What percentage approximately would y... - Fibromyalgia Acti...
What percentage approximately would you say cognitive dysfunction (Fibro Fog) affects you personally per week?
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Hi Mdaisy, please tell me how you cope with all the pain,any advice appreciated x❤️
Thanks for your comment - I think this would be better put on the community to ask everyone as you'll get more input and also a variety of ways people cope with the pain. Do you feel able to write a post as you might find online support by being engaged with the whole community? 
i only really suffer from fibro fog during the winter months ?, i am usually fine during the summer
I see so as Fibro is worse in winter for you that’s when it’s worse. For me it is when fatigued from either physical or mental exhaustion/sensory overload all year but happens rarely mostly if I push myself too much (Push &Crash). I listen to my body and it definitely lessening
I'm the same ! Same triggers that is... I'm not the best at listening to my body .... I try to but I'm very guilty of pushing too hard or not wanting to give in ... or feeling guilty that my child is missing out ... or that people who say they understand , won't when I say I can't do something.oh gosh sorry I went off on a rambling rant 🙈
Thanks for your reply to Impieroni. It's really helpful. I only started getting fibro fog 18months ago after my mother died and I'm still trying to rebalance my lifestyle.
I still work and I tend to use skills that I have for my dyslexia to help me focus it don’t always work but I find it helps me get through
Thank you will dox❤️
I'm always suffering from some form of fibro fog what with having ongoing endometriosis pain even tho I had a full hysterectomy at the age of 41 it still keeps growing back, so going through radical menopause , having chronic fatigue syndrome and fibromyalgia my brain is like a load of mush 😟
Mine too. Every single day I'm in constant fibro fog.its horrendous.
It's awful isn't it what our body's do to us, especially when no one can really see it or understand it unless you're going through it yourself. I forgot the amount of times people have told me well you look ok. Grrrrr😪😖😖😖😖😖
If I have someone say that to me one more time... I might just have to hurt them! It really affect my anxiety disorder...then, I shut myself in as I don’t want to hear the comments. Many say to my husband... where is Michele? In my defense...he says, she isn't feeling well. On times ... I don’t know that even he understands. He is getting better at it tho’.
50-70% much influenced by severe sleep deprivation from painsomnia.
I didn’t vote as have brain fog, but whether ‘fibro’ or ‘hypothyroid’ can’t tell...tend to think hypo. Most noticeable as complete forgetfulness of everyday words, or wrong ones come out of my mouth! Also lability...laughing when not noticeably happy.
Hi Mdaisy, I've been coping with fibro for 2yrs, the fibro fog is a total pain especially when someone asks you a question and you have absolutely no idea how to answer, I even forgot how to spell my own name.
The first year all I can remember is the pain I know I must have done things so I have to ask my daughter. I'm still struggling with accepting that I have fibromyalgia. What would you suggest I do/try to come to terms with this. P.s I'm house bound and only go out for dentist and doctor appointments. Thanks for reading looking forward to what you can suggest. 😊
Oh poor you. That is hideous. This is a hideous illness. I have been suffering 8 yrs with diagnosis only 18 months ago. I too have horrendous fibro fog , terrible cognitive problems and was tested for ms my neurologist said that there was 2 types displayed rheumatology or neurology. One being mostly joint pain and the other cognitive dysfunction. When the pain is controlled fibro is easier to live with, manageable , however when you have neurology side it's like a double whammy as cognitive dysfunction is daily occurrence and in my case is not controlled by meds and I have to live with it. It effects my left side of my body so sometimes I have drooping of my foot and my whole left side feels heavy and I drop things. Pain management has helped me and its important to talk openly about how you feel. Let people in to assist in helping you to cope with the diagnosis. Forums are a good way to learn and share. I think knowledge is power so I read a lot about our condition to pick up tips to assist my acceptance. Hope this assists. Best wishes and hugs. Xx
Thanks so much for your reply it's also affecting my left hand side, and I have a huge lump on my left thigh that swells when my pain is bad.
I'm on a number of meds pregablin, dihydrocodeine, diazapam (only use that when pain is very bad) I've had afew doctors tell me to cheer up! Very annoying because I'm not depressed. I'm also totally housebound been to a neurologist tested for ms and moter neauron, he thought it possible I could of had a stroke because it happened over night. I will take your advice and talk about a way forward seems to be 1 step forward 5 steps back at times. Again I thank you for your reply. Best wishes xxxx
I completely get it,your symptoms sound very much like mine. It is no easy road. I'm still working but only just. In fact I don't know how I do it. People have asked me if I have had a slight stroke. It's just bloody terrible.
