Relief then Gutted....?

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Relief then Gutted....?

Postby mischief » Thu Feb 04, 2010 9:56 pm

When I saw the rheumatologist he actually 'explained' what I was experiencing - he knew!!!!
I suddenly felt a huge relief, at last I knew what was wrong, the weight of the world lifted from my shoulders then suddenly, I feel Gutted - no quick fix - What am I going to do?
So he gave me an information leaflet and told me to do some research - at least now I know I am not going to die and I know I am not definitley going senile and I am not the only person in the world dealing with this horrible scary illness.
Thank you for sharing your experiences and giving me an opportunity to share mine.
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Re: Relief then Gutted....?

Postby loubie » Thu Feb 04, 2010 10:56 pm

your lucky you got an explanation
all i got from mine was him turning to to nurse and saying fibromyalgia booklet
then turned back to me and said any problems go to your GP................. :shock:
i was dx last June
still not found a GP that will sit and talk to me about it just feel like :banghead: :banghead:
every time i go to the doc's
all i can tell you is take one day at a time :hugs: this is a good place to be because we all understand each other
loubie x
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Re: Relief then Gutted....?

Postby ladymanvers » Thu Feb 04, 2010 10:57 pm

Know that feeling exactly mischief! Same for me in September 2008. Mixed feelings eh?
Welcome to the forum. They are GREAT, this place is the only thing that's keeping me sane at the mo!

Ju.xx :welcome: :wave:
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Re: Relief then Gutted....?

Postby Harley » Fri Feb 05, 2010 9:57 am

I don't think Rheumy's realise what they are doing, I was told I had FMS and just told to go and look it up :roll: I'v had to educate myself along the way and now 5 years on can't believe that they are still doing the same thing.

I went to the same Rheumy department just after christmas to see if they would let us put up a flyer for out FM support group and they were just not interested :banghead: Everyone in our group had the same experience which I find disgusting.

Our PCT has just set up a patients forum and lack of information and understanding is one subject that they are going to get sick of me bringing up at every meeting!!!
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Re: Relief then Gutted....?

Postby loubie » Fri Feb 05, 2010 5:12 pm

we have about 10-12 doc's atour practice

STILL looking for one that can talk to me properly about fm :roll:
its just so frustrating and feel more down when been to doc's
loubie x
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Re: Relief then Gutted....?

Postby gillshutt » Fri Feb 05, 2010 8:33 pm

I was tod they had leaflets but they'd run out (how many did they have and how many others are there :shock: ) they sent one in the post about 2 months later :(

The rheumy doesn't deal with the mental side of it... they don't think about how it affects us mentally to be told we have something there is no cure for :?

Personally I think it would help if they had FM nurses in the same way they have MS nurses. Someone we could ring up and see to chat about how we are doing and who could help us by being well informed. They would know who to contact about things etc.
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Re: Relief then Gutted....?

Postby velvet » Fri Feb 05, 2010 8:38 pm

what a fantastic idea gill. maybe one day it will happen - i keep telling people that 30 years ago people with MS were told it was all in their heads and they only got ill cause they expected to get ill and now noone would dare suggest such a thing. hopefully in the future fibro will get the same recognition.
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Re: Relief then Gutted....?

Postby normalnutter » Fri Feb 05, 2010 9:26 pm

I would like to sujest we all contact our local newspaper and tell them how we have been treated on the nhs, but im a nutter, I hope one day it all works out for us all
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Re: Relief then Gutted....?

Postby mischief » Fri Feb 05, 2010 10:07 pm

I found the rheumatologist was really good - I was in with him for 50 minutes - it didn't feel like a NHS appointment (which it was).
It was after I left that I felt totally upset and, for want of a better word, Lost!
My GP is now referring me for therapy to help me deal with my 'low'
It sounds like I may be one of the lucky ones...............
The best thing so far is finding everyone on this forum - I can't get over how many of us there are who feel the same and it feels good not to feel alone :grouphug:
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Re: Relief then Gutted....?

Postby Mr.A » Mon Feb 15, 2010 9:05 am

All I was given was the word, not even a leaflet. I had to do all my own research.
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Re: Relief then Gutted....?

