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The UKFibromyalgia Forums • View topic - newly diagnosed.... all a bit of a blur



newly diagnosed.... all a bit of a blur

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newly diagnosed.... all a bit of a blur

Postby petergrimwood » Wed May 23, 2012 8:42 am

Hi all my name is pete and i am 56... just a few words i think you have all heard before " I can not get my head round it".. I have been ill for a couple of years and just recently been diagnosed with Fibromyalgia: benign essential tremor, there thats the first time i have written it down. My consultation with the consultatant was all a bit of a blur and i can not remember a lot about it althourgh according to his diagnosis letter "he explained it in detail". I have never heard of this condition before so openned up the minefield on the WEB and after about a week find myself here.... with loads of questions.. The first is obviously "what the hell is it"..Any offers ???????????
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Re: newly diagnosed.... all a bit of a blur

Postby sootybean56 » Wed May 23, 2012 8:58 am

hi :wave:
i`ve been diagnosied 3 years with fibro
its hard to explain all aches pains and exhaustion that i get
some days are better than others really feel ill sometimes
i have trouble walking i walk very slow although my mind wants to go faster
also very stiff especially on a morning cant sit or stand for long periods
get very tired easily yet then again dont sleep well

you will find lots of good info on this site
everyone is understanding and have same if not more conditions that they have to deal with
if it had not been for this site and the people on it then i dont know how i would have
started to accept fibro

hope your feeling ok today cause fibro can be very dibilitating :blowkiss:
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Re: newly diagnosed.... all a bit of a blur

Postby shazq » Wed May 23, 2012 3:06 pm

:welcome: to the forum Peter :wave:

The best place to start is to have a read around the forum and take in some info, its handy to know what you are going to be up against.
Fibro has many symptoms but that does not mean that you are going to get every single one of them.

Everyone is different, some have mild symptoms & manage their pain well with the correct meds & carry on working but others can be bed bound or in a wheelchair & on lots of meds but still fighting to control their pain.

Any questions just ask, we have lots of info and there is lots of support on here :wave:
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.... all a bit of a blur

Postby petergrimwood » Thu May 24, 2012 7:37 am

Thanks for responding... I have trouble using the computer & keyboard and can not chat on line .. Too slow. Hands shake. Fingers hurt.. Anyway i have decided to book an appointment with my GP and ask some prepered questions to try and understand more.... You know like can i get better or will it get worse....Am i likley to look forward to any other conditions this could lead up too.. Its costing a lot of money for perscriptions and painkillers and at the moment i am miles and miles away from being able to work so am i entitled to any benifits.. Its also putting a lot of pressure on my wife who has to help me with various everyday tasks as well as manage the everyday living tasks on her own... At the moment as every day passes i am getting more and more worried about the future... I hope someone can shine a light........
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Re: newly diagnosed.... all a bit of a blur

Postby shazq » Thu May 24, 2012 12:18 pm

Hi
Peter, dont worry about being slow on the pc, we dont have a chat on the forum.

The best advice i can give you is to have a good read around the forum to get your head around things just to know what you are up against. We have lots of info on here and we will give you as much support as we can.

You will get more answers to your questions if you start new topics under the correct headings.

Prescriptions are very expensive it will work out cheaper if you buy a pre payment card if you need more than 1 med a month, here is a link that explains it. (just click on it)
http://www.nhsbsa.nhs.uk/1134.aspx

You could be entitled to benefits you should call either your local job center plus or CAB. They will be able to explain what you will be able to claim, you might also be able to claim council tax & housing benefit. If you do claim benefits you might also qualify for free prescriptions. :goodluck1:
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Re: newly diagnosed.... all a bit of a blur

Postby denys » Thu May 24, 2012 12:22 pm

Hi Peter and :welcome: to the forum :wave: when you go to the docs take a list of questions with you dont expect to remember them when you go in. Lists are important for Fibro sufferers because we forget so quickly :yikes: :yikes: :yikes:

Also if its an important appointment then take someone with you if possible because they can then fill in the blanks :-D :-D :-D :-D
Denys

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Re: newly diagnosed.... all a bit of a blur

Postby petergrimwood » Fri May 25, 2012 6:23 am

Thanks for replys.... Will take all onboard and keep posted...
Happy daz...Pete
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Re: newly diagnosed.... all a bit of a blur

