the princess and the pea

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Postby cat123 » Tue Jul 15, 2008 11:30 am

hi everyone,just out of interest,about how long this condition lasts?These rumy drs simpley havent got a clue!How can they when after diagnosis,they never see you again!I havent seen a rumy dr for nearly 20 years,who are they kidding!They dont want you looking on furums because they know the truth is,they havent got a clue whats wrong with us,and we all discover,there are many fibros around that have had the condistion years.Plus they cant be bothered in this country to even research it!If all our gps put pressure on the specialists,we might get somewhere.Heres another fact,Its not the goverment fault theres no research done,they give out money for research,to drs,but its the drs themselves who deside,what gets researched!Fibro sufferers,have signed petistions,to get the govt to do something,but drs wont research it.That was the responce we got back off the goverment.So everyone,we all await canada,and the usa,finding out whats wrong with us,because they are researching!So if you see goverment petistions on our furum,its in your own interest to sign them.................cat............who gets mad on this subject :(
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Postby Angel31 » Tue Jul 15, 2008 6:05 pm

Hi All,
Thanks for the responses, i have had the headache from hell today!!!
So i didn't see your replys before they were changed, hpoe i didn't say anything to offend anyone, your the only friends i've got, i'd hate to upset anyone.
Think next time i see Gp (next week) i will ask him to look up NHS direct it says nothing on there about 5 years. thats written by them.

Got to go now, 2 1/2 year old son just smeared rice pudding in brand new carpet :shock: if husband finds this i could well be divorced by tommorrow.
Why do children act up when you are feeling especially ill?
Love to all Chloe xxx
( i just spelt my own name wrong then and had to correct it!!!!)
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Postby princess » Tue Jul 15, 2008 6:31 pm

[quote="Angel31"]My GP is also convinced this only lasts 5 years, he tapped up some medical website and there it said lasts 5 years. Who makes this stuff up? where is the research to say how long it lasts? Even the rhumie told me not to go on to websites and speak to other people with this as they have some horror stories :shock:
I get alot more comfort and support from everyone on here than with the medical profession!
Some people just don't have a clue, and if these people are the ones who are supposed to be helping us where does that leave us?
sorry to rant.
oh well i've only got another 4 years and 11 months before i'm fine. don't know what i was moaning for eh!

Chloe xxx[/quote]


Well what i was told by the Rhu Specialist was - some people can come back as before, but if you have it over 5 years then im afraid its here to stay - and you know thats the criteria of DHSS, if you have it under 5 years you only get 2 years at the most benefit and then have to redo all the forms. But after 5 years they consider it as perm., and after 10 years if life illness.
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Postby velvet » Wed Jul 16, 2008 9:09 am

dotty you do not sound daft, you have put down my feelings exactly. when i am having a "good" day i just cannot understand, remember, comprehend how i feel on a bad day. on good days i start to think i am lazy, i am using my condition as an excuse, i am malingering. after all i can do this much today i must have been able to do it yesterday, last week whatever. the knowledge of what a struggle bad days are is no more than intellectual, i just cannot believe it when it is not there (and we are expected to tell others how it is when we cannot even tell ourselves)

it does sound daft but to have a blood test to point to, to say look that is what is wrong, that is what is broken, that is not working might just be enough to stop me riding myself, at least a bit.
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Postby Dotty » Wed Jul 16, 2008 12:23 pm

Thanks Velvet it was such a comfort when I read your reply. Today I feel really achey so not feeling the guilt. I think that's one of the things I need to come to terms with, the fact that fibro is so unpredictable.
you don't have to be daft to have fibro - but it helps!
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Postby RobG » Wed Jul 16, 2008 12:29 pm

the orginal post on this was the princess and the pea, i am not sure she would have been a fibro suffer from my experience is that she probably had nothing else to moan about :lol:

as it looks like my former employers are not interesting in being fair it looks like I will be signing on shortly but am in an odd situation. Dr said i should have stopped work last year when the fm got bad but as usual it got better (that is such a relative term). he says I am not fit for work at the moment so would get sickness benefit?
the bigger problem is I am a local councillor and do have to attend meetings so in effect can do some work it is going to be a nightmare I know it

I was diagnosed with FM 2 and half years ago and it has got worse. Not sure that in another 2 and half years it took about two years to go through every test in the book (the electrode one is the worse i nearly cried last time) so if Angels GP is right i only have about 3 months or so left before I am free (I BLOODY WISH).

Good news is that where I have been doing research into FM and disbility for my impending tribunal/appeal I have found out that a number of employers in the public sector now give guidance on job application forms saying you should tick the box identifying you as disabled if you have certain conditions and FM ME and CFS are all on there HOOOORRAAAAAY
when I die I want it to be in my sleep like my grandad not screaming and shouting like the passengers on the bus he was driving!
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