Postby fairy dust » Mon Feb 15, 2010 9:18 am

il never forget my 1st rhumy app, she got me on the bed twisting this limb and trying to get my legs behind my head,then she took my right leg and pushed it and pulled until she partly dislocated my hip !! at which point i screamed so loud she has refused to see me again! but in a way it was a good thing that happened as i was transfered to another ryumy- this 1 was standerd at 1st, the usuale,give me a leaflet and tell me to ask doc for xtra pain killers, but i requested another app last month,went in on my crutches with my 4yr old and hubby in tow (to help with the clothes removale) after an examination and the usuale walk up and down he looked at me and just said - yes your fibro is getting worse, damn !! so i thought what now !! and he surprised me totally- offered me and mri (which is booked for 6th march) and a 3 week hosp stay so that they can re arrange my meds,see how to help me control the pain,and to help me cope better with family life (instead of being confined to the sofa ) so fingers crossed...... but i had to really push myself on the docs ect to get the 2nd app,i think if you dont be strong minded agaisnt these people they will just brush you under the carpet, so keep strong all you fibro peeps and keep pushing for what ever treatment you need :grouphug:
please bear with me - my brain works fine its the body that lets me down !
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Re: Relief then Gutted....?

Postby mischief » Tue Feb 16, 2010 11:41 pm

I agree Fairy Dust - I find that being perfectly open about how I feel has made a huge difference in the way my doctor behaves with me :)
If I am happy and feeling better, I let him know but if I am in pain,tired or low I let him know exactly how it is....I now feel he 'knows' me :wink:
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Re: Relief then Gutted....?

Postby HazelB » Wed Feb 17, 2010 9:48 am

when i was first dx'ed by my GP she told me it was fibro, and gave me a leaflet for a support group which was 30 mins drive away. at that time, i could still drive fairly well, so the journey wasnt too bad - and i started going to the group, but symptoms deteriorated and i couldnt drive there and back, so had to stop going.

but i did discover that the rheumatolgy unit at greenock had a physio who specialised in fibro, and who ran a 4 week self-management course. i asked my gp for a direct referral to her for the course, and did the course, and also got follow up with hydrotherapy and accupuncture. She then referred me onto the pain management clinic last year when she was unable to help me more for my pain.

but to be honest, if i wasnt the type of person to go to my gp and ask her to refer me, or to try something different - i would probably be a lot worse off health wise than i now am.

its so true when they say the nhs is a postcode lottery xxx
(soft hugs)
Hazel xxx
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Re: Relief then Gutted....?

Postby angel star » Fri Feb 19, 2010 12:13 pm

I still can't even get referred, feel like i'm going mad !
mischief wrote:When I saw the rheumatologist he actually 'explained' what I was experiencing - he knew!!!!
I suddenly felt a huge relief, at last I knew what was wrong, the weight of the world lifted from my shoulders then suddenly, I feel Gutted - no quick fix - What am I going to do?
So he gave me an information leaflet and told me to do some research - at least now I know I am not going to die and I know I am not definitley going senile and I am not the only person in the world dealing with this horrible scary illness.
Thank you for sharing your experiences and giving me an opportunity to share mine.
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Re: Relief then Gutted....?

Postby mina666 » Wed May 05, 2010 11:10 pm

:D iI thought i was going mad,my memory is shocking,it realy scared me and the pain i have all over my body freiked me out,so i am happy to know that i am not alone . :needhug: :D i am glad to have found this web site and look forward to chatting to other suffereres :wave:
angel star wrote:I still can't even get referred, feel like i'm going mad !
mischief wrote:When I saw the rheumatologist he actually 'explained' what I was experiencing - he knew!!!!
I suddenly felt a huge relief, at last I knew what was wrong, the weight of the world lifted from my shoulders then suddenly, I feel Gutted - no quick fix - What am I going to do?
So he gave me an information leaflet and told me to do some research - at least now I know I am not going to die and I know I am not definitley going senile and I am not the only person in the world dealing with this horrible scary illness.
Thank you for sharing your experiences and giving me an opportunity to share mine.
hi,my name is mina i have lived with FM for 8yrs.i have just moved from manchester to ayrshire,i recently spoke to a lady who also has FM,she told me about this web site which i joined today and look forward to chatting to other sufferers.
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