Advice, please...

All your fibromyalgia experiences, questions and answers.

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Advice, please...

Postby Pinkroses1980 » Tue Aug 27, 2013 10:34 pm

Hi there

I have been told by my GP that the symptoms i'm having could possibly be Fibromyalgia, although didn't really sound convincing. I have been seeing a rheumatologist for about a year or so now - i've tested ANA positive and have Raynauds. They've mentioned lupus, arthritis etc, but blood tests are not showing anything. In the past i've been mri scanned a few times - head and neck - and have had a lumber puncture. All have been normal.
I had weird symptoms after I had my first child - tingling in my legs; pain in my legs when I walked; funny vision in one eye, which wasn't blurred, but was not clear; buzzing in my foot....all really weird and scared me a lot. Anyhow things cleared up...then things flared up again about a year later....this time went back to neurologist where they did the mri and lumber puncture. As i said, all normal. Things eventually just went. Still get bit of tingling, but nothing I worried about as i put it down to sciatic nerve stuff. Anyway, i've just had surgery - went under general anesthetic - and symptoms have returned, but this time pretty full on. I have also had difficult time personally - a very emotional time, actually. Biggest worries are tingling in feet, lower legs; pain in my right hip; front of thighs hurt when i go out walking; a of migraine-like headaches over right eye; sore upper arms - especially when I dry my hair; weird muscle popping/twitching in my arms and thighs; sore knees.....I think that's it!! Anyway, does this sound like Fibromyalgia to you? I'm due to see the rheumatologist in November and just want someone to say what's going on. I feel a bit fobbed off. I do have oesteopenia i my back and hips and have always struggled with lower back pain.
Thanks for reading :)
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Re: Advice, please...

Postby denys » Tue Aug 27, 2013 10:41 pm

Sorry we couldnt possibly say whether you have FM or not as we are not qualified, the problem is that FM symptoms mimic other conditions so closely at times that it is an exclusion diagnosis. So if you havehad all the tests and they are coming back normal then FM is a possibility

Ask your rhuematologist if they think its possible and go from there
Denys

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Re: Advice, please...

Postby SuzyVB » Tue Aug 27, 2013 11:23 pm

I like you have had a positive ANA test (1:320 homogenous) for years I was told I had MCTD and was treated with methotrexate & Hydroxychloriquine sulphate. Then last year my GP referred me to a different rheumatologist as I was clashing badly with the old one (long story) and the new ones now saying I have no autoimmune disease but do have FMS & ME so have stopped all the drugs. Since the drugs stopped my symptoms have worsened but its unclear yet if that's coincidence or not. My ESR & CRP are consistently slightly elevated so I still have monthly blood tests but like you no real answers.
I hope they can give you an answer soon as the uncertainty makes things harder to accept and deal with. Unfortunately things have got so bad for me now I'm no longer able to work and have a fair few days when I struggle to even get out of bed.
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Re: Advice, please...

Postby *Lisa* » Wed Aug 28, 2013 2:39 am

The ANA test is mostly tested for Lupus although Im no doctor and this could also point to something else.

Fibromyalgia does not show up on any tests so if you are ANA positive / have high ESR / CRP levals this will be caused by something else.

Lupus and fibromyalgia symptoms mimick one another and like Fibro , Lupus can take a long time to be diagnosed.

I have been told many times i am boredaline Lupus as my CRP levals are very high and stay high they never change! but my ANA is negative meaning i am boredaline as im showing symptoms but nothing serious enough to pin point it directly as my other bloods are fine.

I am told that if my bloods change (liver/kidney function/white cells) then i will need more investogation but until then im a sitting duck :chicken: :chicken: :chicken: <<<< closest i could find :lol: :lol: :lol:
As a Public Moderator & Admin 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...Lisa
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Re: Advice, please...

Postby SuzyVB » Wed Aug 28, 2013 8:11 am

ANA test just shows there is some auto immune cells in your body that could be due to any one of 1000s of illnesses not just lupus. My nan had Rheumatoid Arthritis & my mum has Sjögren's syndrome so autoimmune runs in our family
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Re: Advice, please...

Postby painprincess1 » Wed Aug 28, 2013 9:51 am

hi hunnie, as was said no one can tell u if u have fibro or not only after all your test come back clear will the dr no for sure.that doesnt mean u have to put up with the pain in the mean time.ask dr for something, your the first person i meet who has pain in the front of legs like me , i was told it was to do with my back and as i have fibro which is a nerve prob it made sense.i get buzzing in my feet and alot of pain in my arms ,so keep going back till u get an answer.dont be shy to come back here and chat if nothing else it helps to talk to other ppl who are in pain and theres a few here waiting just like u x
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