I get it it’s really awful in a mid sentence I can’t remember instructions.
I had to ask my husband! He said between 20-30% but I’m definitely improved since my Depo-Medrone injection last week. I suppose a lot depends on your medication too as since my jab, I’ve needed less morphine, stopped Diazepam altogether & halved my Amitriptyline! In other words, how can you tell how much is fibro fog & how much is medication side effects? I for one would not stop my pain meds to find out but everyone is different. It would be interesting to know how many people with fibro cannot tolerate loud noise or over stimulation of surroundings (eg. supermarkets)?
Nic xx
Most people cannot stand the loud noises of say the Mall where everyone is talking louder and the sounds echo off the walls, children screaming, strong smells and perfumes, I dodge these places like the plague or go very early when all is quieter. It helps to wear earphones to either blot out noise or listen to relaxing music. This tends to drain your energy as you try to separate noises etc so I tend to imagine I am walking in a ball of light and nothing can penetrate it, you are not alone we Fibro's tend to walk between worlds that only someone with Fibro would understand.
please get rid of your name The Temple of DOOM sounds so heavy how about the TEMPLE of SUNSHINE or Temple of STARS you deserve a happier name to lift you up. I hope you don't feel insulted but DOOM seems so final. My name FINDHORN comes from a small spiritual place in the north of Scotland. Would anyone else like to share the reason for their Fibro name.
Hi myfindhorn. I chose my fibro name as I've always wanted to be called Eleanor which is my middle name rather than my first name which I've never liked but didn't feel I cold upset my parents by changing.
Eleanor was my mother's name and my grandmother's and runs back through the family. My daughter and grandaughter have it as their middle names and I hope the tradition will continue. My goddaughter , no relation is also an Eleanor. I just love the name.
I struggle with loud noises also, and I get sensory overload when I'm in a crowd of people. When I'm in the supermarket, I find that I can't function properly, is almost like my brain shuts down. I never go shopping on my own anymore, I'm scared that I will panic. If I'm in a really noisy place and someone is talking to me, I can't separate what they are saying from the noise around us, and I struggle to understand what I'm being told. Holding a conversation is impossible in this situation, I feel detached from the world, and I feel like I'm in a different reality to everyone else.
Hi I was just reading afew of the comments, and I also can't be in crowded places and I have ear defenders because of noise. I understand what you mean about taking in information I just can't seem to understand what people are saying, this illness is terrible and all who suffer seem to be ignored or we are lieing about it. Xx
Me I cant stand too much noise or bright light its unbearable sometimes.
hi add arachnoiditis toit yiu try to stay away from noise even turh telldown be carefull with meds as you might think you dont need them but belive me ou do
I fight fog everyday, however I am so lucky that I have friends around me that are fantastic at playing charades for I am forever forgetting words or names. I survive because survive is the only word to describe fibro fog. The pain I get I use to my benefit for eg, I have convinced myself that by moving and doing things I at least get some comfort in knowing I have achieved something. A person can lie or sit and do nothing so you have achieved nothing, go for a walk, do the garden, clean the kitchen, everyday say today I will clean that cupboard out and when it is done write it down in a diary like for eg, I cleaned the cupboard out and found a old picture of myself on the beach or I found a picture of myself and family, I put it in a album and as I was dusting and cleaning the shelves there in the corner was a wee box full of dried petals and I remembered the day the kids gave me a box of love. It may take all day to clear that cupboard out but everytime you remember something it is a minute you have remembered a memory and forgot your pain. It is good to rise up and try to stretch as far as you can, when I am filling the washing machine I stand back a wee bit so I have to stretch to put the clothes in, everything you do incorporate a exercise. If you are washing the dishes keep a photo album in front of you and just pick a picture and remember that day it was taken. Try if you can do a wee bit of gardening or keep potted plants and talk to them as you water them and tidy them up, plant seeds or herbs and watch them grow. Remember in the words of Sir Ken Dodd, A OUNCE OF HELP IS WORTH A TON OF PITY. Every person who suffers from Fibro usually suffers from another condition so every fibro person is different. We all have to find our way out the maze and like it or lump it we all have to cope, we have to learn other ways of doing things we have to do