Hi peeps...ok newly diagnosed with Fibro and have been reading up on it all and also reading posts on here regarding symptoms of this and how it effects people. However I would be very interested to hear from anybody who suffers from fibr-fog and what your individual symptoms are...slow/stuttering speech/headaches/blurred vision etc and how it personally effects you..every day...once in a blue moon...after a 'bad day' going to the cinema....etc etc.
I do believe I suffer from this within my fibro condition as a person who once was a primary teacher, i now find myself with bad spelling and a blank on how to correct it (thank goodness for spell check :-D) my speech can be stuttery and sometimes cant get what I want to say out etc ...concentration is sometimes a problem too.
Anyway be grateful for any feedback to this. Thanks in advance x
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Pebbles71
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I forget the simplest words and spellings, which I find so embarrassing as I am always so particular about spelling. Before I was diagnosed I thought something was wrong with my memory and that I was getting early onset dementia.
My speech is stuttery too and sometimes I just can't find the right words to just speak let alone explain what I want to say! This is really awkward at work as I have a lot of dealing with the general public both on the phone and face to face.
I also have blurry vision at times and dry eyes (this was diagnosed about 12 years ago) so really do understand how you feel xx
wow ..are you my twin lol. Thank you for your reply...yes it is embarrassing but it also is frustrating and i am tending to loose my temper and scream when it happens...only indoors thank goodness lol it is horrible to think you are suffering too..i soooooooo want to return to teaching but I am unable to due to the nature of fibro...up and down...good and bad days....its a nightmare.
i truly hope you are able to continue working ..keep fighting it hunni xxxx
I'm working full time at the moment, but don't know how much longer I will be able to as I keep having time off sick and this does not go down well with HR. I also sweat unbearably from head and down my neck - I always want a fan on at work or a window open which doesn't go down well with the others! Does this happen to you?
When i do sweat it starts from my head..I wake up during the night soaking wet most nights from sweating but during the day I tend to have fluctuations from hot to cold and then back again unless it is really really hot and then I cant move as I feel like my blood is boiling inside me and it feels like I am going to self combust. I then have to wrap a wet towel round me to cool me down but then i get cold and the sharp pains start...its all just never ending. Do your colleagues know you have fibro and what it is?
I have told some of them but they're not the most compassionate lot of women so aren't interested in understanding what it is. There are about 7 of us and we take it in turns to cover various aspects of the department. It's all admin work and dealing with the general public, so it's easier when I have to cover reception as I can have the fan blasting me all day, but when I have to work with them in the office that's when the sweat starts to pour. My boss knows I have fibro and I gave her a list of symptoms so she would understand (she is also my friend so I see her out of work).
yes im afraid fibro is hidden and so people cant see it and dont seem to care...but at least you have your boss/friends support. Is there no way she could put you on reception permanently or move your own desk to a window location/away from the others so you can have a fan and it not bother them? You have prob thought about all that before but just incase you havent....
Thanks Pebbles, it's a very old building and the windows are very high plus we're partly below ground! In the winter it's absolutely freezing despite the heating. It's a hospital and due to budget constraints they won't spend any money on it. Size wise it isn't very big and the 'desks' are effectively a long length of worktop! Still winter is coming so hopefully the 'sweats' will stop....
Oh I see...ah...not good then. Yes it has been very chilly for me today...Fluffy bed socks on and dressing gown by 4pm. I hate winter but I guess you look forward to it in a way.
I'm having a chilly painful day today. Tried to go back to bed for more sleep but couldn't get comfortable due to the pain. Now I'm in a fleecy dressing gown whilst the sun is shining through the lounge window! How are you today?
Sorry to here you are feeling it today..I too am in lots of pain and cold...got very frustrated trying to peel the pots and veg for dinner. Hubby did ask to take over but he ran when I snarled at him for the help. Had to give in when it came to lifting things from the oven and dishing up and then I felt just to exhausted to eat it. i am heading off to bed now. How had to take full dosage of pills today and now feeling so numb i can hardly function. So bed really is best place for me at mo.
Truly hope you feel better tomo. Your not alone xxx
Sorry to hear that you're not feeling brilliant either Pebbles and hope you have a better day tomorrow. I have absolutely no energy and have decided that I will talk myself off to the GP tomorrow - I think I need signing off for a while. Work are fast tracking my Rheumy appt (as it is in November), so really hope to be able to drop a day a week after appt. Soft hugs xx
Hi I found doing my job so difficult due to fibro fog, at the time I didnt know what was wrong with me, but I knew it was not right. I worked at a day nursery and have done the job for yrs, I was avoiding doing tasks because I did not know how to do them any more.
