can any one help or give advice to the questions below?

i was diagnosed with fibro in jan 2012 pain at times is unbearable and feel really ill some days but try to carry on as normal and not make a fuss. some people who i work with think i am being a pain and am just saying i cant do things. family are trying to understand but at times feel frustrated cause i cant tell them whats wrong. how do you make people understand what you have. ive even had a hospital doctor in casualty tell me there is no such thing it is all in my mind. feel worse in the cold and had no heating at work since last year which hasnt helped

7 Replies

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  • hi ronald. I think you are going through what most of us are i think its because you have no physical sacars to see. so people do not understand unless they are going through the same thing. Its hard to work I to have good and bad days. I find that there is not a day that something hurts. or my head is in the clouds with fibro fog. i was diagnosed last year, and am still coming to terms with it. I take each day as it comes. you will find a lot of supportive people on this site who will help you. I suffer more in the heat than the cold so it shows how diverse this illness is. just get all the help you can. Ignore the Dr in casualty as he is misinformed. if you can be refrred to a pain clinic you will get plenty of support good luck let us know how yoi et on xxx

  • thanks for the supporrt its great to find some were that others no what im going through and understands that there are good days and bad days thanks for the help will be checking in more often now i know there is help out there xxxx

  • i agree with you webby its very diverse i can be on top of the world one minute and that very evening be in agony .i found that going onto a site and printing out info for family and friends really helped me im very lucky also at work ( i can only work 3 days as i get exausted ) but my bosses mother has had fibro for years so she understands everything im saying or when i have to not come in.so ronald ignore people ignorance isnt bliss! do the printout and make them read it! good luck :)

  • For your family, there is an excellent book called 'The Fibromyalgia Supporter' by Mark Pellegrino. It is written by a doctor who has Fibro himself and whilst the book is quite old now, I don't think it has been superseded.

    The NHS info on Fibro may be particularly useful when dealing with work or doctors as it is "official":

    nhs.uk/Conditions/Fibromyal...

    It even mentions that stress and weather can worsen symptoms.

  • Hi there! google 'the spoon theory' it was written by a lady who has lupus. but it is often used in this type of situation to try to get others to understand what it is like for us. I have the poster on mytoilet wall so visitors get educated at the same time as they sit!

    :-) xx

  • thanks for your support will look to see if i can get the book.

  • just a thought aswell! If its not real then why is it a recognised illness on dwp.gov website?! also recognised by the DVLA etc! tell them to put that in their pipe n smoke it...:-) xx

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