Fibromyalgia Action UK
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frightening symptoms

I am wondering if anyone else gets the following symptoms, I am diagnosed with ME and Fibro and have suffered with it for about 10 years but it has got progressively worse over the years and I am now very unwell and manage to do very very little on a day to day basis, if I get dressed and make a few brews I have achieved something.

I am currently experiencing a bout of the following, it comes and goes usually but when it hits it can last several weeks and it really frightens me as I don't understand it and cannot shake it.

I am not sure how to word it that you will understand my friend says she experiences the same thing and she also gets frightened by it she is also a sufferer

I feel as though I am not in my body, as though I am distant from everything looking down, everything seems surreal, I can be lay in bed cuddling my husband saying goodnight and I feel like i am physically a long distance from him open my eyes and he is a couple of inches away from me, it startles me and any fright or jump makes my body feel as though every cell is vibrating very rapidly, I feel dizzy and disorientated.

Everything is surreal, my bedroom feels bigger than it actually is, as though the walls have moved up and out making it seem empty and hollow, this feeling is with me all day and night but is a t its worst when I lie down.

I am feeling I am really snappy and short tempered as I cannot take anything in people a re saying to me and I can''t actually manage to do anything which frustrates me, I try and this feeling of detachment increases aand I drift as though I am living in a different realm to everyone else and I cannot cross the barrier back to be with everyone else

I feel sick to my core, a deep nausea that nothing shifts and headachey and absolutely d rained as though someone removed my batteries.

I am too exhausted to do anything but I am not wanting to go to bed as I cannot ope with these strange feelings, it is so hard to explain but I feel light headed an disorientated when its happening.

I am unsure if it is some kind of anxiety but I do not feel anxious other than when these symptoms flare, I cant say that my mind is stressing about anything specific or that anything psychological ha triggered it, I know I over did things this last week and fear this is what has caused it as it seems to happen when I am most run down and most unwell, The pain intensifies but I cant even tell you where the pain is, it will be say in my lower back, but I feel so distant and detached from it, it is just a sensation somewhere in the general direction of my body, same if I get an itchy patch I cant scratch it a I cant tell you where it is, its just a general discomfort feeling.

I have corrected more typing mistakes than words it seems, as my body isnt where I think it is and am just typing crap so excuse me if this doesnt make any sense

13 Replies

Morning itoo have m.e fybro for long time now.

I get this a awful lot wot your feeling now.i got told sp dont panoic it was a silent seizure.

They are very scary and leave you ferling drained and,disorientated.

I have lesions on one side of my brain.

This is wot ive been told.

Me and fellla were out shopping and i couldnt take the noise and all the people in the shop.

I freaked head was spinning etc.

Get it checked out.but try try and,calm down a little hun.xx


hi .. I am a counsellor in my day job and it sounds like a mixure of anxiety and being over tired ( NOT AN OFFICAL DIAGNOSIS ..we not meet)

however please check out the Gp its always worth it incase the medication your on and you may like to ask about mindfulness its a nice relaxation that can help .. it can also help with pain I have used it with a few clients with FMS..

take care gentle dslexic hugs


I had something like this totally drained couldn't focus people were talking to me and they made no sense... I lay on the settee couldn't move felt I was trying to fight through treacle I had to phone my mom on mobile cos I couldnt remember her home phone number... Turned out it was the new tablets I had been taking .... Don't know if you have just had some meds changed... I am now in bed waiting for drs tomorrow when I tell him yet again had horrible reaction to tablets. Unfortunately to put it bluntly if tablets don't agree with me I also spend the days I am on them on the toilet...maybe the dr can give you something for it or change a tablet that may be causing it .. Hope you feel better eventually .. I won't say soon as with fibro nothing ever seems soon xx


Hi ,it sounds like depersalization wich is all part of anxiety , it cant harm you but it is scary. The more you fear it the worse it will be . I had bad depression and anxiety last summer and one of the things i had sounds like what you have now xxx


ooh thankyou! i thought is was just me!

i get this occasionally. not at home but if im out - more often in a shop. i feel light and floaty and the floor will be moving up and down like on a boat or fairground ride. i just grab onto whoever im with usually my hubby and ask him - is the floor wobbly / moving?

totally bizarre.



