My diagnosis....

deedeeitsme
deedeeitsme Member Posts: 321
edited 4. Jan 2012, 12:20 in Living with Arthritis archive
Hi all

Just been diagnosed with fibromyalgia. Been googling like mad for information and found loads so ok there. I have been advised by my gp to try to go back to work on reduced hours ie:- 4 hours per day instead of 8. I need to set up a meeting with my manager but really not looking forward to it. I have been off work for 5 months now with no contact with work at all apart from me ringing them to keep them informed about my sick notes. I need to work mornings because once I'm up and going (after about an hour of getting up) and have taken my meds I am in pain but ok up until the afternoon when I get so tired I just need to sleep. Think I will put it all in writing to work so that they might understand me better and print out some info about fibromyalgia for them to read through. Ok, ramble over x Dee x

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Blimey girl, that was hardly a ramble, I thought it neat and concise! :smile: Hopefully work will understand a little better about what is going on with you now you have a definite diagnosis and will accommodate your needs as they should. How are you feeling in yourself now? A little easier in the mind, I hope: it's always good to know that one hasn't been imagining things! I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Nellyphant
    Nellyphant Member Posts: 27
    edited 30. Nov -1, 00:00
    I got diagnosed in Feb last year and still feel "newly diagnosed".

    Definitely put everything in writing as I find the tiredness causes me to be very forgetful and I slur my words a bit so I tend to write letters to my GP etc so I don't forget what I want to say.

    Good luck with it. Prior to my diagnosis when I felt fit enough to work (2003) I was allowed to reduce my hours at work and then I didn't have any diagnosis.
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Dee,

    Having the diagnosis is good though cus you know what your up against now. I would be careful googling too much though as you can't always trust what you get off the net.....

    There are tablets that can help fibro as well and I hope they have put you on some? Tiredness in the afternoons seems to be part of it I am afraid but hopefully your work will not mind you dropping your hours a bit?

    Do they do a phased return thing as well? That might well help you as well? I really hope they will help you get back to part time at least. Keep us posted please. Cris x
  • deedeeitsme
    deedeeitsme Member Posts: 321
    edited 30. Nov -1, 00:00
    Hi all

    Thank you for your replies. I am really apprehensive about having a meeting with work, apparently they had a works meeting and it was said that if they didn't have to pay me sick pay they would be able to employ somebody else to do my job!! I understand that management may have issues with me not being at work but I don't think it is very professional to name and shame me in front of other employees. They have never contacted me to see how I am in the 5 months I have been off, no home visits or anything. Anyway, I have written the letter asking for a meeting to reduce my hours and I have also put in some info on fybromyalgia. I'm not holding my breath though. I did say to my gp what happens if they refuse my request and she said that then I am not fit for work so we shall see. x Dee x
  • deedeeitsme
    deedeeitsme Member Posts: 321
    edited 30. Nov -1, 00:00
    Hi Skeizer

    Yes it's great to finally put a name to all the pain I am suffering at the moment. When you know what you are up against you can finally get your life in some sort of order. I am on codeine + paracetamol, 2 of each 4 times a day and 2 amatriptaline once a day to help me sleep which is very hit and miss at the moment. I try not to sleep in the day but sometimes the exhaustion just takes over, that is one of the reasons I am going to try to work part time, mornings (8 till 12) because once I get up and moving this is my "better time" but by the afternoon I am no use to anyone. x Dee x
  • vwkamper
    vwkamper Member Posts: 132
    edited 30. Nov -1, 00:00
    Hi,

    I have Fibromyalgia too and yes there's lots of info out there which helped me a lot too. I was diagnosed 2 yrs ago but have had symptoms for going on 20 yrs.
    I've always been fobbed off in the past so when you are listened to it makes a big difference and you can move on with your life with a better understanding of your problem's so good luck. :grin:
    P.M.A Positive Mental Attitude.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    If you need to sleep then sleep. All of us struggle with fatigue, it's part and parcel of these diseases. I have found that if I build in plenty of rest moments during the day then things are manageable, but when the immune-based arthritis decides to have a bite at me then there is no alternative than to sleep for an hour or so in the afternoon, sometimes two, that means I can then get through the evening's activities. Listen to your body, deedee, it is telling you what it needs: it's not giving in, it's treating yourself to what helps. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • deedeeitsme
    deedeeitsme Member Posts: 321
    edited 30. Nov -1, 00:00
    Thank you vwkamper...I need to get my life together now and the first step for me is to get back to work if I can but unfortunely it has got to be on my terms. I may not be able to even work part time but I can say I tried.

    DD...I hear what you are saying and yes I do need to start listening to my body but it is sooo hard when you have always been able to do what you want when you want but I am learning to be kinder to myself if that makes sense, that is why i am trying to reduce my hours and allow time for me to rest if need be.

    x Dee x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It's a steep learning curve and even after fifteen years I still get it wrong from time to time. Accepting the limitations of this is hard but it has to be done for the sake of sanity! :smile: You'll be OK, talk to us and we will do what we can to help and encourage. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kittymedaughter
    kittymedaughter Member Posts: 81
    edited 30. Nov -1, 00:00
    Hi DeeDee, I am sorry that you have fibromyaliga, i have had it nearly 10 years now and i have managed to continue to work with help from Access to Work, without their support i wouldnt of been able to manage. I don't know what type of work that you do, I work in a office and they came and did a full desk assessment, recommended special chair and equipment and they also pay towards the cost of a taxi to and from work

    you are covered under the DDA if your employer employs more than 15 people and therefore they will have to make reasonable adjustments to try and help you keep on working. Please pm me if you have any questions

    I would make an appointment with the disabled advisor at your local jobcentre, they will be able to give you lots of advise

    Good luck
  • deedeeitsme
    deedeeitsme Member Posts: 321
    edited 30. Nov -1, 00:00
    Hi all

    Well the letter has been written and I am taking it into work tomorrow. Will have to wait and see what happens now. I have asked for a meeting with the manager so that I can explain my illness to them because it is difficult to put it in writing. I am a catering supervisor which means I am on my feet all day so I don;t know myself if I can even work for 4 hours a day but I have to try. Kitty the disabled advisor sounds like a plan if I don't get any joy from work. Thank you all for your replies, it's nice to know that there are people out there that understand what we are going through x Dee x

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