wee jobs before they become big ones. It is a lot harder for someone who has children as children have to be taken care of, and nobody wants to rely on their child to look after them as they need their childhood. A parent who depends on their child wholly will not only deprive that child of a social life with children their own age but will soon find out their child will become as ill as they are. Fibro whether we like it or not can swallow up not only your life put also of people around you, and you will hear Fibro people complain nobody visits them anymore or they run in do what they have to do and leave. A Fibro life is a personal battle of winning and stepping back now and then. Everyday find something in your life that you are thankful for, think of songs you sang and concentrate on the words and meanings, watch the birds play, anything that takes your mind off Fibro means you are winning. Knit sew paint means you have forgot your pain. It is so easy to fall into the Oh poor me syndrome so think about who is worse off, the parents watching their child die, a person with a terminal illness who wants to live longer but can't, a person who has had a limb amputated and now has to change their whole life will they see it as a challenge or will they let it defeat them. Fibro can be your challenge or your prison that is your choice and yours only so, will you have a lonely life or a life full of colourful challenges your choice to get out of the fibro fog for every minute you focus and see clearly you are winning. I personally refuse to allow fibro to take over my life and steal my minute hours and days from me, If I get to make my bed, take a shower or cook a meal it is time that I won and not Fibro. Meditation is wonderful but so many people say to me that they cannot concentrate and clear their minds, try taking a walk down memory lane, to do that you need to fill your mind with memories, when washing the dishes don't hurry take your time to see the bubbles and the rainbow colours, watch the water move, feel the water flowing over your fingers and hands, wash your plates in circular movements slowly and feel your body relax letting your shoulders drop, play soft music always in the background to relax and play your favorite band that you loved when growing up to give you energy, mine was the ( The Shadows ) instrumental and full of energy. I wish you all the best of luck in finding your way out of the maze and into the sunshine.
Myfindhorn, what a great coping attitude you have. You’re so right about the small things. I spend ages on little jobs. The thing to remember is don’t overload (I’m a fine one to talk!) yourself & just do one thing at a time. It’s amazing how much stretching you can do whilst cleaning your teeth! 🙂 xx
I lose the plot often. Memory impaired and conversations get lost in thingy and what its name as words are not coming.
I find it really frustrating when l forget mid sentence or stand there stuttering, it makes me really anxious.
I totally get what your saying... it was even worse when I was working. Know if I lose concentration... I will just say... sorry, I have fibro brain... it couldn’t have been important or I would remember...then laugh it off. If it is a friend I say that it is so frustrating.
Hi mdaisy I struggle most days with fibro fog all long with the rest , I get frustrated as I forget so much and dealing with finances appointments is a absolute nightmare even speaking to people on the phone I get so down as I know I need help with what use to be easier with dealing with things would be great if there is any help out there or if others go thru the same things x
its wurse when you forget yuo over spend on visa
Thank you. Any questions asked will hopefully bring answers sooner!
I don’t know if it’s fibro, thyroid or I’m just ditzy 🤔 I put 20/40% but I have days when even I question what I’m doing never mind saying...... I do laugh it off and make a joke out of it though (my defence mechanism)
Everyday all day
Seems there all the time now, to a greater or lesser degree, as does the fibro (low, medium, or flare)
My brain is dreadful!! I've noticed a big deterioration in my short term and sometimes medium term memory and it worries me! A few years ago I could listen to my fave songs-tell you the title after a few bars of the intro, sing along and know all the lyrics. Now I cant recall song names for ages often until I hear the chorus and I cant remember lyrics. I got into Astronomy 4 years ago and spent time outside learning the night sky, constellations and studying Astronomy. Now as I've been too ill to get out for over 12 months I seem to have forgotten it all!
The only positive is that since I've been doing a Ketogenic diet my concentration has improved greatly and I can be on the computer longer.
I'm clumsy.stupid.struggle open/close.fasten etc
Just to say thanks
As a general rule I don't get fibro fog. I get it the next day after a bad flareup though. It feels like after I migraine has gone. I ask OH not to ask me anything complicated, like my name!
Hermes123.