Then in April of last year, I got into my car, and I had forgot how to drive and was so scared.
oh no..im so sorry to hear that Jan. I can only imagine how that must have felt. In my last yr of teching I would mark loads of books and then come to one and sit there just staring at it not even knowing why it was there or what I was meant to do with it. its horrible and very frightening.
Do you still drive or did it scare you to the point that you didnt want to anymore...? I hope the latter wasn't the case.
Hi Pebbles, No I dont drive any more I miss my independence that driving gives you, but my mind just wont let me, its very strange this fibro it has made me a different person. I hope one day to drive again and feel better. Just get told it takes time.
I worked in a creche for years until I got Fibro (well I had it but didn't know until it got really bad) I started forgetting simple tasks at first, then started forgetting the children's names! I tried after school care then, that was worse, trying to help with homework!
I no longer work at the moment, don't know when I will and it won't be in childcare.
I have also stopped driving as I no longer felt comfortable in the car, nothing came naturally to me any more, if you understand what I mean.
I also forget how to spell, the names for things, what I am trying to say, what I was about to do etc. I get good and bad days. I have kind of figured out that, in my case anyway, on a bad pain day it is worse as the pain takes most of my concentration.
Hi I know just how you feel, it all started 2years ago for me, work was becoming difficult.It was very stressful. I think back now I have suffered from this for over 20yrs, Pain in my neck, shoulder, lower back.I just put this down to new baby, sleepless nights,but it has never gone away, just got worse.
I am finding it hard to live with this,because I was so independent, and its all gone..
Janlou...Independence is such a lovely thing to have and unfortunately we don't appreciate it when we have it until we get something like fibro that slowly takes it from you. I hear and feel everything word you are saying there I hate being who I am now and truthfully am really struggling coming to terms with it. So yes I really feel your pain with that one hunni xxxx
Dear Mary..I hear you loud and clear with the bit about forgetting names!!! I too have good and bad days but the fibro fog can strike at any time and I have been in mid convo on a good day and just stopped dead not just forgetting what I was going to say but forgetting the whole convo in a second. Most embarrassing. Bad days are Just so painful for me too..I just stay in bed or on sofa. If I try to do things I end up hurting myself or breaking things (plates etc0 so my hubby takes over.
Thank you for your comment and sharing your fibro ..take care xxx
Ah yes, the fog. When I was teaching dance I would forget exercises I had taught for years, I can't think of the words I need, I read things yet they don't make sense. It used to scare me so much because I thought I was developing dementia. I was sooo releived when I found out it was another Fibro related thing.
Yes that is what went through my mind Dementia and it scared the living day lights out of me. When i was diagnosed with fibro i was sad and angry but when I found out about fib fog I too was sooo relieved. I find my speech is the worst at the moment and it is happening every day. xx
Hi Pebbles - Fibro fog or my moments of pure insanity it works like this I misplace things and find they have new homes the milk in the cupboard the pepper in the fridge that sort of things. Usually pretty funny but sometimes I forget to laugh. It also stops me short in conversation with people I just loose words and the thread of what I am talking about.
Most people look sort of kindly at you when you fumble te words. I do find taking vitamin B12 helps .
We all vary in the ways it affects us so I hope yours is not too bad - Keep smiling it is more annoying than anything
I used to know lots of latin names for flowers now it is tremendous struggle to fish them out of the quagmire I have in my brain
Hi Gins... your quote ... It also stops me short in conversation with people I just loose words and the thread of what I am talking about..... my god I know all about that!!!! My hubby is so good he just says take a breath..take your time...but others like to finish my sentences or even start another conversation ... how rude is that!! B12 yes have read that on here from someone else so will try some off those. Thank you. i used to be RE co-ordinator when teaching..knew most off the psalms and parables etc with out looking them up and now well its all gone....although my hubby said something the other day regarding long hair and Hercules...i turned to him and said no that was Sampson! We both looked at each other and laughed...yes I had remembered something So i appreciate what your saying regarding the flowers. xxx
B12 injections are given to my daughter as she has pernicious anaemia - she has them every 8weeks - I didn't know the injections would help Fibro - thanks for the info, I will speak to my g.p. tomorrow
The new g.p. is much better informed on fibromyalgia
I suppose it's very difficult to convince doctors, family and friends that we actually are suffering from Fibro, when there are no specific tests to actually prove the condition
I've suffered a catalogue of illness from kidney disease, thyroid disorder, arthritis, vertigo, and heart attack - is it any wonder that I ache and wobble along most days ?