Hi Carrie, I was wondering if you have been diagnosed with anxiety and stress as these are similar to the symptoms I suffered before I was diagnosed. When you feel like this it is easy to panic too which then makes everything feel worse. I have had a reduction of these symptoms since I started on antidepressants although they are inclined to creeep back on occasions. I also find relaxation techniques help along with complementary therapies such as reflexology. I too didn't think I was stressed but now I have a better understanding of my illness I realise I was. I also felt detached from the world around me and as if I was looking down on things from another planet. I think maybe it is the way our bodies react to fibro that makes us have all these strange things happen too.

Why dont you pop to your GP and have a chat with them, maybe they can suggest something that will help if you are not already having the relevant treatment. Am happy for you to PM me if you want to talk about this in more depth. Take care and feel better soon, love Angela xx


Thank you all so very much for your responses, I dont have a neuro appointment until september so I will have to wait until then but I may be able to speak to my GP about it, I have an MRI scan due a week tomorrow as they found signs of MS in 2005 and never followed it up so I asked for a scan to check everything is clear so may ask my GP when i go and ask for the results of those, I expepct the scan to be clear, they never do find any reason for any of my troubles, it drives me mad. I think it is quite probably it is some kind of anxiety state as I am exhausted and will see what I can do about it, it has e ased a llittle just now but I still feel sort of distant.

I really hate my body and all the stunts it pulls it drives me crazy, my medication hasnt changed but I am on a high dose of morphine, so it is possible that sometimes interferes with thigs, but because of my various and numerous health issues I cant manage without them, finding med I can tolerate is a challeenge so dont like the idea of anti depressants at all but I want tog et rid of this feelin


Hi Carrie, although the symptoms you describe sound like anxiety, you seem pretty convinced you don't feel anxious so I second Lexie's advice to get to your GP about it is very sound.

The only time I have experienced anything similar is when I have been coming off one medication and this was a documented effect of 'discontinuation syndrome'. This was very frightening. You don't mention any change in medication either though.

Good luck at the docs.




Looks like you have all good advice here.

I get this at times but not for as long as you are saying. My life is a lot less busy though as i live alone. My episodes are always after over doing things and with lots having to be sorted both by writing and thinking. I think our body and mind get overwhelmed with the constant effort we need each day just to survive with this. Good luck and please keep us posted xx


Hiya. I get some of the strange feelings you get, the 'out of body' experiences. It is scary at times, and I tend to get dizzy and nauseous with it. It could be anxiety but I've just started on gabapentin so perhaps it might be that too. Its something I'm going to speak to the doctor about it though. Hope it helps.xx


Sounds a little like the sensations I've had during TIA's (mini-strokes), but there again it could just be a middle ear infection. You need to talk to your GP and get him/her doing some detective work.

Julie x


Sometimes the meds that we take can make us feel like you describe. One of the first meds I was prescribed three years ago made me feel like there were two of me. I literally could jump in and out of each person. It was the craziest feeling I have ever had. I could sit at a table next to me! When I explained this to my Consultant he told me it was quite common to feel disorientated and to feel displaced. It worried me so much I came off the meds and he prescribed me something different. What I am trying to say is that it doesn't necessarily mean something very serious, but please mention how you are feeling to your Doctor as they should be aware of how you are reacting to your meds etc., also how anxious etc you are feeling. I hope you feel better soon.


Thank you all, my meds havent changed since last november, but I am not saying it is not possible the meds are not causing part of it, from what I understand it is called depersonalisation and derealisation, and is linked to anxiety, so I need to stop worrying about it and go with the flow, I am feeling very unwell this morning and it is being a bit of a swine again, so I suspect it is if |I feel anxious about feeling unwell, albeit not consciously it gets bad. it is certainly not very nice but I have an appointment with the doc on thursday about something else so will mention it then


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