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The UKFibromyalgia Forums • View topic - need some help dont know where else to turn



need some help dont know where else to turn

For all your questions and experiences of illnesses associated with FM e.g. thyroid, IBS, TMJD etc.

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need some help dont know where else to turn

Postby Gracie » Wed Jun 10, 2009 3:26 pm

Not sure how to start this, never used one of these before so here goes.

Been feeling really awful since christmas, really tired no energy and just put it down to working twelve hour shifts. but the the last six weeks have been a nitemare, been to my gp countless times just been given a load of medication to try and help with the pain i have been having and have had blood tests to no avail and no answers. Yesterday had to be the worst day i physically couldnt get out of bed and the doctor came out and told me to get a grip of myself my partner then took me to our local hospital and they said there wasnt anything more they could do for my pain with meds im already on and again i just felf as if they all think its in my head i know how im feeling and at the minute cant take any more i want to be told what is wrong with me although i know otherwise i wouldnt be on this site. As i said and im probably now rambling i just dont know what to do my situation is made harder because my partner is in a wheelchair after a road traffic accident so when a day like yeaterday happens its hard for him to help me even to the loo.
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Re: need some help dont know where else to turn

Postby luuluu » Wed Jun 10, 2009 4:01 pm

Hi :wave:

Sorry your feeling so poorly :hugs:

If I was you I would print of information about fibro and take it back to your doctor. Also list down all the problems your having and things you can no longer cope with due to the pain and fatigue, also, have they done any blood tests ? This appears to be the norm for ruling out any other conditions in cases like ours. It can take some time to get referred to a rheumatologist for a diagnosis but you can always ask your gp about it.

I went to a gp a few years ago who told me 'everyone has to expect some pain as they get older'....I was 38 then and at 39 the rehumatologist diagnosed fibro, that was 5 years from when I first went to see the doctor about it. :shock:

Don't give up, I literally refused to leave the doctors surgery until he referred me to a rheumatologist in the end. :shock:

Take care

luuluu :hugs:
xxxxx
what other people think of me is really none of my business
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Re: need some help dont know where else to turn

Postby gillshutt » Wed Jun 10, 2009 4:48 pm

You need to get a referral to a rheumatologist... tell your gp you want one, don't ask. Also your doc can get an FM pack from teh FMAUK site if he wan't to read up on fibro, or you could print some off and take it in and say I think I have this. I told my gp I thought I had fibro and wanted to see a rheumy.

Being told to get a grip is totally unprofessional and your doc needs a good kick up the bum :evil:
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Re: need some help dont know where else to turn

Postby armanisgirl » Wed Jun 10, 2009 5:02 pm

Hi Gracie & :welcome:

Sorry to hear you are having such a rough time. There is nothing worse than feeling so ill and nobody believing you just because blood tests etc come back normal. I think you're going to have to consider trying to cut your hours back so that you're not having to do 12 hour shifts, or changing jobs completely to something that you feel is more manageable. I used to do 12 hour shifts when I worked in a nursing home, and know how exhausting that can be; some staff did manage to get the hours cut to perhaps 9 to 5, but I know that's not practical for all kinds of jobs.

I agree in that you should go back to your GP with a list of fibro symptoms and ask for a referral to rheumy. If your GP is the kind that is a non-believer of fibro (which it sounds s/he is!) then either see a different GP within the practice or change to another practice (you can phone others and ask if there are any GP's/nurses that are fibro aware). from what I can remember (having a bit of a foggy afternon though!) I'm sure you have a 'right' to ask for a referral. In fact, when I had been to my old GP many times with my first symptoms, I ended up having to ask for a referral - he 'didn't see the point as I had no signs of arthritis ie no swellings etc!! But eventually I did get the diagnosis of fibro, though the testings for other conditions can be quite lengthy. Once you do manage to get a referral, take a list of all your symptoms and perhaps some fibro info (just in case the rheumy is also a non-believer!) and 'guide' him into checking for fibro from the start - this could assist you in being diagnosed a lot quicker, though all the other tests will still have to be done regardless.


I do hope you get some satisfaction quickly though, and although it will be difficult due to your parnters condition, please don't feel guilty about having an illness as well. It's something that is outwith your control, but once diagnosed, you could perhaps get extra help in and around the home via occupational health or social services should you feel the need.


Welcome to the forum; it's the best place to come, where you know everyone else has gone through the same feelings and symptoms as you are, and many of the problems you face, you can let off steam, ask hundreds of questions, seek advice, or share some of the 'better' moments.

