Newly Diagnosed sufferer

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Newly Diagnosed sufferer

Postby mazbck » Tue Aug 07, 2012 9:05 pm

Hi everyone

I was diagnosed last week by my Rheumatologist with FM,after 5 years of blood tests, poked, prodded and generally feeling being fobbed off one side to the next until I moved and registed with a new practise who then refered me to hospital. I was give amytriptaline to help sleep, and was told to carry on with my pain meds and fluoxetine, had bloods and xrays taken as well as one of my previous tests had a high marker for SLE.

Anyhoo, went to local GP today to see if any results were back and my usual doc is on holidays to saw one I really dont like and he wants to up my amytripaline, or change it and he basically told me I had psychological pain and pain killers were a waste of time, he even said that physio wouldnt help either, and that FM was a lifestyle illness, and I had to change my lifestyle and I would get better.

I then asked that if the pain side of things were psychological then how in heavens name have I to get help getting out of chairs, bath bed etc!!!

So angry even now that he didnt seem to want to listen and imply it was /is all in my head! :evil:

Anyone got any advice on what to do next.

My specialist has put me into her nurses hands now for CBT etc
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Re: Newly Diagnosed sufferer

Postby masonsbarms » Wed Aug 08, 2012 4:00 pm

hi sorry you have been told you have this, but i hope that you can get to grip with things soon.

i think that you were unfortunate to see a dinasore doc who has not caught up with the latest news on fm that it is a medical condision with recomended meds to try to help.

some lifestyle changes could help reduse your symptoms but not make them go away,

it is unfortunate that you will come across people who dont believe or dont understand you have to learn to take no notice of them
hard i know but they arnt worth your presious energy.

if you can dont see this gp again you need a good gp who understands and is willing to listen to you.

i was diagnosed in feb but had been like you and nearly everyone else tests tests and more tests,
this site has helped me to get to a more posative place and is always there for help support and advice take advantage of all the info on hear and for anytime you need to ask anything or need a chat.

take care xx
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Re: Newly Diagnosed sufferer

Postby positivethinker » Wed Aug 08, 2012 7:06 pm

Hi there sorry to hear about your GP being so out of touch so far as fm is concerned. Most good GPs have by now learned enough about the condition to know it is genuine. I am from Yorkshire but had to see an emergency GP in London recently to replace my meds when I lost them on. She was very up on fm and said she had read lots of new information on the condition recently so info is out there for GPs who regularly update their knowledge. Change GPs if you are not happy. It is your prerogative! Maybe someone on here lives in your area and knows an understanding GP you could register with? I have been taking amitriptyline for six weeks and I am only just starting to feel some benefit from it so don't give up. The 'hangover' type side effect has gone too now. Keep positive and keep checking on here cos you find all sorts of good tips. :-)
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Re: Newly Diagnosed sufferer

Postby shazq » Thu Aug 09, 2012 4:54 pm

HI Maz

It makes me so angry that there are still Drs around that seem to think its all in your head :twisted:
They work for the NHS and the NHS have a web site on fibro :banghead: :banghead: If you happen to see them again print it off and ask them to read it. :crazy: Sorry rant over :lol:
http://www.nhs.uk/conditions/Fibromyalg ... ction.aspx

You should wait for your other gp to come back off holiday & go to see them. physio does work for some people but some find it can make their pain worse.

Good things to try for pain are wheat bags that heat in the microwave or hot water bottles & Tens machines.

:goodluck1: hope you get on better with your other gp.
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Re: Newly Diagnosed sufferer

Postby denys » Thu Aug 09, 2012 6:52 pm

Hope things get sorted soon, I agree with Shaz go back and see your own doc
Denys

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Re: Newly Diagnosed sufferer

Postby FluppyPuffy » Thu Aug 09, 2012 8:13 pm

Definitely see your regular GP when they're back from hollibobs 8-) 8-) 8-) Altho the dinosaurs lumbering around the corridors of the NHS are slowly becoming extinct, until we hear that the last one has gone, there's a chance that one could appear very unexpectedly :nono: :nono: :nono:
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Re: Newly Diagnosed sufferer

Postby mazbck » Thu Aug 09, 2012 10:57 pm

Thanks for all the support, I have an appointment next week with my own doctor she is brillliant, she is also American and she seems to listen more than anyone else in the practice, in fact she is one of those docs who will have a conversation with you about everything then get down to the nitty gritty of doctoring!! :-)

Ive had a really couple of pooey days :sick: so really not doing good, its way to warm here, cant stand the sun like I used to do and sweat drips off constantly!

Ive a headache tonight, and my back is sore as Ive been in the car through to my daughters in Edinburgh.

Brain is seriously fogged as well, I couldnt even remember my dogs names lol, poor things
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Re: Newly Diagnosed sufferer

Postby positivethinker » Fri Aug 10, 2012 2:32 pm

Hi Maz I bought an old fashion fan (spanish flamenco dancer type) from a charity shop and it's great for cooling me down when the sweats start. Another thing I do is sip iced drinks. I fill a pint glass with diluted orange (no added sugar type for me cos I'm diabetic, although my kids say I'm diabolical!!!) and ice cubes and sip it thru a straw. It helps keep me cooler. I also only ever wear cotton clothes that are floaty and light. I've long since stopped worrying about appearance. Since the fibro kicked in all I think about is comfort and keeping cool. Anyway I'm sure you will find your own technique but it always helps to know what others do.
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Re: Newly Diagnosed sufferer

Postby mazbck » Thu Aug 16, 2012 9:28 pm

Forked out today on 2 small desk fans, one for living room and one for bedroom.

Im really suffering with my back today as I was at the hairdressers and the back basin was a menace to me. Oh well had to be done as its been over 2 years since last haircut :yikes:
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Re: Newly Diagnosed sufferer

Postby cherrybee » Sat Aug 18, 2012 6:14 pm

Hi Maz, havent been able to have hair washed at hairdressers for
a few years now, its frustrating because like my h/dresser says
that is one of the best bits to have your hair washed is so relaxing,
they say they are going to get a basin where you can sit forward, but havent
done so, have offered for me to stand and have it washed :yikes: dont
really fancy that, (still charge the same price :( )
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