Bless you ...you have been through the wars! So glad you have found a supportive doctor. I am going to book my appointment tomo with my doctor and see what his reaction to fib is if not good I will be changing.
Hi, I'm newly diagnosed to. I have the fibro fog and just go blank. The worst is when I'm at work, I work in a school office and the head is not the most patient of people. I write everything down that I'm asked to do and tick them off as I don them I'm starting to get in the habit of this now although I forgot a comma the other day and got told off. I do find this and the fatigue the most frustrating. It's all new to me and I try and take each day at a time and remind myself I'm not an idiot (as my boss tends to make me feel like) x
I feel for you - it's bad enough for our self confidence that we lose our train of thought and stutter but to be ridiculed is disgusting
Fibro is a very little understood syndrome by many people - I wish awareness was more widespread
Don't let the ignorance of others wear you down - log onto here when you feel low or misunderstood - we all suffer the same and are here to help each other
Hi Libbylou....i feel for you hunni...I was made redundant 4 years ago from teaching and then had PTSD well still do but coping better now so at the beginning of the year I thought back to work time and decided to change careers and go down the legal secretary route. I started a diploma course which is home based and I am still doing it....I have mental blocks even yesterday I tried and I kept just looking at the keyboard not knowing where the keys were even though they were there in front of me, and my spelling is terrible..thank god for spell check!! I paid good money for my course and I will get to the end of it and pass but I think the last 6 mths I have deteriorated fast with the Fibro and being diagnosed a month or so back just proves it. So my legal career isn't going to be...No legal firm is going to employ me are they? never mind. You keep doing what you are doing..tick sheets etc and dont let that 'head' boss you about. If he gets to bad complain about him to your union/or phone somewhere for advise because he is actually being discriminating against a disabled person (we are classed as disabled due to the disabling symptoms we suffer such as fibro fog etc.
You take care now and thank you for sharing your fibro with us xxx
Thank you. I went back to work today and ended up bringing some home so I can do at my pace, although I have been given more stuff to do. I would like to cut my hours as do 35 at the moment. I hope your course is going well, I would like to do something different, but don't know what and have been for a couple interviews but go blank when they ask questions, not all of them so that knocked my confidence. Take care x
Fibro fog and fatigue are what stopped me from working. I was a postdoctoral researcher and was aware I was starting to make mistakes, which you just can't do. These days, I find myself forgetting what I'm talking about mid-way through a sentence. I can't find the right words often. They're on the tip of my tongue, but I just can't recall them. I often go through the alphabet in case that prompts me - it sometimes works I do have problems with my vision - symptoms vary, but are disconcerting. I would say I have at least one episode of fog every day, but can be many episodes. Frustrating, but not worth giving yourself a hard time over or letting it negatively affect you too much (if possible).
fibro fog is a big issue for me too I stutter and slur forget what im saying especially mid sentence, i was a single mum for years with a son with extreme adhd, whose now 23 and still extreme and have my own taxi and funeral business with my husband, i was doing great had a daughterwhose now 7 but as the taxis got busier (24hr) and my son reached adolescence the stress of coping with everything got too much, I used to play darts once a week and was a mighty good player, i so enjoyed it, then nearly 4 years ago wen we had all that snow I slipped on the ice landing in the road broke my left leg and right had, dislocating 2 discs in my neck and lower back and from then on my life changed, i am constantly tired I get headaches that last days and even over a week on some occasions, I get bad itching too, the pain in all my joints and muscles are unbearable, im lucky I have a very supportive doctor who was telling me for years I was doing to much as I was also a full time carer for my mother,, since that day iv been diagnosed with copd ,fibro, cfs ibs nerve damage in my right leg, and the discs and some arthritis in my lower back, im 41, I rarely go out, any form of exercise leaves me exhausted for days, im on max doses of gabapentin tramadol diclofenic paracetamol citalopram as well as diazepam 3 inhalers daily basically 50 pills a day which then make me very woozy anyway but its better then then pain without them and im always knackered anyway, I have my first appointment with the cfs clinic dreading the trip to it, I am on dla , but a good thing that's came out of all this is that once id accepted it that iv learnt to appreciate the smaller things in life and has made me realise im not a machine,i spent most my life having to look after everyone and everything I didn't take care of me I know now that I count too...., I wont give up and im determined to have my life back one day and when I do I will certainly be taking better care of myself....,,
anyway feel much better having shared that, lol my husbands not so supportive but I don't judge him, unless you have this u can never understand it properly, xxxx
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So i appreciate what your saying regarding the flowers. xxx
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