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The UKFibromyalgia Forums • View topic - New Here and very nervous!



New Here and very nervous!

Enjoy general conversation with other members

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New Here and very nervous!

Postby PaulineT » Mon Mar 06, 2006 1:10 pm

Hi I have been a member of these boards for months, ever since i was told i had possible fibro. At the time i didnt post as i didnt feel i belonged until i had a diagnosis, well I got mine on February 14th but not sure how i feel about it yet. After 3 years of hospital, doctors visits, tests and more tests I am feeling relieved, but should i feel like that and will it change? Doctors couldnt understand when they told me i hadnt got tumours ect but like i told them if it had been a tumour at least i knew what it was and could deal with it. The past 3 years have been hell, because of previous heart problems they put all my symptoms down to that saying chest pains were artery blockages coming back, leg pains were blocked leg arterys, numb face was mini strokes. After all the tests for these came back negative i was told ms, more and more tests proved that wrong and in the end all i was getting from doctors was that i was depressed and stressed.......................I said yes and its all you giving it to me! Well eventually the neuro i saw came to the conclusion that maybe i had fibro and cfs but didnt do anymore about it....................sorry if i am long winded with this and boring anyone thats if anyone can concentrate long enough as i know thats hard myself lol
I looked up fibro after that and saw i needed to be diagnosed by a rheuomatologist so asked my doctor to refer me, her answer was it wont do you any good he will only treat you like i am treating you! when asked again she said it wont do me any good all he will do is diagnose me....................right thats what I NEED!
well as i said at the begining i have now been diagnosed with fibro, cfs and Ibs. Ibs was a relief because for over 6 months i thought i had stomach cancer with all the pain, discomfort and feeling sick, which i had told doctors about and they completely ignored it.
well better end there and thank you for looking...............thats if anyone got this far!lol
Its just so good to feel i now BELONG somewhere.
Pauline
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Postby BuffyBoo » Mon Mar 06, 2006 1:34 pm

Hello Pauline,
welcome on board :D
I'm sorry to hear that you had such a hard time getting a diagnosis. Some of our members have, I know I was lucky.
Most doctors tend to look at our history and put all our ails down to the last thing...to be fair to them...they have 5-10 mins with you to try and find out what is going on....they also have a room full of people waiting for their 5-10 mins. FMS et al.....is an invisible condition in that it doesn't show up on any tests... If I hadn't mentioned my tender spots, my Gp would have missed it and I'd not have my diagnosis now.
This forum is a great place to meet people who know exactly what you feel like....before I found this place I felt very alone, now I have an extended family who understand me.
Hope you find what you are looking for
Buffy xx
Sometimes my mind wanders, sometimes it leaves altogether!
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Postby mairi » Mon Mar 06, 2006 2:14 pm

Welcome Pauline,
It is great you found this site so soon after diagnosis. I empathise with you re. stress of repeated visits to doctors, having tests and then the hell of waiting for results while you deal with, on an hour to hour basis, all these incapacitating symptoms.
There is now a mass of information on Fibro. as you will see from this site alone. It takes ages to take it in
a) because there is so much
b) because our 'brain fog' affects our reading, understanding etc.,
c) because everyone is different and
d) because our symptoms vary so much and overlap with other conditions.
I recommend you start a symptom diary as soon as you can--that is a personal one. That way you will see patterns. I kept one some years ago, recording, for each day, sleep (good, poor,etc.),food eaten at each meal, activities managed (even if they were just washing and dressing) rest periods, pain sites and other symptoms. When I realised I was also affected by temperatures, air pressure and bright light/grey days I added these headings--ie;very cold, high air pressure, strong sunshine all day. This all sounds a chore and it is but you can see how days and symptoms repeat themselves and help yourself to some extent---extra rest periods, avoidance of certain foods and so on. You'll know this if you have been suffering from IBS for a while.

I also recommend The Fibromyalgia Survivor by Mark Pellegrino Anadem Publishing IBSN 0-9646891-2-X. It is a great help on all fronts.
Take care and gentle hugs.
mairi
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Postby Dobbycat » Mon Mar 06, 2006 8:06 pm

Hi Pauline, I only joined last week so still new to all this. I'm 23, and also have been backwards and forwards to docs, hospital, for tests etc, since I was about 10 (I think)! Finally diagnosed just b4 xmas.
This forum is fab though, the other members are so friendly and welcoming, and it's so nice to speak to people that understand exactly how u feel!
I hope you get as much help out of it as I have!

Take care

Dobbycat :D
New to all this, so a little scared still. So any info is greatly appreciated! Thanks x
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Postby Joo » Tue Mar 07, 2006 11:46 am

:D Mornin' all, just wanted to say I found a really good thing for my IBS. A product by Pharma Nord called Probiotic Capsules, they're the only thing that help settle my tum during a bout of IBS. The company is VERY helpful and they're good at delivery too!! Joo x :)
Smile - you might as well and it makes better looking wrinkles!!!
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IBS

Postby Kristine » Wed Mar 08, 2006 12:08 pm

HI,
The old wisdom used to be eat plenty of fibre for IBS, but this has proved wrong, the thing that got rid of it for me was a low carb diet, I completely gave up bread, I know I know, sounds awful, but my IBS stopped as soon as I gave up the white stuff, includes pasta, rice and potatoes, now, if I eat any bread, I get stomach cramps, wind :( , and pain right down low.

Low carb can be very good for us fibros as many of us are hypoglycaemic, also it helps with pain, someone explained it to me once, its something to do with insulin release, but I can't remember exactly....

I take Recuperat-ion and am having excellent results, there will be an article about it in the next FaMily Magazine, lots of us getting better with it.

HTH

Kristine
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Postby IanR » Wed Mar 08, 2006 2:26 pm

just a quicky welcome to the forum sorry for late reply had an off day yesterday :cry:

hope you find the help and friendship here

Ian
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Postby PaulineT » Fri Mar 10, 2006 11:04 am

Hi
Sorry for the delay in thanking everyone who replied but have had 2 very bad days.
I am just thankful there are so many people who know and understand what i am going through as I don't know anyone in 'real life' with Fibromyalgia.
It would be great to be in contact with a female around my age 52 as I would love to have a 'moan' with someone who understands.
Pauline
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Postby Rita56 » Sat Mar 11, 2006 12:10 pm

Hi Pauline,Welcome to the forum.I am quite new here too.I am 49 and have FMS and Rheumatoid arthritis also have just been diagnosed with high blood pressure(this illness stresses me out a lot)
I was diagnosed with the FMS last year but have had it about 10 years now.I have just been put on steroids so I am hoping they will help,they are for the arthritis though but if I can get that under control then at least I wont be in so much pain.It helps to talk with other people who are going through the same things and understand. :)
Please feel free to get in touch with me if ever you need a chat. :)
I am on my pc most of the time.
Take Care
Rita xx :)
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