Why bother?

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Why bother?

Postby theouchfairy » Mon Aug 22, 2011 1:04 pm

Ever since I was told I could have something Fibromyalgia/ M.E related - back in May/June I've tried hard to eat as healthy as poss,
not aggravate my symptoms too much and follow what the drs etc have told me. Drs now think i've maybe had this for the last 3 years but it's got much worse!!!!

A referral was sent to chronic pain clinic back in May and I got to see the dr there Monday last week... 4 months in pain - got there to be told I'm on wrong medication - co-codamol for the pain which does little if anything ! It's got worse over the 4 months too!
Not been able to enjoy the holidays at all and the 1 day we went to the beach was exhausting and pain like a volcano throughout !!!
When I saw 'specialist' ha ha dr last Monday he was late getting there by about half an hour, I saw him for 25 minutes where 15 minutes of that was me telling him about my average day - he wasn't interested in looking at the meds I'd taken in - as requested by the letter for the appointment, i'd kept a diary - he wasn't interested in seeing it.

The Dr said he doesn't like labels it's definately under the Fibromyalgia/ ME umbrella :? but he likes to treat the symptoms not give lables.
Didn't get a straight answer out of him about anything except the fact he believed from hat I said and poking and prodding that I definately fell into the catagory and believed I was in pain. An he felt I never should have been put on co-codamol. He would contact my dr with his recommendations...

Anyway I left it a week - went to see my dr today and he has heard NOTHING from the chronic pain clinic at all..... so I'm still waiting

But thats ok of course cause I'm not in pain, I sleep fine, I'm able to work, finances aren't a problems at all, we go out all day every day and enjoy the holidays, never stay in.
Now reverse the previous statements or put NOT in front of them and that would be more accurate.
Yes dr I see stress is a trigger - so why are you trying to stress me out more by keeping me waiting before you help me, knowing full well that any medication will take a while to work probably - thanks so much

In PAIN fed up hacked off and totally and utterly had aenough

My doctor is on holiday for 2 weeks from Monday and the other drs aren't keen to see me cause they aren't dealing with this aspect of my health he is so looks like i'll be waiting the best part of a month to get any real relief at all - :( had enough of all this.

All the appointments take it out of you and you just never get anywhere why am Ibothering?
I can be stubborn, bad tempered and insecure, but if you can't handle me at my worst then you don't deserve to share in my laughter, generosity, happiness and confidence - when I find it all again of course
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Re: Why bother?

Postby selbo28 » Mon Aug 22, 2011 1:21 pm

So sorry to hear you are having such a bad time at the minute, your docs sound just as crappy as mine have been!! They think nothing of keeping us waiting for months on end and in huge amounts of pain!!

I hope you manage to get some meds that will help ease the pain. I have been on co-codimol for christ knows how long, they don't get rid of the pain but they do make me feel quite fuzzy and a bit drunk! ( I'm such a lightweight!!) I tried Tramadol but they did even less than the co-codimols!!

I was diagnosed last months after 13 years of pain and getting worse all the time. Am waiting to hear where i go from here but it's been over a month an no one has sent me any more appointments!! I had an MRI scan a few months ago and they kept me waiting 7 weeks before i got results!! Sometimes I feel like screaming in their faces to try and get accross the amount of pain I'm in!! Probably get chucked out of the hospital though!! lol

Well that's my wrists done in now, I really hope you get somewhere with the meds and docs cos it's so stressful having to deal with them when they show no interest in what you have to say.

Take care
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Re: Why bother?

Postby FluppyPuffy » Mon Aug 22, 2011 1:46 pm

Kinky to meds used for FM http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Treatment.aspx

Have you seen any of the other docs at your surgery??

With you being like you've described, it sounds like a treatment plan needs to be formulated and put into action ASAP. If you can make an appt with what is hopefully the better of the other docs at your surgery. Explain what the consultant has said, as well as the fact that you've been looking into potential meds. Tell which sites you've looked on to show that they are reputable ones, and ask which of the various meds they think would be suitable for you to start on. Hopefully things will start to bring you a little more relief soon :fingerscrossed: :fingerscrossed:
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Re: Why bother?

