Healthunlocked newcomer and some news for everyone

Hello all,

I've been registered on this site for some time reading posts but have never posted. I've had fibromyalgia since the birth of my daughter 9 years ago and last year had to stop working as the condition took a serious downturn. I understand everyone's frustration at this debilitating illness and in particular the soul destroying lack of support from the medical establishment, It took me 6 years to get a diagnosis and a subsequent 3 years of wasted Rheumy appts as no medications helped, in fact the side affects only added to the burden of dealing with a condition that is socially, physically and mentally torturous.

As with anyone who has this condition, I pray for some kind of breakthrough and (not wanting to get anyone's hopes up), my rheumy told me there would be no breakthrough in our lifetime and to 'live with it' - like we have any other choice but to live with it!. I came across this news story yesterday evening and wanted to share it with you. If the research is correct and in time treatment is developed ( I don't care how long as long as there is hope!) we can go back to our Dr's and say 'I told you so' (I'm not bitter!!! - much) and for those of us who have experienced distrust and disdain from the medical profession maybe we can now find relief in the knowledge that science supports what we've been saying all along. It's not in my head, it's very real and yes it's ruined my life and affected those around me.

As I said I don't want to get any ones hopes up, I know that over the years we've seen research comes and go but I'm so so tired of this pain and everything that goes with it, I want it to be true!

medicaldaily.com/articles/1...

Best Wishes Rayne

6 Replies

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  • Hi and welcome to blogging :) ... I just read the article and its very interesting .... My hand and feet do react weirdly to changes in temperature .. But it set me thinking this could explain my extreme pain after operations .. The whole area around the op site branching out to about 2 -3 inches from the actual cut ...my nerves go into overdrive and I can't stand any clothes touching the surrounding area for weeks after an op and my skin feels like it is burning constantly.... When asked do I have a high or low pain threshold I always say I have no pain threshhold I am always in pain ...

    I won't get too excited for a cure but hope for an actual reason to be acknowledged would be wonderful

    VG x

  • Yes, that is very interesting. At last the medical profession are beginning to realise that fibro is real and not imaginary. they often do tell us to 'live with it' but few doctors will explain how. i have been lucky enough to have a rheumatologist who is very helpful with tips and information as to how we should cope, and he is always sympathetic. Fortunately, we have lots of information and experience here, to help make our lives a bit easier! :)

    Moffy x

  • Welcome to FibroAction Healthunlocked !

    Please feel free to visit our website at anytime Rayne for further up-to-date information.

    fibroaction.org.

    Look forward to reading more interesting threads in the future

    Any questions I am sure the volunteers (including myself) & other members alike can help you navigate the site.

    Best Wishes

    Emma

  • Hi Rayne. Welcome to the site, I haven`t been on it too long myself, and unfortuneatly my computer has decided to go on holiday for the last 2/3 weeks, so I am only just back,[ how long for I don`t know, only cheerful charlie [ computer[ knows that ]but I know you will get all he support you need from the lovely people on this site, they have been a wealth of help to me Best wishes and tender hugs , hope you feel better soon.

    Lyndia x

  • very interesting info ive printed it ready to add to documents in case I have to appeal

  • Thank you for your warm welcome. This site seems full of information and I look forward to getting to know you all.

    Rayne

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