Fibromyalgia fog: Hi everyone, Haven't... - Fibromyalgia Acti...

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Fibromyalgia fog

zann10 profile image
23 Replies

Hi everyone,

Haven't been with you all for a long time,hope your all doing well,I've been experiencing some increase in my foggy days for about 3 months now and wondered if you were the same,the sensory overload is making me so miserable and people don't seem to understand when i ask them to turn down the TV(for example),my memory is not too good either and sometimes I just can't get my words out, people just look at me like I'm stupid,work has noticed my issues and told me that it is starting to cause a problem,my balance is not good either,I'm so scared of losing my job and my faculties, anyone got any advice that may help me🤔

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zann10 profile image
zann10
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23 Replies
lolacat profile image
lolacat

Hi zann10 - I can really empathise. I don't really have the sensory overload thing, but other than that have had similar issues with increasing memory, forgetfulness, and dizziness. And I do understand the problems with work, though mine have been v good and I took a different approach and told them I was having these problems.

As to what you can do, well don't assume it is the fibro that is causing it. I don't know what drugs you are on - I'm on a high dose of gabapentin alongside other things (which we - my GP and me - have ruled out as a cause). But could well be the gabapentin, so about to start a slow reduction to see if it makes a difference.

My GP is also doing a range of blood tests - low vitamin D, B12 and thyroid can all cause similar problems, so if you having had any tests recently worth asking for them.

As for work, fibromyalgia is a disability so you are entitled (I think - I'm sure the administrators will know more) to have reasonable adjustments made. It's much easier to think of those in terms of physical adjustments, but this can apply just as much to mental functions. Obviously depends on what your job is but one like mine where it's all about my mental capacity (writing, speaking in meetings, decision making), it's about extra time, rest breaks, planning better with my team - down to me - so they aren't sending me complicated things to decide on in the afternoon when I'm at my worst.

Anyway, will be different for everyone, and I realise that all employers won't be as constructive about disability as mine. But they should be, so if you haven't already, ask for a conversation with your manager about reasonable adjustments and see what you can do together rather than it just being your problem.

zann10 profile image
zann10 in reply tololacat

Hello thankyou for your advice,im due to have a meeting with my manager this week about my fog,im lucky enough not to be on any meds at the moment but my blood tests did show severe deficiency in vitamin d so am on tablets but doesnt seem to be workin,i work in retail so not much chance for a sit down so feeling the effects of that but my gp did say she could write a letter so i could have altered duties at work,maybe i should go back,thanks again,be well!!

elizabethanera profile image
elizabethanera in reply tozann10

Re deficiency in vit d, is GP treating it? once you build it up, maybe feel bit better. Have you checked for b12 etc? I take, b, d, c vits

BlueMermaid3 profile image
BlueMermaid3

Hi zann10

I am so sorry you are experiencing such strong Fibromyalgia symptoms.

Fibro fog is a very real thing. My family have got used to me asking them to turn music or the tv down.

As Admin I am afraid we don't have any expertise for around the workplace.

Do you have a Union at work? If so, your Rep should be able to help you.

Other than that I think it would be best for you to consult the CAB with regard to your needs at work.

I am so sorry I can't be of any more help than this.

Take care of yourself

Lu x

Administrator

zann10 profile image
zann10 in reply toBlueMermaid3

Thankyou for your advice,doctor said she could give me a letter for altered duties at work,i may go back and see her,cheers,be well!!

BlueMermaid3 profile image
BlueMermaid3 in reply tozann10

Hi :)

You are really lucky to have such a supportive GP.

I know that Fibro is classed as a disability, and that you are entitled to certain adjustments be made, but further than that I don't know I'm afraid.

I would definitely get that letter from your GP my friend.

Thank you for your kind wishes.

Lu xx

TheAuthor profile image
TheAuthor

Hi zann10

I am so genuinely sorry to read of how bad your Fibro symptoms are and I have bouts of fogginess that come in waves. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

Dinkie profile image
Dinkie

I'm in the same position. Got an occupational therapist coming next week to my place of work to see me "in action" so that she can advise as to "reasonable adjustments". I am very suspicious of these people as they have been appointed by the firm I work for so in my eyes they are employed by them. They have asked to have access to my medical records. I have told them no way they can see my diagnosis letter and a list of drugs suggested by my GP (although I declined the drugs) and nothing more. The employers say they respect my decision but they will make decisions without the full facts - we will see - will report back when I know more. Also if you do have a "reasonable adjustments" visit from occupational health make sure you request to see the report before they send it to your employers so that you can check the facts.

