking up with internal vibrations?

42 Replies
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All the time and they seem to be much worse at night and i get them all over 😔

whirlygirl16
whirlygirl16 in reply to tabey

It's so strange as it feels like you're humming on the inside doesn't it?

Yeh I get them feel them most of the time and mostly in my legs and feet , it’s like an elastic band vibrating in the breeze, I know it’s a silly way of describing it

That's kind of a good way of describing them, they are so weird. I don't get them as offend as you do thou. It must be driving you crazy?

I have to deal with it because I have been tested for nerve damage and it appears to be another thing explained as a mis firing nerve caused by the brain sending wrong signals hmmm .....not so sure I want to put it down as that but either way it’s been with me for years flaring up and down from mild to severe, I think it’s a bit of an enigma to doctors I don’t think there’s enough research going into it, as it’s not a hardware problem just a software problem with all of us x

That's exactly what I was told that it's a software problem not a hardware problem and to look at neurosymptoms website. I wish there was funding for it in Wales as then we would get more help with this condition but because it's not funded then there's not a lot the Neurologists can do here. I wish I'd been able to have more tests done thou but I forgot to tell him half of my symptoms due to my memory issues but then again maybe it wouldn't have made any difference anyhow. At least we have this website to talk to other sufferers and hopefully there will be loads more research into it as it's an awful condition to have to deal with x

Yes I agree but what can we do than just go with it , it could be worse if we had it 100 years ago we would be laughed at and told it’s all in our heads or maybe even 50 but the awful thing is that there are thousands that suffer and have not been investigated at all I am confused with my symptoms though and wonder what is down to ME which I was diagnosed with 20 plus years ago and what’s is FND I would be curious to know how many people on this site has another diagnosed condition

We would have ended up in a mental asylum a 100 years ago 😁 which is very scary but yes thank goodness we have it now and not back then. It does make you think whether it might have been FND rather that anxiety alone, as the symptoms are very alike so yes that would be really curious to know x

Yes I do and it stops me from doing things , I can't walk when it happens to me and happens a lot , stay safe x

It's such a weird sensation isn't it?

Yes it is a really weird sensation, it's like when you hit metal on say a worktop and it vibrants sorry I don't know if I've spelt it right x

Yes its exactly like that 😁 its very strange. Dont worry about spelling as i can hardly spell and have to look up most long words 😁

Yes me too, have these normally when rising from sitting or bed etc, but when they come, boy they are badx

It seems so many of us are experiencing these. Oh the joys of FND 😁

No, does not get any easier!!! but living withit for me is not so bad as my husband helps me out a lot, it is always much better if you have somebody to tell all your woes too!Sometimes Ilook for some kind of stress to trigger it, and there is none, but am still a firm believer that stress makes it much worse. NOW THIS MIGHT NOT SIT GOOD WITH EVERYONE, BUT I HAVE TRANQUILLERS FOR MY DARKEST MOMENTS, I ONLY TAKE WHEN I FEEL TOTALLY LOST AND CANNOT SEE A WAY OUT, GO TO BED AND KNOW NOTHING UNTIL 12 HOURS LATER WHICH IS BLISS, BUT HAVING FND FOR OVER 6 YEARS, THERE IS NO WAY OUT FOR ME, IT HAS NOT GOT BETTER BUT IT HAS NOT GOT WORSE SO HAVE TO FIND A WAY TO LIVE WITH THIS. supprisingly i can somewhat lead a normal life this way, as there is no other way out, HOPE I AM UNDERSTOOD AS LOADS OF PEOPLE HAVE TRASHED ME FOR RELYING ON MEDS.

LOVE

😁

I don't trash you at all. I have meds for anxiety and one of them has a mild sleeping tablet combined in it otherwise I wouldn't get any sleep, so I totally understand. I think you're dead right about stress triggering it or making it much worst x

Thank you for believing in me xx

Youm very welcome and keep strong as we are all in it together X

This is true I've had FND 2 half years coming up to three , and it doesn't get any easier not with me it's got worse x

Oh noes! That's awful you've had it over two and half years and things are getting worst. What triggers yours? I can't seem to take any stress without it progressing x

Valleyman65
Valleyman65 in reply to Bailey09

Hi Bailey09, I've had it just over two years and mine is getting worse my leg is getting weaker I'm getting fatigue faster and more often pain in arm and leg more and these tremors also hate it so much life is so crap now luckily I have an amazing family who keeps me going.

