Labelled with Fibromyalgia by Doctor

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Labelled with Fibromyalgia by Doctor

Postby blackplum » Thu Mar 15, 2012 12:02 pm

It started in August 1999 I had a Baby aged 42, c-section very bad infection followed. Nov 99 fingers started to get nodules on, feet felt like they were curling like a claw, joint pain followed, Carpal tunnel after that. Very dry eyes and lack of saliva, very cold hand & feet all the time. Went to Dr, blood test done told me I had RA, went to Rheumatologist he said I had Lupus, Raynaud's Phenomenon, Sicca Syndrome. Was put on steroids, Anti-flammatory drugs, Tramodol and Plaquenil, it eventually settled down, but was left with pain in joints. Rheumatologist said it was Fibromyalgia and to get on with it. He has now discharged me from his care. Have now got major problems with joints, 1 shoulder, both wrists/fingers, hips and right ankle, also been diaognosed with Coeliac Disease. Sleeping, eating well, happy, no muscle pain, apart from deep joint pain, In fact I feel really good. Dr said Fibromyalgia again, just gave me paracetamol and Naproxen and told to get on with it. My shoulder is so painful its getting hard to hold steering wheel when I drive, should I go back or am I just wasting the Dr time. Your thoughts on this would be appreciated.
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Re: Labelled with Fibromyalgia by Doctor

Postby professor_cyrius » Thu Mar 15, 2012 12:39 pm

Hi, just thought I'd reply to your post. I am a male fibro sufferer, so I suppose I'm rare. I found different Docs treat you in different ways. My old doc thought I was putting it on, he was good at first sending me for Xrays and a whole body scan, but after the results came back negative and myt bloods came back negative for Arthritus he didn't really want to know. I suggested fibro to him, but as I said I'm rare so he dismissed it. I moved and got another doc, I suggested fibro to him and he started treatment immediatly, as he saw the tests I had before, he re-tested my bloods again, but other than colestrial I was ok. For over a year he treated me, but then went on holiday. A replacement doc came in, I had just had to give up work due to a fare up and new hours which meant less sleep and heavier work, (I was bed ridden for the weekend and couldn't walk properly or far for three weeks). I asked for a note ( not a sick note a back to work note just explaining my condition) for the jobcentre to explain 1 why I gave up work and 2 that I needed a less physical job and more routeen hours. He said it was psychological and argued with me for 15 mins thinking I was lazy and wanted a sick note. I managed to eventually convince him I wasn't after a sick note and got through to him what the note was for. He gave me the note but wouldn't review my tablets. When my doc came back off holiday he reviewed my drugs and also refered me to the rhuemitologist, who confirmed my fibro and is now looking at other medications and exercise. In conclusions some docs will be simpethetic others just think it's made up and we waste their time, before I got fibro I only went to the docs twice in 20 years.
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Re: Labelled with Fibromyalgia by Doctor

Postby Judy S » Thu Mar 15, 2012 12:50 pm

Poor you - you have been through the mill!

I don't understand why, if a blood test was positive for RA, nobody seems to believe it's true? Do you know what type of test was done? I am not an expert on RA, but as I understand it, the older 'RF' type bloods weren't very specific, whereas the newer ones like the ACPAs, are nearer to 99% accurate. I think if I were you, I'd ask for a more specific range of blood tests.

To be honest, though I have heard of lupus being a differential diagnosis for both RA and fibromyalgia, I have never heard of anyone mistaking fibro for RA or vice versa. One affects bones and joints in a very measurable way, the other does not, and instead affects soft tissue; the muscles, ligaments and fascia.

I suppose it's not outside the realms of possibility that you have both, but that wouldn't explain why the rheumatologist changed the dx from RA to fibromyalgia. I'd be confused if it were me, and definitely want a second (expert) opinion. Can you ask to be referred to a different rheumatologist for another look?
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Re: Labelled with Fibromyalgia by Doctor

Postby denys » Thu Mar 15, 2012 2:20 pm

Hi and :welcome: to the forum, I would go back to the docs and keep banging on their door till you get some answers we do get fobbed off a lot of the time but your blood results are showing something so it needs to be investigated.

As for the driving, I can empathise with you I ended up unable to hold the wheel or change gear it all left me with excess pain and I couldnt turn my head to look over my shoulder and so I took myself off the road. Another problem I seemed to develop was an inability to judge distances (spacial awareness went out the window) I proved it to myself yesterday scraping my mobility scooter :yikes: :yikes: :yikes: :yikes: :yikes: so wouldnt dare go back to driving.
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Re: Labelled with Fibromyalgia by Doctor

Postby FluppyPuffy » Thu Mar 15, 2012 2:21 pm

:welcome: to the forum blackplum :bear-dancing: :bear-dancing:

I've moved you into here with this being your intro post as it's a more suitable area of the forum :wave: :wave:

From what you have said, I think you need to go back to your GP to see about having your FM dx clarified with you being so unsure about. It is possible to have FM along side other conditions, so it is possible you have it. As for the issue with your shoulder and driving, this really needs to be checked out as well, just to be sure there isn't anything else causing you the problem. The one thing you'll find we say a lot on here is that anything new, worsening or just generally giving cause for concern needs to be checked out, if only for your own peace of mind. You should never be made to feel that you are wasting your GPs time, as the earlier something is investigated, the better chance there is for it to be treated/healed/cured.

There's a lot of info and advice on here, as well as support for each other. Anything you want to know about, just ask and we'll try to help you with it :clap: :clap: :clap:
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Re: Labelled with Fibromyalgia by Doctor

Postby shazq » Fri Mar 16, 2012 4:41 pm

:welcome: blackplum :wave:
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Fibromyalgia Awareness Day May 12TH.
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Re: Labelled with Fibromyalgia by Doctor

Postby Em c » Wed May 02, 2012 3:51 pm

Hello, I think I'm a bit like you. I'm on the plaquenil too and the rheumy has said fibromyalgia. It seems to be a common symptom with Lupus from the bit of research I've done. It's very hard to do all the things you used to and things everyone takes for granted which I'm finding difficult to deal with. I know how you feel, thinking of you.
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Re: Labelled with Fibromyalgia by Doctor

Postby Em c » Wed May 02, 2012 3:57 pm

Forgot some of the things you asked so had to re-read it! Brain's like a sieve these days. The RA could have been because they could see you had an auto-immune problem which may have then been the lupus, both show ANA positive I think. That could explain the confusion? The fibro, which is apparently present in about 30% of lupus patients would give similar pains I believe, but RA damages the joints and fibro doesn't cause long term damage. I'm no doc but I hope that helps?
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