should i change my Dr

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should i change my Dr

Postby loubie » Thu Sep 03, 2009 6:57 pm

hi all :wave:
not posted for awhile not been to well :(
went to doc's today, she asked how i was getting on :roll:
told her still the same, in pain and sleep pattern still all over the place.
she asked if i was worrying about anything, well were do you start!
i said that because i am off sick i do worry about our finances as can't get any sick pay or any other benefit and that it was costing us an arm and a leg for my meds an have now got a prepaid prescription card. thankfully she said she would put all my meds on a prescript so i don't have to buy them, then my hubby asked if she thought it would be possible for me to claim DLA ?
her answer was, it was not up to Dr's,BUT we are trying to get you better so here is your sick note for another month and take an extra amitriptyline at night :banghead: :banghead:

all the things i have read and as we all know on here I WILL NOT get better :banghead:

i just took my sick note an prescripts an walked out :( i am just so tired an in pain and so fed up
with stupid Dr's :needhug: :needhug:
loubie x
loubie xx

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Re: should i change my Dr

Postby shazq » Thu Sep 03, 2009 7:13 pm

I was just thinking about you Loubie. :hugs:

Sorry to hear you have not been well.

Have you another GP in your surgery?
Have you been seen by a rheumy?

You should claim for DLA.

Hope the extra amtript will help you sleep.

Hope you feel better soon. :hugs:
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Re: should i change my Dr

Postby miajane » Thu Sep 03, 2009 7:25 pm

:hugs: Loubie
Sorry to hear your having a bad time right now :hugs:
Is there another Dr you can see or ask her to refer you to a specialist as you are not getting better under her care. You are entitled to a second opinion if your dr can't help you she should find someone else who can.
She's right it's not up to the dr whether you get DLA. Your medical notes will show you've been unable to work and are not getting better. Check the directgov website to see if you think your entitled if you do apply for it.
The DLA may expect you to attend a medical so you will see a different dr appointed by them. The dr I saw was very sympathetic and though unfamiliar with FMS had read up on it prior to my appointment.
I did take a print-out from the NHS website explaining what fibro was I underlined the symptoms I was experiencing but I didn't need it, the dr had his own list and went through each one with me.
Take care
Mia xx
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Re: should i change my Dr

Postby rosie66 » Thu Sep 03, 2009 7:30 pm

Hi Loubie, I am so sorry, it must be a worry for you, i hope you feel better soon,take care xxx :hugs:
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Re: should i change my Dr

Postby smiler22 » Thu Sep 03, 2009 8:18 pm

sorry to hear that you have been felling unwell at the mo. like you said fm doesnt go., or get better. but i have been told that you can even get dla if you can work. so if yu are of sick you should be able to at least have a go if you canget it.
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Re: should i change my Dr

Postby loubie » Thu Sep 03, 2009 8:43 pm

hello girls :hugs:
thank you for your posts
think i will try a new Dr as the one i am seeing at the mo dose not like fibro!
having said that i don't think any other Dr would be any better with the meds but would perhaps be more sympathetic to fibro. we have about 6 Dr's in our practice and it was one of the others that
dx me with fibro before i seen the rhumie and was dx by him too but no follow up appointment just yes you have fibro and put me in for physio.
i really don't think i would get DLA as i can still walk and do things even though i am in pain.
i have a week away next week so perhaps this will lift my mood :roll:

have physio wen i come back and perhaps with a lot of work i will feel better an can get back to work :yikes: :D

thanks again :grouphug: :grouphug:
loubie x
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Re: should i change my Dr

Postby LinzWorld » Thu Sep 03, 2009 11:20 pm

Why would another doctor not be better with the meds? Unless your GP is and has done a lot fo research and educating themselves about Fibro, you really want to see a Fibro specialist for medication recommendations IMO.
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Re: should i change my Dr

Postby smiler22 » Fri Sep 04, 2009 1:00 am

hun i can still walk though it may not be far. i do walk with a crutch to stop me from fallingover. so there are cases that you may still qualify. im in the middle of waitin to see if i qualify for mobilty at the mo. i get the care rate as i cannot cook amin meal and need help with dressing etc.

it is worth lookingt into . even if you dont qualify.have a word with your local citizen advice. as they would be able to advice if they think yo have a chance or not. or go see you local benefits office,(usually in the job centre) they i think shoud give you a number for a benefits line if they cant help you them selves. all you is ring them and tell them your circumstances they will then tell you and go through some questions that yo anser then they will tell you which ones they feel you shoul dgo for. also have a look at the post dan posted for the are you getting the benfits your entiltled too. i think it s in working and benefits. headline are yo getting the benefits your entitled to. if im wrong some one please direct to the right bit.

on there dan has put a link that goes to a webpage that you put in what you get or not get and some of your circumstances and it will tell you if you can qualify.
live life to the full as life is what you make itxx
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Re: should i change my Dr

Postby LinzWorld » Fri Sep 04, 2009 6:59 am

I just to point out as well, that it is possible to improve with Fibro. There's no cure, but effective management is possible even if it is difficult to access.
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Re: should i change my Dr