Hi Mdaisy since coming of Butec I no longer get Fibro Fog ! When on it I thought I was loosing my mind, because I could not think clearly at all, I would go to my Art sessions on a Friday morning, get out my art paper pencils and paint and just sit and look at them for two hours.
In the same period of time I could no longer write poetry, since coming off Butec I still have the pain as before but I have my mind back. I have known for years one is never going to loose the pain, but the things I lost though Butec were the things that help me ope with pain. Hermes.
I work and most days I struggle but I also have RA which is as bad I rely on work mate and tenants as unless it's life or death it's gone. When in lots of pain memory shot. Like others on here I struggle with words. It's embarrassing but now I just laugh and put it down to age. I use association memory say sandwich I might say bread then eventually I get it
I have to really concentrate permanently when doing even the simplest of tasks. If I lose concentration, - devastation ! This really tires me out and wears me down but I am aware of this and have had to attempt to get used to it. I find myself carrying out the most silly of things! The pain also is wearing I find it difficult to accept why I cannot do the things I have always done? I had not noticed the 'fog' only being prominent in the winter? Lack of useful sleep also is a negative!
Percentage is tricky. I struggle for right words, when otherwise, I'm good at words. They get lost between brain and mouth. Drives me crazy. I have times and days when it feels impossible to spit out a sentence. I have times when I can't concentrate. Have to give up trying. Is it overwhelm? Maybe?
I very forgetful drives my husband mad.Sick of sleepless nights feel like hell the next day.Getting a lot of pain in my left hip,knee,ankle and foot it’s agony .Feet and hands burn all night getting really depressed but then seeing my little girl puts a smile on my face in the morning so full of energy it makes going on a must no matter what.
I have good days and bad days. Got a red book in which I make a daily schedule as a bullet-point list, in which I try to cross out things as I do them. I try to keep important things in the same place so that I don't use them. This helps a little, but sometimes my brain just doesn't seem to work, full stop.
Hi Mdaisy I'm new here,get fibro fog on and off I couldn't remember my dog's name the other day, thankfully it came to me later!!!
Emma, a difficult one to answer in terms as simple as percentages as I think we all become aclimatised to the muddy confusion,, it tends to go up and down with myself but I can't pin it down to any one thing or set of things that exacerbates or relieves it.
It's is always there with me,,, sometimes it can be overwhelming. Other times,, well just there, copeable, keeping ones life simple helps me cope with it.
Often I can barely string two words together without geting them muddled,, even on paper.
I present the same as the dementia service users that I work with some days. They all laugh and tell me it's catching. I have to drink plenty of fluids ( not alcohol) throughout the day, dehydration makes my cognitive function really bad. Also too much noise, hustle and bustle feels overwhelming, my brain can't seem to cope.
TBH it fluctuates so much, I don’t know. Apparently, I am worst in our Support Group, out of approximately total,of 40.
Having suffered with fibromyalgia for 25+ years I have found the fibromyalgia fog /memory loss has got progressively worse over the last 5 more so in the last 2 years following 2 very nasty stints of sepsis following knee replacement surgery. ( poor immune systems don’t help) but short term memory is becoming a major problem.
I suffer so many of the effects of fibromyalgia but this and severe chronic pain have to be top of the list as it effects so much of everyday life or existence more than life.
Love to you all xx
I don't get it any more
Reading all these replies has been so informative. Yes I get fog the day after a heavy day. We went to a family funeral 2 days ago then yesterday I went to buy some fabric for my quilt project. The assistant asked me a question about amounts and even though I had the info on a piece of paper I was just incapable of doing the calculation.
I've been going to Tai Chi. Some weeks I'm exhausted for the rest of the day. I can't remember the sequence of moves but do feel better for the meditation at the beginning and the initial exercises so I think just push a little on the exercise as findmyhorn said. On a really good day (about once a week) I can take on the world . I want to work towards rebalancing and getting more hopefully better days.
Daily for me
Varies, I would say I have been above 81% during bad flares.
About 21-40 when what I feel would be a good day.
Mine is now 100% of time 😩...
Good reply, I'll have to definitely say that next time 😘
My fibro fog always seems worse when I am stressed, tired, anxiety levels up and feeling high levels of pain. So it is most of the time really, my 30 year old daughter told me it's that bad I should get tested for Alzheimer's