Take care and let us know how you get on xx :hugs: :hugs: :hugs:
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Re: need some help dont know where else to turn

Postby smiler22 » Wed Jun 10, 2009 9:55 pm

i was in the same boat being tested here there and eeverywhere. till i eventually looked up sytmptoms on internet. i found fm linked with all of my syptoms. i therefore went back to my gp and said do you think. after nearly 6months more i eventually got referred to rheumo after my gp got stuck and couldnt get me anymore hlelp. so them march this year was diagnosed with fm. im now going to see pain clinin=c this month.

i think you may have to do the same. tell your gp that you have seen this on here and feel you may have it. keep asking. dont give up hun. you know how you feel. they dont. yo have to tell them.

good luck .xx
live life to the full as life is what you make itxx
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Re: need some help dont know where else to turn

Postby sugar plum » Thu Jun 11, 2009 7:01 am

:welcome: Gracie,
Due to fibro fog.. this is second try to say hello... wrote long message yesterday only to see it go into cyber space :roll:
So sorry your feeling so grim, sweetheart :hugs: :hugs: - and no, your not going mad :crazy: :crazy:
There is still, so little experience of fibro in primary care, that sadly many of us have had similar experiences to yours, when we've felt unsupported and ignored by the doctors :banghead: :banghead:
I was diagnosed in March, but Consultant agrees that fibro was a direct result of Skiing accident and neck injury a couple of years ago :yikes: :yikes:
Many many visits to gp, :oops: :cry: and long road to diagnosis, :dunno: :dunno:
Like the others say, print off the information and ask for advice / referral - and Believe in yourself, you are the only one who truly knows how you feel :hugs: :hugs:
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Re: need some help dont know where else to turn

Postby Gracie » Thu Jun 11, 2009 9:32 am

Just want to say thank you to everyone who replied to my plea its made me feel like im not alone and all this is not in my head.

Just got the results of my blood tests this morning and everything came back clear so going back to my gp tomorrow and will not be taking no for an answer thanks to all your words of encouragement.

Yesterday was so bad when my partner asked me can i do anything for you i asked him for a saw to cut my left arm of the pain was unbearable is it normal to feel it worse in some places than others? Other days it is all over but as i said my left arm yesterday felt as if it didnt belong to me.

We have printed stuff of and i dont think there is any box i dont tick and its actually quiet scary i havent been able to work in six weeks and im only 31 and was very active before this started and i cant even go to the supermarket if i do it feels like ive run a marathon.

Again thank you for all your advice and i will keep you all up to date with whats happening.
:hugs: :hugs:
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Re: need some help dont know where else to turn

Postby Deegill » Thu Jun 11, 2009 10:14 am

:wave: gracie.

sorry hun you are in so much pain and not getting anywhere, at least we can truly say we know what you are going through so you are not alone - which is the worst feeling ever.

I wont go on as there has already been good advice given.

due to your pain, yes you can hurt worse in one area ie your arm, but tomorrow your arm might be fine yet it'll be your ankle, thats how it goes sometimes, it does with me, although i was nearly sick yesterday with the pain in my hip going down to my knee, couldnt do anything, sit, stand, lie, yet its something you'll have to learn and get through.

THe doctor who saw you, i'd like to shoot him, that is not on, your symptoms are so real, but unfortunetly you are going round in circles.

As someone has said cutting down on work is a good thing, i've had to give up years ago, im only 37, so found that very hard, but a nessecarity. fog moment spelling!

Try fibrotalk.com they have a list of symptoms and other illnesses you may well get with fibro.

All the best, please keep in touch with us all, we are a good family!

:hugs: Dee
A smile a day keeps the doctor away!

Denise xx
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Re: need some help dont know where else to turn

Postby Lawrie » Sat Jun 13, 2009 7:06 am

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Re: need some help dont know where else to turn

Postby Gracie » Sat Jun 13, 2009 1:54 pm

Finally getting somwhere went back to my gp yesterday and armed with the advice you all gave me she felt i do have FM She is now refering me to see a rymatologost sorry about the spelling havnt a clue how to spell that. She also started me on amitriptyline although im not quiet sure if i can take any of my other medication at nite with it as i usually take tramadol for pain and robaxin to relax my muscles as nite time is always worse my legs are from one end of the bed to the other i should of asked at the time but brain these days never seems to be able to keep up with me i usually think of something and hour or two later.

Still have to wait nine to twelve weeks for appointment so still a bit worried till then at the moment i dont want to go out because if im not stumbling into things or stopping every so oftne because of a spasm i just dont have the energy and i dont particuarly want to stay in the house for the next nine weeks.

As i said before i hope all this makes sense and im not rambling on to much concentration not great either so take ages to do this.

:hugs: :needhug:
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Re: need some help dont know where else to turn

Postby smiler22 » Sat Jun 13, 2009 4:36 pm

glad that finally you have got somewhere. regards your painkillers if you ring up your local pharmacy they should beable to tell you what you can take together etc. :hugs:
live life to the full as life is what you make itxx
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Re: need some help dont know where else to turn

Postby Deegill » Sat Jun 13, 2009 10:16 pm

Gracie, you'll find by the sounds of it you have restless legs, and the tramadol will help, as thats what they use. you can take amits on them, not sure about the other med, as amits are muscles relaxants to.

Lawrie, have you thought about getting a mobility scooter you can put in the car to go shopping? my Oh bought me one, just so i could get out of the house.

Or for starters, most supermaskets have a powered scooter, or a wheelchair for you to use whilst shopping, see if that helps.

good luck to all x

Dee :grouphug:
A smile a day keeps the doctor away!

Denise xx
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