Postby loubie » Fri Sep 04, 2009 10:57 am

hi all :hugs:

thanks again for your replies :hugs:
you have given me lots to think about
it just really gets to me the way my doc talks and wen i was dx by rhumy she said well that's not really a diagnosis ???? :shock:
i do have an appointment again with her in 4 weeks
but think i will try and change it to one of the others ?
my meds do the job most of the time as we all know if we do to much then nothing will work :yikes:
i am on paracetamol 4 times a day/codeine phosphate 30mg 4 times a day but can take 60mg if needed/ibuprofen 400mg 3 times a day/amitriptyline 10mg 3 at night also spasmonal for IBS
ow and Sena+movicol :oops:
as i have a week away i will try and do lots of walking an build my legs up :yikes:
can only try
as for benefits i have been on the site and dla is the only one that i could try for but i do feel that i would not get it any way
loubie x :grouphug:
loubie xx

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Re: should i change my Dr

Postby LinzWorld » Fri Sep 04, 2009 11:03 am

If your meds are effective, you should be sleeping well and not have significant symptoms on a daily basis - that's the aim with managing Fibro, letting sufferers get back to a relatively normal life that doesn't have to be dominated by the Fibro. You'll always have it and you would always get some flares, but generally, if your Fibro is stopping you from doing most things, then you aren't getting effective treatment.
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Re: should i change my Dr

Postby smiler22 » Fri Sep 04, 2009 8:00 pm

i obviously havent got mine under control the linzi. i have cocodamol and dihydrocodeine also amitriptyline but am still in alot of pain my walking is deccresaing at times, and i have to use a chair at times also. i have aother things wrong but the main is the fibro. i am still under the pain clinic getting the meds etc sorted. i thought fibro never went away just that if your lucky you may have a break and have a relapse if that the right word. i feel that ive been in a flare right from 3 year ago as i have nt seemed to get better and seem to get worse.
live life to the full as life is what you make itxx
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Re: should i change my Dr

Postby miajane » Sat Sep 05, 2009 12:15 am

Hi,
I keep thinking that if I could get some decent sleep I could manage the rest but I haven't had a proper nights sleep for almost 2 yrs now.
Like Smiler I can't walk far I have to use a cane and for shopping I have to use a wheel chair, my dr has said I will learn to live with it but has pretty much left it up to me to work out how. There are no specialists in my area and I can't afford to go private.
I haven't got worse, thankfully as my worse flare put me in hospital but I didn't know I had FM then and just kept working 6 days a week, single parent to 3 kids, studying with OU and doing everything else I did. I just kept pushing past the pain and fatigue until I passed out, the paramedics and dr's thought I'd had a stroke. I came out of hospital with a cane and a few months later was dx with fibro. I haven't been able to work since but I'm learning how to pace so I'm not getting worse but I'm still not better.
I didn't want to take sleeping tablets as I have occasionally before and though I slept I always felt lousy the next day.
Is it possible then to control the fibro to the extent where I'd be able to go back to work and lead a normal life with just the odd the flare, I can only get through the day at the moment if I do one task, such as put washing on the line and then rest after, sometimes I have to sit down in the middle of doing something and everything takes much longer.
I'm trying to listen to my body I want to push myself but I know from experience that just puts me out of action and in lots of pain for days.
Sorry for the long post but the more I understand the better I can deal with it.
Mia xx
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Re: should i change my Dr

Postby LinzWorld » Sat Sep 05, 2009 8:05 am

How much people can improve with effective treatment does vary (and it does take time!). Personally I've done very well and am back to working effectively full time (1 paid p/t job, 1 unpaid job that could easily be f/t & extra voluntary work). Not everyone could necessarily do that...and I do still struggle with flares sometime...but I think there's so often room for improvement, even for me. Some people do get some kind of remission (where they have little to no symptoms), but usually this is as the result of effective treatment!

The FM Clinic at Guy's Hospital in London is available to people out of area on Choose and Book. It's heavily over-subscribed (unsurprisingly!) but I think the waiting list is near the 18 week target now (not that it's a great target IMO!). It does give people an option to see a specialist (either Prof Davies or Dr Aslam, a consultant rheumy who has effectively trained under Prof Davies) if there isn't one locally and if private isn't an option. They can offer medication suggestions for you to then go back to your GP with.

It can take a while to find not only the right meds for you but how it works best for you to take them, but IMO it's well worth it.

On the page below there are a number of articles in the 'Becoming An Expert Patient' series. You may find them helpful, especially Becoming an Expert Patient Article 3: Dealing with Doctors and Becoming an Expert Patient Article 4: Medications & staying in controll:
http://www.fibroaction.org/Pages/learn- ... fibro.aspx
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Re: should i change my Dr

Postby miajane » Sat Sep 05, 2009 11:27 am

Thanks for the link Linzworld I've bookmarked them. I'll talk to my Dr about referring me to Guys to help with the meds.
I'm so glad to hear that you have been able to manage your symptoms, well done :clap:
I'm not expecting miracles but it would be nice to get to a stage where have at least as many good days as bad. I think that understanding what I have is the key to all this and the more I understand the easier it gets. :D
When I was first dx I was so confused, though my dr was sympathetic he could not tell me what to expect. I was beginning to think I might actually be crazy as I felt all the things I was experiencing couldn't be right. :crazy:
So I'd just like to say thanks to everyone on the forum since joining I've found all your experiences and collective knowledge a great help. :hugs:
Mia xx
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