Postby shazq » Mon Aug 22, 2011 2:01 pm

HI
I would print the link info out which flup put up and take it with you when you next visit you GP, that link is from the NHS web site and has lots of good info about meds on it,(that should make your doc listen to you as he wont be able to disagree with a NHS site.)
your GP should go through the link with you and between the two of you pick a med best suited to you.
:goodluck1: hope it works. :hugs:
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Re: Why bother?

Postby theouchfairy » Mon Aug 22, 2011 4:17 pm

I will have alook at the link thanks

My new dr - the one I saw today seems to have been quite helpful but he admitted to knowing little about the condition and is waiting for guidance from the hospital dr - who without meaning to sound rude was like rap with a very loud c at the start. :roll:

TBH i don't understand why if the specialist last week is a dr - could he not have written on a prescription what he was going to ask my dr to give me !!!!!

I've told them all - I can't go horse riding which i used to love, I can't do Go Ape, I now struggle to walk far without a very noticeable increase in pain, I can't chop veggies without the sme effect, I can't sit on the computer for any length of time, I tend to hop on and off through the day, same with books, can't just sit and read have to get up and move about or I set to or can rarely watch a whole film through, used to go on 3 hour walks with our previous dog and now I struggle to manage half hour. Every day for months now is about getting through each day.

In the meantime the kids run riot when I'm here on my own! I hate keep shouting and half empty threats but they don't seem to listen to me talking to them reasonably and asking them just to play nice !
I miss going for walks, going to the beach, going out to the woods for hours, climbing trees with the kids. I miss all my energetic stuff like horse riding too, I miss goig to work and having that break from everything house and kid related - ME time.

I have hardly have any friends left cause I don't have the energy to go to their birthday parties, hen do's, evenings out, I have only seen 1 other person over the holidays for a visit who isn't related to us - she used to be our homestart lady!!!

:cry: :cry: :cry: :cry:
I have several dozen things that need sorting out and I just kcan't deal with them how I feel at the moment. I need to be in a better state than this when hubby goes in for his hernia op as i'l be left doing everything for a week or mmore and at the moment I can't deal with at all.
Feel really panicked and upset that drs don't care - exacty how muchg pain do touu have to be in before they get their finger out and help you?
I can be stubborn, bad tempered and insecure, but if you can't handle me at my worst then you don't deserve to share in my laughter, generosity, happiness and confidence - when I find it all again of course
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Re: Why bother?

Postby denys » Mon Aug 22, 2011 5:10 pm

Print out your post and show it to your doc!!!!! that should get them moving it shouldnt be like this he should be chasing up the info from the specialist and pain clinic

Flup like the kinky link you put up :shock: :shock: :shock: :shock: :shock: :shock: havent clicked on it dont know where it might take me :shock: :shock: :shock: :shock: :shock: :shock:
Denys

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Re: Why bother?

Postby tonydin » Mon Aug 22, 2011 7:08 pm

hope flups not getting kinky agian :oops: :oops:

ouch fairy was the pian clinic in the old west norwich hospitial i felt that was rubbisch , when i whent , who dx fibro ?? have you seen the rumatoligests at the norfolk and norwich university hospitial , i cant remember the name of the one who gave me dx . but he was very posoitive in his dx
tony
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Re: Why bother?

Postby shazq » Mon Aug 22, 2011 7:17 pm

I was being good girl :wink: and did`nt comment on the fact that flup left a kinky linky but as Denys and Tony brought it up thought it was rude not to join in. :lol: :lol: :lol: :lol: :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: :tongueout: :clap: :clap: :clap: :clap: :clap: :clap: :clap: :clap: :clap:
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Re: Why bother?

Postby FluppyPuffy » Mon Aug 22, 2011 7:31 pm

It wasn't my fault it went up as a kinky linky, the "K" and "L" on my keyboard swapped places faster than I was typing and made it appear :tongueout: :tongueout: :tongueout: :yikes: :yikes: :yikes:

Seeing as we've tried all conventional things, maybe some kinky treatment is what we need :tongueout: :tongueout: :tongueout:
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Re: Why bother?

