sleep paralysis

Posted , 10 users are following.

Hi everyone

sorry its been a while but I've been in a living nightmare for the last month or so and too ill to be bothered trying to figure out how to work the laptop!!! (amazing how everyday things can become such impossibly difficult tasks :? )

I've been lucky enough to have one virus after another and completely unable to get back on my feet lately, developed a lovely crop of very painful boils and have become awfully allergic to penicillin which resulted in major breathing difficulties and needless to say ended up with big time depression - started wondering what the point is, don't feel like I'm living anymore just existing and a burden to everyone around me. Have also discovered I don't seem to have any friends any more and when I do occasionally hear from anyone they seem most uncomfortable and eager to get away - almost like a duty visit or call. Bouncing back out of the depression now though - sod em all!!!! Anyway I've been having this really horrid, frightening new symptom - sleep paralysis - it is the worst thing I've suffered so far. I thought my legs giving way was bad enough but at least I could move them. Its happened 3 times now over the last week, I wake up and I can't move at all, I can't even talk, just make a sort of "aaaaaaaaaa" sound but not very loud. I haven't found any mention of this in the 'living with ME' book I bought but when I put 'ME/CFS sleep paralysis' in the search engine a few sites did mention it. I was wondering if anyone else has had this. So far the times it has happened hasn't lasted more than about 5 or ten minutes (although it felt much longer) but it is a truly awful experience and I think its now contributing to my insomnia - I think I'm afraid to sleep in case I wake up paralysed. I haven't spoke to dr about it yet as he's been on holiday (isn't it always the way!!) so wondered what you guys thought.

Anyway hope you are all well, I am working my way through reading all the postings I've missed but theres hundreds and a whole load of new members too :D

Michelle

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13 Replies

  • Posted

    Hi there Michelle smile

    Gosh, I'm so sorry that you have had such a truly awful time of it - I wondered why we hadn't heard from you. Poor you - but hopefully things will start to improve. smile

    Well, maybe your friends have deserted you, but your cyber friends haven't - we are still here for you Michelle, aren't we gang? It's just that others don't understand and some folk just can't cope with illness - it seems they don't know what to do or say.

    It really does sound as if your poor old immume system is at rock bottom -and somehow you really need to give it a boost. Perhaps ask your pharmacist for advice until you can speak to your GP.

    Yes, I have experienced sleep paralysis three times in my life and it is not something I will ever forget - it is terrifying! You can hear every sound, see the room around you but can't move a muscle - I feel I am screaming out for help and yet no sound is coming out. There was a programme about it only this week and a doctor gave an explanation of why it happened - but my muddled brain has forgotten exactly what he said, but I remember thinking it made sense. I can't even remember what programme it is on - maybe someone else saw it and can actually remember what was said.

    Take care Michelle, and don't forget - we are here for you. smile

    Katie xx

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  • Posted

    Hi Michelle

    I am a newbee to this forum, sorry to hear you have not been well :cry:

    As Katie said, your cyber friends are here for you :D

    I have not experienced this but it must be awful :cry:

    Hope you make some sort of recovery :wink:

    Dale xxx

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  • Posted

    I made quite a long post and then the forum went silly again, chucked me out and I lost it.

    Michelle, glad to see you and sorry you are suffering so much.

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  • Posted

    It' s really annoying when it does that Alicia - one of the mods very kindly recently explained how to make a copy of any long posting - can't remember where it was though! My brain is hopeless today - particularly after about 2 hours sleep last night - and I was so tired when I went to bed. sad Sleep is supposed to heal, refresh and renew us - I WISH.

    It'll be dark glasses all day today! sad - and a bad temper!!! :evil:

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  • Posted

    Hi,

    thanks for all your support and responses its really nice to talk with you all again although my pc is really going slow at the moment - bit like my brain :lol:

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  • Posted

    HI GUys

    Welcome back!

    I suffer from something similar to you. I often wake up and my legs are dead or my arms and I cant move them. They feel paralised and a deep dull pain in my body. I cant lift them off the sofa or infact wherever I have fallen asleep!

    Its very scary eh? Please keep us updated with your feedback from your GP

    Donna x

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  • Posted

    Hi Michelle,

    I'm Teedie and a new diagnosis of CFS. You sound as though you are having an awful time of it, but stay with us and take all the support you need from the forum.