Bailey09
Bailey09 in reply to Valleyman65

I seem to wonder if life will get any easier for us all it just horrific at moment Take care , stay safe x

I suffer with severe anxiety and I think that's why mine plays up , I only had anxiety three months in with this plus other illness it's horrible, my fibromyalgia is playing up with this weather i had this a year in with FND take care stay safe x

cocoferraro
cocoferraro in reply to Bailey09

Take care, feel for u xx

I've got very bad anxiety too and social anxiety as well. I was diagnosed with GAD so it might be that's causing it then and not the FND 🤔 its awful suffering from it as you just can't control it can you? I haven't got fibromyalgia thou and Ive heard it horrible so i do feel sorry for you having that on top of the other conditions you have. Stay safe too 🙂 x

Feel for u too, u sound like a lovely personxx

You sound like a lovely person as well xx

Social anxiety can also be lighting, most shopping centres it's the lights more than the people. Considering that a lot of FND is sensory. As technology advances, nobody checks on interactions. Just my thoughts. Why else is there more weird disorders??

cocoferraro
cocoferraro in reply to MONIREN

Yes, and flashing lights, fireworks etc, even the chaneel 4 sceen where a picture is 4D! sensory plays a big part.xx

That's very true! They do just check your thoughts with anxiety when maybe it was FND causing all the weirdness. I try to avoid going to any shopping centres at all costs in fact I hardly ever go out unless I really have to as it can bring on really bad symptoms due to all the stress which I can't seem to take any of. Are you the same?

I do still go out but I have a husband who let's me hang on to his arm. Just gives me moral support plus keeps me from bumping into things. Trouble is my perception of obstacles, to my mind, even a change of patterns seem like an obstacle. Or change in texture, like from grass to pavement. Hardest thing is to ignore the looks as I manuever around an obstacle that's not even there. Its like a sensory overload. During the latest winter I couldn't use other shoes because of the different feel to my feet, had to wear sandals, ever see how dogs walk when they have shoes on? Thats me. But I'm one of the fortunate ones who can still walk. Be thankful for small things. Take care.

cocoferraro
cocoferraro in reply to MONIREN

Do you know what, all the symptons u have are the same as me! its sometimes really weird to hear that u lot are suffering from the same things as me!-dont know if I feel worse or better! My husband also quides me somewhat, I went to my local chemist to collect my pills recently and when I got there I looked at the lady and my mind just went blank!-nothing-eventually my husband took ove for me but when we got out, I felt so embarrased I could not get over it for the whole day, have to find a way to live with this. Take care allxx

MONIREN
MONIREN in reply to cocoferraro

Yes, those mind blanks. Its like you have to go through the whole dictionary to find a word. I try the alphabet, sometimes it works. The people that serve me, are patient and kind. I also have slow speech. Keep fighting! You are still you, this is just your new normal.

cocoferraro
cocoferraro in reply to MONIREN

Thank you, I feel better not knowing that I am not alone, but you have got to agree that it is STILL so embarassing, its funny cosI do loads of crosswords with no problem!OMG, same as me , when having a shower the council have installed all the handles for me, so hang onto them, as balance is so bad. We know that it is FND and not old age, but confused, cos could it be??xx

MONIREN
MONIREN in reply to cocoferraro

It's a bit like I'm losing my fine motor skills, difficult to hold things or use change, but I can write ok. I suppose its like those that stutter when talking but can sing beautiful. My wacky brain.

Valleyman65
Valleyman65 in reply to MONIREN

I sometimes feel if I concentrate on what I'm doing to much the worse it gets even writing this has taken me 15 minutes .stay safe everyone

cocoferraro
cocoferraro in reply to MONIREN

AGREE TOTALLYXX

whirlygirl16
whirlygirl16 in reply to MONIREN

I'm very much the same as you. I can still walk just about but I've tripped loads and my perception is affected as well. If I close my eyes I fall over which is hard when having a shower, especially as I live on my own but my daughter comes down to helps me with my wash needs and housework so I'm blessed. You're dead right thou we are the lucky ones as some can't even walk or care for themselves at all 😞 x

it makes me feel better to know that you are there, i am sorry, luv to youx

This was on FND hope

ELECTRIC SENSATION

Electric Sensation is symptom that is difficult to describe, but is very common. Many have given it various names such as: vibration feeling like tuning forks,creepy-crawling, zinging, or most common is an electric current. It is felt all over the body and/or only specific parts of the body such as the head, arm(s), etc. It can be felt also in varying degrees. Some have a mild version and find it annoying, but not painful. In some cases the sensation is felt so intensely it has been described as feeling electrocuted. This sensation is also often referred to as Restless Leg throughout the entire body and some do find relief from medications typically used for Restless Leg.

fndhope.org/fnd-guide/sympt...

It is in the sensory changes , I was reading it as my 12 year old has FND and has sensory problems .

What’s weird is I suffer from fibromyalgia and chronic fatigue. I have had this sensation for many years but always just put up with it , I mentioned it a few times over the years to my doctors but they could never give me answers . .

Thanks for the info that's great maybe you have FND as well? I've had really bad restless legs as well but thankful that seems to have gone but I get the vibrating feeling on and off usually when laying down

Hey there

Are you meaning like that sensation you can sometimes feel when a lorry motor is running. You kind of vibrate and you look around to see if anything else is vibrating? My Powerchair used to get the blame for this however since I switch it off more I still feel the vibration even if it is off. Or do you mean when the washing machine is in full spin? The latter I don’t feel but the former I do. Mine can turn into full tremors down one side of my body and then I can get muscle spasms that don’t release for ages.

Dom

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