Advice please

Hi I got diagnosed on Friday by rhematologist with fibro abd osteoarthritis, going to have to start telling friends and family along with employees. Struggling to try and explain it. I am not very good at explaining how I feel at anytime let alive now. Can someone offer any advice please. Can't get my head around it myself to be honest, I have done lots of research online. Many thanks

Julie

9 Replies

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  • Hi,

    I remember that feeling. Unfortunately I can't work now.

    You don't have to tell your colleagues and employers, though I feel it's good to tell your employers for obvious reasons.

    Looking back, it took me sometime to accept my diagnosis myself.

    Maybe give yourself time and tell people when you are ready. Of course that depends on how it is affecting you daily as to when best to inform people.

    I have FM alongside other diagnosis.

    Wishing you well.

    X

  • Thanks for your reply. I may leave it for now, I am self employed so no problems with my employer thankfully! It's just my employees. Will do more research so I know what I am talking about. Sorry to hear you are not able to work, I hope to continue working through it but it's hard some days. Need to try and pace myself a bit.

  • Thanks for your reply. I may leave it for now, I am self employed so no problems with my employer thankfully! It's just my employees. Will do more research so I know what I am talking about. Sorry to hear you are not able to work, I hope to continue working through it but it's hard some days. Need to try and pace myself a bit.

  • Hi Alexander, and welcome to what I consider to be the best and the most friendly of sites for people like us with Fibro (and also other lovely conditions, like you I also have osteoarthritis and also osteoporosis ). Could I suggest that you take a look at our mother site fibroaction.org where you will find a lot of useful information and I think probably information for those recently diagnosed and advice for ways of handling it.

    It can appear daunting to try and describe something which no one can see physically. In my humble opinion it is best to be completely honest with family in particular and close friends, about exactly how you are feeling, explain that no one day is the same, one day you can do a, b, c or d and the next it is completely unachievable either due to pain or exhaustion. I know you have said it is hard to explain, and completely hear you on this, which is why some of the info on the mother site could be good if you print it out and ask them to read it because it explains what you are dealing with.

    I do hope that your rheumy is in contact with your GP so that they can work together at getting the best possible course of treatment,for you.

    Sending lots of positive healing vibes your way, and do come back to us for more help and advice at any time. Some of us like to have a spot of fun in an attempt to make people smile, laughter releases feel good endorphins......to some it might seem very odd, but for a lot of us it helps to have a bit of lightness in our day.

    Welcome again Alexander :-) :-)

    Foggy x

  • Thanks for your reply. Will have a look at that website. I will have to learn to try and say how I feel rather than struggling through things, I don't usually complain when feeling unwell! I have a very good rheumy she was brilliant and wrote an extensive letter to my gp, my gp is a patient of hers too! Thanks for all your advice.

    Julie

  • Thanks for your reply. Will have a look at that website. I will have to learn to try and say how I feel rather than struggling through things, I don't usually complain when feeling unwell! I have a very good rheumy she was brilliant and wrote an extensive letter to my gp, my gp is a patient of hers too! Thanks for all your advice.

    Julie

  • It is difficult to explain, I've given up now. Colleagues know I'm unwell and can't pick up reams of paper, load the printer or run to the shops, but that's about all. I've just started a blog so I don;t have to explain things face to face, if people want to know things then I can direct them there.

    FibroAction have lots of fact sheets you can download and there is also a list of support groups on the website, there may be one local to you. You could try pinning a fact sheet in your staff room or notice board at work.

    Take care and stay warm and dry tonight.

    Karen x

  • Hi alexander120

    I have pasted you a link below to the FibroAction website, whereby there are fact sheets that may help you explain these issues to others:

    fibroaction.org

    I want to wish you all the best of luck.

    Ken

  • Welcome to the forum.

    I remember that feeling. I was diagnosed in August and have only started to come to terms with it properly in the past few weeks. It takes time and I'm adjusting my life accordingly. It's starting to take shape but I know as things get worse I'll need to reassess my life again. It's hard there's no denying that but with support of family friends and this forum it all helps. Xx

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