Fibromyalgia Action UK
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Rhumatology - waste of time for hands?

Hello

I saw a rhumatology doctor a few days ago. I was referred due to the pain in my hands, shaking and cold.

Fuming. He told me it's all CFS/Fibro related and discharged me. I told him it was my consultant with 25+ yrs CFS/Fibro experience who referred me as he's certain it's not related. The guy all but told me I was wasting his time.

I thought they checked for more than just arthritis

Has anyone else been seen and got answers?

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That's terrible . I think they all don't know what they are doing and Pam us off with any excuse to cut numbers and justify themselves by their own advice and outcomes...... how can one professional have his theory and knowledge questioned by another and left at that ... that's shocking .. I get told oh it fibro related bye .... see you in a year see if anything has changed .. they don't give a toss ... so my head right in ... and I'm sure you will get much more useful advice from others on the forum .. xx

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like when i was at endo one said one thing and other the complete opposite! and didnt even know what was in there notes as what they'd told my Quack to give me has to be in there

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I went through a lot of tests and xrays and mri scans and it took a couple of months before they diagnosed me with fibromyalgia, i also have degenerative bone desease in my spine .

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thasts awful .i totaaly agree with what Aud01says,they dont know what each other is doing-my gp refuseds to refer me to a rheumatologist and tried to tell me my endo had fully investigated my symptoms which he did for Acromegaly but left it open for further investigation-put it in his letter and gp's still try to twist it round ,thec last timei saw a rheumatologist in 2012 he wasnt intetested in sudden onset of new symptoms-only about weight but wouldnt accept its not diet related,still dont -6 years on.

my dogs get better care from the vets than i do from doctors.

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What made me even angrier was my sister was diagnosed with EDS just after I received my appt letter. I did mention this to him as it can run in families but no, everything dismissed. I'll def tell my Consultant next month.... I doubt he'll be best pleased. In the meantime my hands are so bad 😔 onto plastic beakers now I keep dropping stuff

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i am the same yelskwah85-forever dropping things-pills keys cups infact almost everything.

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If you don't agree with the diagnosis you are entitled to another opinion. However perhaps you should respect what he has said.

What did your blood tests say about the possibility of rheumatoid arthritis ? I thought that was the way to definately diagnose this disease.

It's hard sometimes when we gave symptoms which have no obvious treatment and the possibility is raised of another reason which does have treatments. Going back to square one can be a blow.

I am sure you will have another chance to discuss the rheumatologists opinion with your original consultant who may have other possibilities to try.

Dee

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hi Dee

there is a form of arthritis that isnt detected by bloods as one GP told me when I had symptoms but bloods were "normal"..Sero-negative arthritis

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Yes , I have this type, it's up to the rheumatologist to diagnose this, i have seen several and in my opinion no two say the same thing, one told me I had RA and I was treated for years for this, then one locum decided in her wisdom that i didn't have it and promptly took me off the meds!!!!

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I didn't go there thinking I had arthritis

But I also didn't expect him to only look for that.... it was like it's all he could diagnose

I went there open minded to be honest, knowing the consultant referred me in good faith as he is sure it's not fibro related etc

Guess I'll have to get rereferred if nothing gets better

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I saw my new Rheumy 2 weeks ago for Sjogrens disease symptoms i was diagnosed years ago with that then last year diagnosd with PBC a autoimmune disease of the liver; i also have thyroid disease and osteoarthrits and osteopenia. I sound 90 and very ill but i am 57 and overall good health most days; but i have managed to enjoy my good days more now and manage my symptoms and flares as they occur. I have seen no less than 5 Rheumys in the past 10 years most retired sending me searching for another one to start all over with! This recent Rheumy said I have more symptoms of fibromyalgia now, but the PBC and Sjogrens have Some of the same symptoms, so i think it could be overlap symptoms overlapping diseases , and as these doctors learn more about the diseases symptoms they can diagnose easier now, if there isnt a blood test for the disease like fibromyalgia and fatigue they diagnose off of the major complaints and symptoms. This is just my experience so far and i am not a doctor. They are also following a protocol that they are to follow for their specialty. Exact blood work and tests if the symptoms seem to fit into a disease catagory then they are taught to order specific tests if the symptoms dont warrant any tests they wont order any. Patients can always get a second opinion and also can ask their doctor to order a specific test, I have done this many times and thank GOD I did as PBC untreated can lead to a liver transplant and death . I asked my doctor to please order labs for my liver because i had excruciating pain in that area where the liver sits. I saw 3 different doctors for this pain over 3 years not one did a blood test for my liver. I referred myself to a liver doctor after being told I had IBS for 3 years getting sicker and sicker. So take your symptoms and research them seek a second opinion and ask for tests that you feel will help you in your search for a diagnosis or to rule out what you think you might have.

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i can associate with you Michigan.being told I have IBS for close on 7 years now cos one GP made an assumption despite never having symptoms of it and my abdominal symptoms/conditions getting worse.

what angers me is if bloods come back as normal -at the end of the test results they put "no further action required",that is not the testers decision to make-it is up to the GP to decide on further action -blood tests are not everything.

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Have you been tested for liver disease? Enzymes and AMA?

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not specifically-recent bloods were "normal" -will take another look at test results-and ultra sound scan on liver pancreas also normal

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Yes look for any liver labs and a test called AMA i was diagnosed with IBS for years but realy had a serious disease called PBC. My main symptoms were belly pain bloating constipation headaches

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Rainbow, when the testers say no further action required, they mean in respect of the particular thing they were looking for in that test, as requested by your gp.If the test is clear then' no further action' just means for that test. The tester is only reporting back on that particular test. It's then back to the gp to decide if any different tests are required. I had that several times. After further tests I was eventually diagnosed with pbc.

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I've experienced this too . Some in the medical profession see the diagnosis of Fibro on our records and seem to write us off . It's so frustrating .

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thats all i get -its fibro -which took ten years for me to get diagnosed in 2005,by 2012 experiencing sudden onset of different symptoms-changes to facial features-bone/joint deformities/enlargement of skull -rheumatologist did not even acknowledge them .

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I had exactly the same result from Rheumatologist he was a total waste of space never listened to anything I said about OA in my knees, hips and hands just poked and prodded for pressure points which not one hurt sent me for X-ray of hands and feet and blood tests which showed I was Vitamin D deficient but he had sent me back to GP anyway.

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