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What is this 'Fog' that Fibro sufferers talk about?

reflective-peace profile image
41 Replies

My daughter has times when she feels light headed, like she's going to faint. It can sometimes last for hours, and she has to stay lying down. She also has something her mental health team call a stress disorder, where she falls to the ground in a non epileptic type fit if she gets very stressed or frightened. She also has moments when she is clearly 'not in the room' and is unaware of this happening until she realises that she has missed some of the conversation. Is this the same thing?

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reflective-peace profile image
reflective-peace
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41 Replies

Hello,

Sorry to hear that your daughter is suffering with this as well as the other stress disorder you describe.

For me, Fibro fog is where I am quite forgetful, can't think of a word or experience the 'not in the room' sensation that you describe.

I have not experience feeling light headed with it or that I need to lie down so I am not sure about this but everyone experiences symptoms differently so it will be interesting to hear what other members of the site say.

haribo36 profile image
haribo36

Hi there,for me the fibro fog is where your brain/mind feels foggy like as if you can't think clearly about anything or can't remember stuff like where you put things,what you need to do for the day,like appointments or phone calls,even writing a shopping list can be hard at times! So I would say that it is not the same thing as what you are describing x

in reply toharibo36

Hello Haribo how you doing? I missed seeing you around, so welcome back hugs sue

fenbadger profile image
fenbadger

Mdaisy's probably the best to answer this one. It varies a bit and what you describe is not my understanding of Fibro Fog.

The fit seems to be a coping mechanism and apart from hitting head on a sharp or hard object, I would not worry too much to be honest, but that's me. Floating and disconnected I can feel with and it seems to be another kind of switching off. That's part of my fog. The next one is seeming to sleep for a few minutes at a time. I proved that to myself by listening to radio plays and finding huge gaps. Top for me is memory tricks not dissimilar to "comic" dementia. I'll get up to re heat my shoulder pad and come back with a coffee.

If in any doubt it's essential to consult a GP. I just had a similar conversation with my mother who had an angina attack and was told by a paramedic in no uncertain terms how flawed her thinking was. I'm not saying yours is, but the medical profession tends to prefer to come out unnecessarily than too late if you know what I mean.

I really sympathise as stress can trigger lots of things that may even disguise another condition.

Gentle hugs.

in reply tofenbadger

Hi Paul I always forget my coffee after I made it. It`is a family joke and if there is some one around they will bring it in to me. But I usually get cold coffee when I realise I am thirsty and go in to make a cup of coffee :)

fenbadger profile image
fenbadger in reply to

The hit "Matthew and Sons" from the 60s contained something about a cup of cold coffee and a piece of cake. I know you're too young for that

Bit of a theme here with Ken & Sian & cake :P :P

in reply tofenbadger

Oh paul you say the nicest things :)

fenbadger profile image
fenbadger in reply to

I speak only the truth :)

in reply tofenbadger

Oi! careful Mr Badger or I'll pinch the crunch creams :D

fenbadger profile image
fenbadger in reply to

:( :P

in reply to

Happens to me every day at least 2 if not 3 times a day :o

It's a standing joke in my house now!!!

fenbadger profile image
fenbadger in reply to

'tis in mine too, and I'm the only one to talk to :P

in reply to

There you go! first cup gone cold.............. it was beside me too duh! LOL

in reply to

And mine too busy playing candy crush. Wish me luck I am going to try to do some pruning out back. :O

in reply to

Good luck don't too much hunny :) xx

I have fibromyalgia as well as a mild form of epilepsy. What you describe with fallen down, missing bits of conversation and just obviously not there is exactly how I was before being diagnosed with epilepsy. I have never had fits it is what they called myoclonic jerking. Maybe you need to look at this being more the problem than fibro.

Julie63 profile image
Julie63

Hiya, my fog makes me talk gibberish while I forget simple words, which is embarassing in front of people I dont know. I sometimes go 'inwards' into myself if stressed or tired & i miss chunks of conversation. I really feel for u & ur daughter, sounds like shes having a really tough time. Lots of loving, healing, positive thoughts to u both. Big, Gentle, Hugs, Julie xxx

in reply toJulie63

Hi Julie you're not alone with gibberish, I tend to not go anywhere near strangers as I know I won't manage the sentences. My mum used to get annoyed when I wouldn't answer the phone until I sat and explained that I couldn't have held a conversation :o I just switch off too :)

:) xxxsianxxx :)

fenbadger profile image
fenbadger in reply to

You don't do too badly on here, Pot :P

If you want gibberish I predict plenty for the next virtual event :P

in reply tofenbadger

and there's a reason why you're kettle!! :p

fenbadger profile image
fenbadger in reply to

:P :P :P :P

Does fibro cause my sides to ache or is it visiting this site that does it?

in reply tofenbadger

Speaking from experience I would say possibly both due to 'cause and effect'

:D :D :D

Are you ok today? :)

fenbadger profile image
fenbadger in reply to

Kind of fine. Physical health ok. Just learned my colleagues at work still haven't worked out I'm ill despite 2 weeks signed off and 2 visits to occy health , more to come! Hey guys, wake up!

