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The UKFibromyalgia Forums • View topic - newly diagnosed after years of hell



newly diagnosed after years of hell

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newly diagnosed after years of hell

Postby fifididi88 » Wed Aug 05, 2009 9:53 pm

Hi im 27 and just been diagnosed with FM after 2 years of hell. I have been poked and proded by every doctor in the stirling and edinburugh hospitals. All tests cleared and now have been told that had polyathritis at start possibly caused by virus and now left with FM. Although the last rheumatologist was not the normal doctor I was seeing did diagnose me with FM he wasnt very nice and my own doctor had to make sense of what he was saying to me when she recived the letter from him. He basicly said live with it and will probably see you back in few years as thre is a history of rheumatoid athritis in three generations of family.

This hasnt just been the last few years its been since 16 when had back problems migranes ibs anemia etc Just glad I can finally fit peices to why I had all these problems.

I struggle sometimes to bring up my children work full time cope with FM and all the other problems I have to deal with. My husband said to me a few weeks ago I have been amazing in the last few years as I have had to cope with all this on top of the death of my sister who I found dead.
I have been really grumpy and feel I do sometimes take It out on my family because i dont sleep.I do try to be positive and I do literally have to just get on with things. I dont think anyone knows the half of the pain I am in most of the time cos I try not to complain.
So how do you cope with FM cos I certenetly feel like I am going to have a nervous brake down sometimes and there are days were I could just crawl under a rock and die.

Good to get a few of my feelings of my chest.
Fi :D
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Re: newly diagnosed after years of hell

Postby gillshutt » Thu Aug 06, 2009 7:35 am

Hi Fi and welcome to the forum ((xx)) As for coping all you can do is take it one day at a time, or hour at a time on a really bad day. Learn to pace yourself and take rests when you need to (or just before you need to is best)

Gill x
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Re: newly diagnosed after years of hell

Postby shazq » Thu Aug 06, 2009 11:02 am

:wave: :welcome: to the forum.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: newly diagnosed after years of hell

Postby *Lisa* » Thu Aug 06, 2009 8:25 pm

Hi & :welcome:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: newly diagnosed after years of hell

Postby Chelsea » Fri Aug 07, 2009 9:16 pm

Hi Fi,

Just wanted to say I share your frustration and annoyance. I am somewhat in a similar boat. Two years ago I could hardly walk, had to let my job go due to my not being able to walk. I was diagnosed with having chronic arthritis in the left hip and knee. The spasms I was having was unbearable, nobody could come near me. I had a locked knee and was given an arthroscopy. Supposedly people recover from this within 3 weeks. I was getting worse, was assigned to a physio and was told 'there's lots wrong with you so it will take time'. Then then said I had a bone fracture in my foot and put it in plaster. The result - a broken foot!

I kept going back saying 'no I can't move my foot, can't walk still - something else is seriously wrong here'. They said just keep on with physio. I was 'put under' so they could manipulate my foot and when I came to, they said 'all is ok, just carry on what you're doing'. 8 weeks later I went back telling them I still wasn't improving and got the same response. But what I found out what was that when I was under THEY couldn't move my foot either, so how the hell was I going to. They then told me I may never walk properly again. Again, more painkillers.

I couldn't believe my ears and they kept upping my pain killers. I made an appt with the President of the British Orthopaedics Assoc in Southampton, and he took one look at me and was doubtful there was anything he coud do. I couldn't stand, couldn't balance and the spasms kept getting worse. He got all my x-rays etc from my local hospital, an arthroscopy wasn't necessary (I paid for it privately as I couldn't handle it any longer for the NHS waiting list). Also, there was no signs of a fractured bone in my foot but the way they set it was incorrect.

I had to do loads of physio (at home) so I couldn't straighten my leg before an op could be done on my foot. This got sorted and it resulted in my left leg being shortened, hence my limp. Had I left it one month later and not gone to Southampton, I would have been wheelchair bound for life.

I need a hip replacement but the Orthopaedist in Southampton wanted a neurological diagnosis before progressing any further as if there's anything wrong with your spine, the chances of your hip dislocating are quite high when having a replacement. My GP refused to refer me to a neuro as he said all the neuro is going to say is 'you have spina bifida occulta, there's nothing they can do for you'. I told him there was, they could de-tether my spinal chord. This took another trip to Southampton for him to write a strong letter to my GP, hence I've now seen a neuro

I stil get spasms and stiffness in my left leg, I had an EMG and also a full scan of my spine. The result? Nothing wrong with you. I said not even Spina Bifida Occulta? He said no. I told hm that I had seen the results from my scan and I've seen the hole at the base of my spine. He said well it's not there now. So I've got to get all information from Southampton to my neuro and he'll get a second opinion. So as yet, no official diagnosis. I've seen my original MRI report and it does show a lesion on the base of my spine.

So I still don't know fully what my diagnosis is going to be but I sympathise only too well of your years of 'not knowing'. At least now you do have a diagnosis and I think you will find this forum very helpful. Thanks too, for letting me vent!

Wishing you all the best,
Take care

Chelsea
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