Postby theouchfairy » Mon Aug 22, 2011 8:55 pm

tonydin wrote:hope flups not getting kinky agian :oops: :oops:

ouch fairy was the pian clinic in the old west norwich hospitial i felt that was rubbisch , when i whent , who dx fibro ?? have you seen the rumatoligests at the norfolk and norwich university hospitial , i cant remember the name of the one who gave me dx . but he was very posoitive in his dx
tony


Hi Tony

Yes it was the west Norwich Hospital. I said to my husband I've waited 4 months for that ???? OMG I really am in trouble with this!!!
It was a Dr Sidery ? Who was half hour late for the appointment - delayed apparently !
Nothing has been said about rheumatology by the drs - did your gp refer you there or the dr from west Norwich?
I can be stubborn, bad tempered and insecure, but if you can't handle me at my worst then you don't deserve to share in my laughter, generosity, happiness and confidence - when I find it all again of course
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Re: Why bother?

Postby gillshutt » Tue Aug 23, 2011 8:38 am

Get your gp to hurry them up, there's no reason why they can't email the idiot and ask him to pull his finger out from wherever it is he has stuck it... tell him to wash it before typing as well :shock:

In the mean time there is no reason at all why your gp can't give you some help :roll: it sounds as though they have no idea and are passing the buck... to someone who's even worse!

Go and explain how bad it is and that you need something now because of hubby's op and for your sanity. If they aren't willing to help then try a different surgery... oh and take hubby with you to appointments if possible if not then a family member or friend who can speak up for you and who is a witness to what's said and/or done... it's amazing how much more help you get when there's someone there watching them.
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Re: Why bother?

Postby theouchfairy » Tue Aug 23, 2011 10:04 am

thanks

Hubby had to stop home yesterday as we had someone round looking to replace the worktops in the kitchen as they'd been fitted badly!!
There's always so much to do here, it takes so much organising to arrange so hubby can come - it normally has to be a wed or Fri morning when Chloe's at childminders and thats dependant on when my dr is working :roll: could it BE anymore complicated

I have no one else to take with me - billy no mates me :crazy: and the only family we have living close by wouldn't drive half hour to come with me.
I wish I did have someone to back me up
I can be stubborn, bad tempered and insecure, but if you can't handle me at my worst then you don't deserve to share in my laughter, generosity, happiness and confidence - when I find it all again of course
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Re: Why bother?

Postby tonydin » Tue Aug 23, 2011 6:53 pm

ok ouch who gave you a dx of fibro ???
i was refferd to the pain clinic at west norwich ten years ago after seeing the rummys at norfolk and norwich , who did not know what was wrong with me apart from O A in the spine. the then ruled out fibro , as i said pian clinic i thought was a wast of time.

last year my gp refferd me to a nuroligist at n&norwich due to tinggling and pain in hands , tests showed no sign of any thing and was disharged,
gp then at my request and desperation refered me backto rummy at n& norwich , tgo re check for fibro after another batch of tests to rule every thing out AGIAN he dx fibro and hey pressto here i am
tony
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Re: Why bother?

Postby tonydin » Tue Aug 23, 2011 7:09 pm

now i should add ouch that the rummy i saw the second time had been asked by my gp to consider fibro as gp was not to certian about the condition , the consultant i saw can remember his mane but it started with m and he was i would gussw malysian of some were near by . . was very up on fibro and had no doute after reading my extensive history in the hospitial notes that fibro was my problem/

not haveing any real treartment as to be honest dont know of any that really works

take care and chill down if you can
tony
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Re: Why bother?

Postby tonydin » Wed Aug 24, 2011 9:30 pm

at the pian clinic i saw dr valantine , then dr christmass ithought OMG all i need is dr birthday and dr sympothy and i could buy them all a card :crazy: :crazy: :crazy: :crazy:
tony
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