Also waiting in for a phone call that doesn't come so a bit frustrated. How's you? x

in reply tofenbadger

Bless you kettle sounds like you need cheering up :)

I've just woken up from a tramasnooze :D no change there then! :p

fenbadger profile image
fenbadger in reply to

Hmm, just going to work. Can I have some lavender fluffies for when I return? :O

in reply tofenbadger

Of course they're going to help you at work too to keep calm my friend. When you get home there''' be some smiling giggling fluffies to cheer you up :) xx

fenbadger profile image
fenbadger in reply to

Many thanks. Feeling better already :P

phlebo123 profile image
phlebo123

Hi

For me "fibro fog" is : 1) forgetting mid sentence what I am saying

2) forgetting the name of every day items or family/friends

3) going into a room and forgetting what I was supposed to be doing

4) putting things in the wrong places... e.g. putting the tv remote control in the fridge

5) going to the shops and forgetting what I was supposed to buy

6) poor concentration, have to read a sentence many times over before grasping what it says

I often find that the "fog" is worse when under stress.

Your daughter falling to the floor is perhaps her way of "dealing with" stressful situations... I find that under stress I either remove myself from the situation e.g. leave the room or "clam up" and say nothing.

phlebo123 has just described what fobro fog is like for me. In stressfull situations I am much worse and the longer it goes on the worse it gets until I reach a point where I switch off . It`s like going to sleep while still standing or sitting up. Coming out off it is like waking in an unfamiliar place and I find myself staring at a wall .and not knowing where I am. I then need to look around and sort of start again where I left off but with less clutter in my mind, Like pressing the reset button

I try to avoid these situations or walk away but you can`t walk away from an appointment with doc or neurologist but they just sit and wait until I am back

I do also suffer from dizzy, light headed, balance up the shoot days when It is really bad I feel as though I am on the waltzers at the fair and have got to the point of can`t take any more. Then I have to lie down but even lying down I feel like I am going to pass out. Luckily It only lasts a few hours. I hope this helps to answere some of your questions sue

Shazzzy profile image
Shazzzy

Hi there, i tend to agree with Carole it sounds more like a mild form of epilepsy. Fibrofog is more a state of semi permanent mental confusion. Like a kind of mini alzheimers that comes and goes. I think your daughter needs to explain this to her .doctor and get a diagnosis, sometimes things can all get lumped in together when in fact they are seperate illnesses. Good luck

Mdaisy profile image
Mdaisy

Dear Reflective-Peace,

From the symptoms you are describing it sounds like a form of Dysautonomia most likely associated with her Fibro. Here's a passage from the website about Dysautonomia;

Autonomic Dysfunction (sometimes called Dysautonomia) of some kind is common with Fibro: this simply means that the Autonomic Nervous System (ANS) isn't working properly.1 The ANS keeps various factors in your body at normal levels, including heart rate, blood pressure, perspiration and respiration. Autonomic Dysfunction with Fibro can include not being able to properly regulate your temperature - people with Fibro are often either too hot or too cold - and fainting. (Lindsey Middlemiss 2009)

fibroaction.org/Pages/What-...

There are many forms of this and post pregnancy secondary to Fibro I believe I may have Postural Orthostatic Tachycardia Syndrome (PoTS) which has similar symptoms to what you are describing although due to your mentioned triggers it may also be Reflex Anoxic Seizures (RAS). My daughter has RAS in relation to stress, excitement, falls etc, she also goes very white at the time although she is slowly growing out of them. From my experience it sounds like you are describing the same thing that happens to my daughter.

Obviously, I am not a doctor but I thought it was worth mentioning and also here is the STARS charity where you'll find the best information about these conditions, if after speaking with your Healthcare Professional any diagnosis of PoTS or RAS is made. Here's the link;

stars.org.uk/

Just to quickly further explain what we call 'Fibro Fog' , here's another passage from the website;

Cognitive dysfunction is a common problem with Fibro and is nicknamed "Fibro-fog". This can include difficulty in understanding something, difficulty in making decisions, memory loss, problems with concentration, difficulties in speaking coherently and remembering words and problems with typing or writing (Lindsey Middlemiss 2009)

fibroaction.org/Pages/What-...