    We are all at different levels in this horrible illness. My brain is not working today so can't find the right words in the sentence, but i'm sure you all understand that.

    I did a lot of driving this morning after a late night last night and killtle sleep, got lost into the bargain and it has floored me.

    I have been feeling not too bad lately, thought i was on the mend, but lo and behold it's grabbed me with both hands :!: :cry:

    Teedie

    xx

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  • Posted

    Hi everyone (esp. Michelle) smile

    I've just been browsing through The Telegraph and there is a short article on sleep paralysis. It tells of a night nurse who suffered this quite frequently and describes it as "The brain woke up, but the body was too exhausted to follow suit". I think that probably sums up the situation perfectly - particularly for those with ME.

    Take care

    Katie smile :zzz:

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  • Posted

    Hi, I've also experienced sleep paralysis and I know how scary it is. But everytime I've always been able to move afterwards even if it has taken along time (longest being about one and a half hours I think). So knowing that I'd come out of it helped me. Perhaps you are over doing at the moment? My doctor signed me off work when I told her, that was one and half years ago and after a failed return to work, unfortunatley I'm still off! BUT I haven't suffed the paralysis for about a year now so as frustrating and depressing as it is, I'm following the doctors advice and not going back until my doc and psychotherapist say I'm ready! I'm determined not to get back to that point, and I finally feel I'm moving forwards!! My heart is wih you, but try not to get too stressed about it, as we know that'll just make it worse! Good luck and lots of hugs!

    Nixi

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  • Posted

    Hi All

    Ive too experienced similiar sleep paralise symptons but it was long befor i had M.E, Id semi wake and not be able to move a muscle or even breath, after visiting my doc he told me it isnt that uncommon for ppl to choke on there own tongue whilst sleeping and its the shock that wakes you but only semi consiencly

    But michelle i can tottaly understand you feeling scared to sleep incase of waking with paralise, i too hate trying to go to sleep, its the scariest time for me, i think its the silence that i dont like, have had a few bad experiences when ive just nodded of and i think its when your heart rests and misses a beat its the shock that wakes me and i hate it and end up staying awake, hence my insomnia

    Struggled to explaine so hope you can understand this

    Take care

    Jay xox

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  • Posted

    thanks for all your replies, advice and support. I spoke to a dr about it - not my usual one as he went away for a few weeks and to be honest she didn't take much notice and said it was common and nothing to worry about :!: I'm sure you can imagine how reassuring that was :evil: Also suggested it may be cos my sleep pattern is so messed up and to not nap in the day - tried to point out that I only sleep in the day when I cannot stay awake any longer, if I try and fight it my body gets so weak I end up with my legs giving way or passing out!!! So basically I left the surgery feeling more wound up than when I arrived - it would appear that my sleep paralysis is 1) normal and 2) the result of being a general lazy ********** for sleeping during the day.

    Anyway my usual doctor is back now and I have a telephone appointment with him tomorrow so I'll see how I get on there, I'll keep you all posted - now that the system is working again

    Take care

    Michelle x

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  • Posted

    hi there i know im super late to this and i somehow stumbled across this but i havnt seen much about cfs and sleep paralysis. I'm sorry to hear you are having such a rough time with this terrible illness, ive also struggled with cfs and sleep paralysis. ive been sick for over a year now and have had over 200 sleep paralysis sessions in ny life and im only 22. along with terrifying dark hallucinations. i was wondering how you are going now, is it getting better ?

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  • Posted

    I'm late to this too but wanted to share my experience. I have been experiencing sleep paralysis since childhood, many years before my official diagnosis of ME. The worst was feeling unable to escape the hallucinations that always accompanied an episode. I continued to suffer from this relatively often until my mid 20s, when it tapered off to maybe once or twice a year. I am in my early 40s now and have an episode every few years.

    I think with the strong link between sleep disorders and ME it is unsurprising to see some of us struggle with sleep paralysis. I have always wondered if, given I have had sleep issues virtually my entire life, I was somehow better built to end up with ME in the long run. In other words, perhaps sleep disorders mean someone is predisposed to later have ME.

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