zann10 profile image
zann10 in reply toDinkie

Hello,i would be suspicious too,most think that because the illness cant be seen that were trying to con them in some way,im very paranoid about that,it makes me sad and sometimes angry,i wish they could spend a day in my body just to see what i have to deal with,good luck with it all and let me know,be well

Dinkie profile image
Dinkie in reply tozann10

I have never had a day off work due to fibro. The only reason they decided to insist I had a "reasonable adjustment" appointment with the OT was because someone working in the office decided to put their nose into my business and found out I had a blue badge and in her words "was a health and safety risk as well as an insurance risk". Now this pesky interferring idiot isn't even remotely in charge of staff or first aid or anything related to it. I pointed out that there is no legislation relating to "disabled persons" within the Health and Safety Act. It says all health and safety matters relate to all staff !!! So thanks to the office idiot I received a letter stating they needed me to see the OT to make sure I can fulfill my work commitments as laid down in my contract. I am absolutely livid about it.

elizabethanera profile image
elizabethanera in reply toDinkie

Omg, how awful. Is this person afraid for her own job in wonder,so has drawn attention away from them.never trust anyone but yourself!!!!!! Sometimes these OT issues work in your favour, if you are up front, honest and reliable. X

elizabethanera profile image
elizabethanera in reply toDinkie

Just cos you have a blue badge does not mean to say you are incompetent.oooooh people so thoughtless and selfish sometimes.thinking of you.when is your appointment?

Dinkie profile image
Dinkie in reply toelizabethanera

I'm still so angry over it. I brought it up with the bosses as this particular person set on me the minute I walked through the door in front of other staff. Totally unacceptable in my opinion particularly as it was just a personal verbal assault. If she had said I understand you have a blue badge is there anything we need to be doing - for example moving your car parking space nearer. I would have accepted it even if it is still none of her business but not "you're a health and safety and insurance risk". This particular person is just an interferring busy body who has no right to make waves about something she knows nothing about. Believe me once the assessment and report are over I shall be gunning for her.

elizabethanera profile image
elizabethanera in reply toDinkie

Hi, I totally agree.wot a nasty vindictive before she must have! Yes, if it been even an inkling of concern, it was still not her place to say or do anything. I can only think, looking out for herself, which gets thecquestion, why? Speaks for itself really.when you have fought your battles, maybe a murmer of not understanding why anyone would do such a thing, very tactfully put to the powers.!!!you☺ve to be strong and not let her see she got to you!!!!!!!! I always found extreme civilitynworks

Dinkie profile image
Dinkie in reply toelizabethanera

Nah got beyond civility! she's been after me for ages. She can't cope with the fact that I am older and wiser than she is! Have put her in her place more than once - she begged me not to tell the bosses what she had done on one occasion - she's had her chance she hasn't learned her lesson so once this is assessment is over it's a case of demanding a disciplinary written warning for her.

elizabethanera profile image
elizabethanera in reply toDinkie

Ah, that explains why she tried to get you out.can she not be suspended pending investigation? Just watch yourself.

elizabethanera profile image
elizabethanera in reply toDinkie

What an awful situation you are in.make sure you can back up what you know please.

elizabethanera profile image
elizabethanera in reply toDinkie

Hi, you ok?

Dinkie profile image
Dinkie in reply toelizabethanera

Yep been to work today. I have kept detailed records so can back absolutely everything up, and of course it was all witnessed by other members of staff. She "ain't got a leg to stand on" actually neither have I as I walk with sticks or crutches :) I am one of those people who if someone says "you can't" I just have to prove that I can!

elizabethanera profile image
elizabethanera in reply toDinkie

Hi, sorry for late reply,had GP spot and baby granddaughter been here.just as well you kept a good record! What a cow she was ,not only to treat you so badly, but in front of others! Attention seeking at the cost of yourself.you must hold your head up, and be proud of what you achieve every day.a very dangerous person to have to work with and I saw a few.what goes round ,goes round. Sleep well.x

Dinkie profile image
Dinkie in reply toelizabethanera

thanks

I'm a great believer in karma!

elizabethanera profile image
elizabethanera in reply toDinkie

So angry for you. Why do managers always listen to people like this and get in a huddle to plan/plot. Not all managers are like this.i know, I was one and never treated my staff like this!makes my blood boil. Without the staff, they would not be managers!!!!!!!

elizabethanera profile image
elizabethanera in reply tozann10

Very true sadly.x

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