I would consider speaking with your GP about these symptoms and please let us know the outcome

Hope this helps

Emma :)

FibroAction Administrator

fenbadger profile image
fenbadger in reply toMdaisy

Thanks Emma, I knew you'd come through. You just saved me formatting a couple of paragraphs. :)

It's horrid, isn't it.

CD gets associated with loads of other stuff and can easily fog the issue. (Pun unintended but entirely accurate) :)

reflective-peace profile image
reflective-peace in reply toMdaisy

Hi Emma,

Thanks so much for that, I will look up all the links you have sent as I am keen to learn as much as I can so that I can help my daughter to live with this debilitating condition.

Regards, Linda

TheAuthor profile image
TheAuthor

Hi reflective-peace

I sincerely hope that both you and your daughter are feeling as well as you possibly can be today? I am so sorry to read that your daughter is having a problem with Fibro fog.

I suffer with Fibro fog and it really isn't pleasant. It is akin to 'the lights are on but nobody's home' type of syndrome. I can't remember names, I forget what I am saying, I lose time, I feel very weak and my legs won't hold me up.

I want to wish your daughter all the best with this and wish all the best with understanding how it all works. You are clearly a wonderful loving mum that anyone would be proud of, as you are clearly concerned by what is happening to her.

All my hopes and dreams for you and your daughter

Ken x

agtf1 profile image
agtf1

Hi, I experience Fibro fog as difficulty thinking clearly, remembering what I was doing/saying, saying wrong words, being unable to do simple maths, etc.

I do experience severe light headedness and feinting which for me is due to low blood pressure.

What you describe does not sound like Fibro fog and I would recommend that your daughter discusses this with her GP in case there is something else going on other than Fibro - for which there may be a treatment. I hope you get some answers and help soon xxx

Ginsing profile image
Ginsing

Morning reflective peace, I see you have had lots of answers but I would just say it does not sound like Fibro and I would advise you to go and talk to her specialist about it. So please do go back to them !

Take care xgins

Hi reflective-peace

I think you've been given some marvelous advice about what fibro fog is all about so I won't describe that again for you. It must be really exhausting and worrying for you.

I agree with Emma on this one, when I first read your post it didn't sound like you were describing fibro fog. I have an ANS problem not sure which yet!! as we haven't gone down that avenue yet.

I think a chat with your daughter's GP could be very beneficial as he/she can look into what's causing it. I believe Mr Badger is also correct about stress it masks things and can also make other things stand out in front.

I am sending fluffie hugs to you both to help soothe the symptoms and hope things begin to improve for you and your daughter soon :)

:) xxxsianxxx :)

Huskybike profile image
Huskybike

I get the feeling like I've had a drink. I wish, also feel like I can do anything... Scary... I forget stuff it toast in toaster set it on fire twice... Time to throw out the toaster lol x sorry to hear about your daughter I would discuss this with your doctor god bless x

fibro profile image
fibro

Hi Reflective-Peace,

First i would definitely speak with the doctor. As many others have describes the forgetfulness fog, and yes notes and notebooks all over the place really help, but some of the things you describe are like i have had when hit by panic attacks,

I also have a friend, he doesn't have Fibro, but has a condition, a name that escapes me sorry, but he cannot stand still for too long otherwise he faints. I wish i knew the name of it as i could cross check any other symptoms.

Anything new should always be reported to the GP just in case it isnt fibro,

I hoe she is ok though xx

rari82 profile image
rari82

Hi i have exactly the same sympton sometime my body over heats and if i don't get cooled of straight away i faint. I went to my gp who didn't know what was causing the hot flushes and faint episode i ask if he though it was connected to fobro and he said he doesn't think so. I so so many different doctor and they all couldn't tell me why, at first i thought it was menepose but they said u can get menepose at 30 they just told me to keep a diary. I am scaredd because i got small kids and its happened a few time when i a home alone with them where i faint and wen i regain conscious i can't move my body whole feel paralysed.

reflective-peace profile image
reflective-peace

Thank you all for the wonderful response to my question and all the very useful information. I feel so well supported here :)

It sounds to me like my daughter has had the 'fibro fog' long before fibro was diagnosed. She used to have terrible trouble at secondary school with concentrating and remembering things from one lesson to the next. She used to get very upset (understandably) and regularly told me she thought she must be really stupid :( She didn't finish her GCSE's until she was 20, and that was with home tutoring because she couldn't cope at school. Originally, she was diagnosed with Juvenile Arthritis, but her symptoms where never a good fit for that. It's taken 10 years to finally get a diagnosis that does fit, so now we are on another learning curve. Regarding the fits, we have already spoken to many doctors about them and she has had lots of tests. No cause was found and no treatment offered, other than "don't get stressed". It sounds as though it's not a part of Fibro though, thanks again for all your brilliant advice.

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