hello...: I am actually in the US but... - Fibromyalgia Acti...

Fibromyalgia Action UK

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hello...

9 Replies

I am actually in the US but found some information while doing research about fibro that led me to this community. Now I am unable to find the information. It was posted by a male and was about experiencing seizure-like sensations or symptoms while sleeping. If anyone is familiar with this information, could you please help me find it? I did a search but came up with no results.

Thank you so very much.

9 Replies
gracesgrandma profile image
gracesgrandma

Hi I am not sure if you have tried this but if you search in the top right hand corner and put seizures at night a few things came up. I discussed something similar very recently with a doctor and she told me that I am not having them but even if I was I wouldn't know about it. Most helpful NOT!!! Good luck :o)

in reply to gracesgrandma

Hi there

I did try that, but used a different phrase. Thanks! Am looking it up now. I am always biting my tongue against telling doctors where they can stick their degrees. They either blow off what they can't easily answer or straight out tell us we are not experiencing what we know darn good and well we are. It may not be exactly seizures but if something is happen to us I sure wish a doctor would look into our complaints further. *hug*

Andre profile image
Andre in reply to

Hi, I think you may be describing Restless Leg Syndrome which I suffer with really badly or non-epileptic seizures which I also suffer with. During the day I am very much aware of both and whilst falling to sleep I am semi aware of them but whilst asleep my wife has told of fits that always wake her or kicking my feet. There have been quite a lot of occasions where I have either woke up or been awoken by my wife because I have hit or kicked out and am bleeding. I fell asleep sitting on my sofa and slammed my foot down on my coffee table and I only woke whilst my wife was trying to stop the blood pouring from a triangular gash in the sole of my foot. It is very scary to know you can be injured quite badly and not wake up. It is to do with how when we sleep, we are meant to be sort of paralyzed but this doesn't happen and so our bodies are able to move the same as when we are awake enabling movement whilst asleep.

I hope this may be of some help to anyone who wakens with pain and no understanding why.

Royalspec01 profile image
Royalspec01

Hi there, must be something disturbing you to wake so much.. Im not a doctor so can not diagnose you will need to talk this through with one. But my sister was having wake ups and feeling anxious it turned out she has sleep apnoea and stops breathing when asleep. I on the other hand find it difficult usually to sleep longer than 4 hours and never feel refreshed anymore. Hope this helps cause sleep disturbance is crucial for us fibro mites. This is what a nurse told me and it helped me understand my condition. When we sleep we enter a delta stage where all our amino acids flush through our toxins which refreshes us for the next day it helps with repair renewals and all that stuff. With fibro this doesn't happen so well and leaves us permanently tired and that stuff. Well hope been some kinda help to you. The symptoms you would have needed to give for what you are thinking you have , im supposing he/she didn't hear or just a don't care doctor hoping its the latter. Well must be off for now please come to our sight it can be fun too as well as supportive and social. The more experiences we share and help we get helps us all live with this god forsaken illness xxxxxxxxxx

in reply to Royalspec01

thank you so much for the information. I learned more that I didn't know :) So much learning to do. It is great to meet others who can share with me and help me learn. xxx

paula68 profile image
paula68 in reply to Royalspec01

Thank you so much for that information, I have been feeling very down and didn't understand why each morning was so tough!! Thanks so much! Understanding helps xxx

silverfoxshaz1969 profile image
silverfoxshaz1969

Hi all I have not slept proper in yrs does anyone else get pins and needles sometimes when breathing in all across the chest and down the arms also sometimes when for instant when I am typing and I stop my hand keeps tapping even tho I have moved my hand away from the keyboard I get shaking of my hands a lot sometimes stopping me from writing hugs to all xx

TheAuthor profile image
TheAuthor

Hi failry_odd_mother

I sincerely hope that you are feeling well today? Welcome to the forum and I genuinely hope that you find it useful, informative and loads of fun! If I come across anything of this nature about seizures and sleep, I will send you a link to the post.

All my hopes and dreams for you

Ken x

in reply to TheAuthor

Thank you so much, Ken. This has been the most active and informative community I have found.

I wish you the best and a beautiful wonderful EVERY day :)

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