Fibromyalgia and Osteogenesis Imperfecta

stanley2012
stanley2012 Member Posts: 3
edited 16. Jun 2013, 12:51 in Say Hello Archive
Hi everyone, just wanted to say hello and see if anyone can offer me any tips on coping with the Fibromyalgia? I know I cant do anything regarding having OI but up until the last year I have managed to work full time despite my problems but the last year has been hell with the Fibromyalgia. Nobody seems to acknowledge the problems this causes on a daily basis and I want to know the best way to help myself as where I live the care is particularly poor.

Comments

  • barbara12
    barbara12 Member Posts: 21,256
    edited 30. Nov -1, 00:00
    Hello Stanley and a warm welcome to the forum....I dont have Fibro but I do know it can be nasty...I believe that many GPs dont yet recognise it..so this is the problem ...there are many sufferers on here so hopefully you will get some answers ...just type Fibro in at the top of the forum and there threads should come come...one way we can help is listening to one another it does help to talk about things...
    I hope to see you posting more very soon if you have any questions just put them in LWA .x
  • stanley2012
    stanley2012 Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi Barbara
    Thank you so much for your reply and I hope I can get some answers on here as to be honest the docs are pretty bad here. I have to take vitamin D supplements and they are really intolerable and upset my stomach so I was hoping to find out if there are any alternatives that are tolerated better than Adcal? My doctor said to me the other day that "You are the only person in Cumbria with OI so you wont get much help round here"! I was horrified and very upset. x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I apologise that I cannot help at all with either the fibro or the OI. I think that doctors tend to forget the impact that their unthinking words may have on us - being told such a difficult fact so crudely is far from ideal (not to mention unkind).

    I don't know much about OI (OK, I'll own up, I know nothing) but before I google my guess it's to do with bones growing incorrectly or badly? That has to be pretty rare and it's one of those situations where there won't necessarily be anyone in your area that knows about it - and how does he know that you're the only one? (Are we talking a GP or a specialist here - if the latter then yes, maybe he would have an idea about that.) What is saddening is that he didn't appear to even try to suggest where you could go for information and support. The interweb is a useful reasearch tool but there's a great deal of incorrect and just plain wrong material out there in cyberspace. No wonder you feel as you do.

    I am aware that the existence of fibro is open to discussion (I think one of the latest theories about it is to do with how the brain perceives pain) and not all doctors believe it to be an existing condition. There are, however, a fair few on here with a diagnosis of fibro so if you re-post on the Living with Arthritis board on this forum I am sure you will gain some more replies (not many bother to look in on here). The forum can be pretty quiet over the week-end so bear with us and I hope to see your name here and there. I wish you well. DD
  • barbara12
    barbara12 Member Posts: 21,256
    edited 30. Nov -1, 00:00
    Hi Stanley again..like DD I am not sure what OI is...I will be interested to find out..but how awful of your GP to talk to you like that...I am sure whatever it is you are entitled to treatment, so I would go back and ask were is the nearest specialist in this,it may mean travelling...saying that my brother has a very rare cancer and they did a video link with a consultant.
    You come on LWA and see if anyone with fibro can help..
  • frogmorton
    frogmorton Member Posts: 27,472
    edited 30. Nov -1, 00:00
    Stanley welcome to our forums from me too.

    I hope you get some good support on here - sure you will as there are lots of folks on here who have fibro (often as a secondary condition like yours)

    If I were you I would post a thread titled 'fibro' on the Living with Arthritis Forum.

    You can also do a 'search' there to look at older threads which might help.

    Love

    Toni xxx

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