Do you think fibromyalgia is diagnosed too quickly?

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Do you think fibromyalgia is diagnosed too quickly?

Postby Topcat0001 » Mon Apr 04, 2016 7:23 pm

Hi all

I spoke with my Rheumatologist today after cancelling my bone scan, ideally I want an MRI as I feel I need my ligaments and muscles need too be looked at but she says no point on doing one.

She said most of my blood test results are back and everything is normal so far, she said I am showing no sign of auto immune disorder and that when I go back in June she thinks the diagnosis will definitely be fibromyalgia.

But almost all of my pain is around my ribs, back and neck and always worse when I lay down, my feet and ankles are bad but then I have plantar fasciitis so I expect them to be painful. I do get odd shooting pains and I do get tired but equally my ribs keep me awake so I of course I am tired. Do you think they label all unexplained pain is this?
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Re: Do you think fibromyalgia is diagnosed too quickly?

Postby thesse » Mon Apr 04, 2016 8:17 pm

I am not sure, I was nearly sent away from my rhuematologist appt with a leaflet on hyperflexibity and one on fibro. I said, no, I also have swelling, and she grudgingly did some xrays and blood tests, I then get a letter for a bone scan, which I am going to go to as I have had joint pain since new year and it is getting very bad, and I have previously and for quite a while suffered from extreme fatigue. If I hadn't pushed she would have left it at that, and I think that I may have something else, however if nothing shows in my bone scan, it can only be fibro/CFS.

x
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Re: Do you think fibromyalgia is diagnosed too quickly?

Postby Topcat0001 » Mon Apr 04, 2016 8:29 pm

I refused the bone scan as I dont was to be injected with the dye as I am scared I am allergic and will die and yes that sounds extreme but both my parents died at 51 and I am paranoid I will die young too!!!

The lady I saw is a specialist in Lupus and all of her questions were gearing towards that. I dont have swelling apart from ankle/foot but that has been really bad for 19 months now so not surprised.

I hope you get some answers, good luck with the scan :)
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Re: Do you think fibromyalgia is diagnosed too quickly?

Postby FluppyPuffy » Mon Apr 04, 2016 8:53 pm

I think you'll find you get a real mixed bag of replies to this as there are some who have had to wait literally years to get even a referal, let alone a dx, and there are some who have had a decent GP who has run every possible test, sent them for referals to see if any more can be discovered/dx'd and done every thing else possible to help find answers, eventually arriving at an FM dx only after all other possibilities have been ruled out. And then there are the many who find themselves somewhere in between xx

In my case, I don't think it was dx'd too quickly. Because of how my symptoms started appearing, it meant that I was treated for a completely different problem for 4 years, with absolutely no benefit at all. When additional symptoms started surfacing that didn't respond in ways that were expected, I was then refered to a Rheumy who gave me the FM dx. As I'd been sent for numerous tests, scans, x~rays over the previous years, and esp in the past few months that new symptoms were making their presence felt, the dx was the only option left as all other possibilities had been repeatedly ruled out.
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Re: Do you think fibromyalgia is diagnosed too quickly?

Postby fatalrazkaz » Mon Apr 04, 2016 9:36 pm

As FluppyPuffy says you will get a mixed bag of answers to this but in my case the answer is a definite 'no'. I spent 20 years giving my Dr all the classic symptoms of Fibromyalgia, not deliberately I hasten to add as I had never heard of it till another Dr said he was referring me to see if I had it. I began suffering in 1992 a few months after a 44 hour labour with my first child. And so began 20 years of being fobbed off with 'Oh you have young children of course you are tired' and being told I was depressed when I knew I wasn't. The chronic pain I have suffered for those 20 years was largely ignored with the occasional blood test for Arthritis which I was always told was negative yet the Rheumatologist that diagnosed me with Fibro in 2012 said that I also have Osteo-Arthritis. I never see my actual Dr now as I just don't trust her judgement. I spent 20 years thinking I was going mad and sometimes even feeling like I was dying I was so tired and in so much pain. If I had been offered even a couple of tests during that time I would have grabbed them with both hands
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Re: Do you think fibromyalgia is diagnosed too quickly?

Postby Topcat0001 » Mon Apr 04, 2016 11:00 pm

I have had endless blood tests over the last few years, xrays and an MRI on lower back. I have had someone say to me if all tests are normal then there is nothing to worry about and its probsbly mind over matter!

I feel like people think I imagine the pain, I dont talk about it much usually I am worried its cancer but I suffer from anxiety and panic attacks and am beginning to think maybe It is all in my mind, I wont take medicstion for fear of a reaction. I just want reassurance it wont kill me! I even had a womb biopsy whilst awake as I refused the recommended general for fear of it making me sick! Being like this is hard work in itself :(

I know I was lucky to get offered the scan so quickly but that wont show any ligament or nerve problems.
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Re: Do you think fibromyalgia is diagnosed too quickly?

Postby galio » Sat Apr 09, 2016 8:01 pm

I got a double dx for hypermobility (which I first heard of some 10 years ago and which explained my life long pain bendyness and odd sweling from time to time along with many sprains and partial dislocations (that i didnt know what they were) my gp mentioned fm when i was there yet agian with sore arms after going walking! I had gone from bendy to very stiff in a short time, the stiffness could well have been down to the hms as the muscles were trying to over compensate for the wobbly joints and ligamaments . he did a blood test for a rhumatoid score and agreed to refer me to rhymy to get a dx for the hms (this gives me help through the disability at work laws) I had to cancel my first appointmnet as i was in edinburgh looking after my daughter and supporting her through raido and chemo therapy for 6 weeks, i had to cancel the 2nd one as I was by then full time carer for her in her last few weeks of life and her plans came first, the day of my appointment she stood in a local asda and shaved off a friends hair who was raising money for my daughters chosen charity,Brain tumor action. my daughter died 4 weeks later, I went back to my gp who emailed and got me bumped to th top of the list as he stated it wasbnt unfair to be dumped to the bottom due to the circumstances, ok have gone at such a tangent forgot what i was saying! oops suppose the fibro thing could be right after all foggy brain again!
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