Postby animalhouse » Fri May 25, 2012 7:49 am

hi peter,

its a strange condition and has come on for many different reasons with different people - trauma, deteriorating health, bad accident.

hope its not too boggled for you and don;t worry about being able to understand everything at the moment, i have had this 2 years now and am only just learning to recognise and manage the condition.

everyone is so different in their symptoms and how they manage them so it is trial and error.

the best lessons i have learnt on here are:

1. pace yourself.
2. listent to your body.
3 read the spoons article that helps you allocate your energy resorcourse and manage the condition.

then
4. ignore the tips everyone tells you so start again at 1,

best wishes to you and your wife and take care. :-)
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Re: newly diagnosed.... all a bit of a blur

Postby petergrimwood » Fri May 25, 2012 5:32 pm

Cheers Animalhouse....... its a bit funny to me what you said because every day I try to get stuck in to a bit more reseach and understanding about this condition untill it wears me out.. So i get some rest and then seem to be back at No.1 and start all over again going over the same stuff.. Is this ground hog day, denial or fibro fog... there something sank in...
cheers again....Pete
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Re: newly diagnosed.... all a bit of a blur

Postby animalhouse » Fri May 25, 2012 7:58 pm

i got it following a car crash then the pain never went away and i cuold not accept it.

kept thinking if i try hard enough, take a deep breath, get on with it, exercise more, sleep more, move about more, rest more,..............................blah, blah blah.

i think it is calle ddenial but don;t want to admit denial either.

i suppose we don;t want to give up hope..

and one day you feel ok, the next day you wake up and fall back asleep again :crazy: :crazy:

its madly unpredictable, you just cant plan anything..

still kept waking up and thinking i am better occasionally, then i do something like go into town and am laid up again for the week..

what a life.... :-) :-)
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Re: newly diagnosed.... all a bit of a blur

Postby FluppyPuffy » Sat May 26, 2012 1:45 pm

:wave: :wave: Pete and :welcome: to the forum :penguin: :penguin: :penguin:

There's no need to worry about how long it takes you to post anything or reply to posts on here, we all do things at our own pace :penguin: :penguin: :penguin: :penguin:

As Denys has said, lists very quickly become our BFF as they help us remember a lot more than we might normally do, so prepping one in advance of your GP appt is a good idea. On the flipside tho, the list can very quickly become your arch~nemesis, esp when it decides to hide away just before you need to pick it up and go out :facepalm: :facepalm: :facepalm:

Your GP should be able to help you with the clinical type of questions. For some of the more individual/personal matters tho, if you feel you need/want some advice based on people's experiences, have a look and see what there is on the boards, and you can always ask on here about things.


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Re: newly diagnosed.... all a bit of a blur

Postby petergrimwood » Wed May 30, 2012 6:31 am

Well been to the doc,s with my list of carfully researched questions and............ my gp who has dealt with me all thro to diagnosis is off sick............ I had a doctor who has just had their workload doubled (due to my doc being off) so was with her for about 15 mins while she read my notes, I asked my first question "will my condition get worse or bettter" her reply "better with excersize any more questions" so i said i will wait for my own doctor to return to proceed with my BLUR...... Now i think i am in that barrel, going round and round searching for a corner to sit in.......... hey ho..........
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Re: newly diagnosed.... all a bit of a blur

Postby FluppyPuffy » Wed May 30, 2012 1:55 pm

Sorry your appt didn't go s you hoped Pete :grouphug: :grouphug: Your GP should be able to help you with the more clinical side of your condition, and hopefully we can help you with things at a more individual, personal level.

FM is a very vague and unpredictable condition that affects us all so very differently. Altho we share a range of symptoms, if you were to stand a few of us together and look at different things, we'd all display very different variations.

As to whether you will get better or get worse, it could go either way I'm afraid :facepalm: :facepalm: :facepalm: A lot of us have got worse over time, whereas others have found that they stay the same, or even have their FM go dormant on them. With some time, trial and error it is possible to find the right balance of meds, treatments and lifestyle that helps with managing your FM.

As to the comment made by the GP about things getting better with exercise, a lot of us have found that it isn't the case unfortunately. Exercise is beneficial for all of us as it can help ease some of the stiffness we have, and make sure we keep moving as much as we can. When it comes to getting better, that's something altogether different. Some FMers have found that their FM can go into a state of dormancy for varying periods of time, which means they feel "normal" or pretty close to it for a while. These periods can last for days, weeks, months or even years.


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