At your doctors

Was there a certain procedure that your gp went through to diagnose fibro for you?

[misspicky82]

Blood tests to rule out other conditions, so they'll look at your inflammatory markers etc for arthritis as it's similar to that. So full blood count, iron, etc. And then there is a physical examination where they press the Fibro trigger points and if there is pain there when they press, that's how they are able to diagnose along with ruling everything else out. It can take a while. I posted on your last post about my journey.

[Hidden in reply to misspicky82]

OK, thank you that's very interesting.

[misspicky82 in reply to Hidden]

I can't remember how many minimum trigger points it is to confirm a diagnosis, but there are 18 altogether

[Hidden in reply to misspicky82]

OK, I'll find out soon I hope..

[desquinn Partner Volunteer FMAUK Trustee in reply to misspicky82]

It works be tender points and they are no longer part of the modern diagnostic process although done doctors may use them for extra confirmation.

[misspicky82 in reply to desquinn]

Yes my GP used the trigger points alongside ruling other conditions or 1st

[Princess61 in reply to misspicky82]

That's just like me, every kind of blood test possible to rule everything else out.

[misspicky82 in reply to Princess61]

Have you been diagnosed now? Xx

[Princess61 in reply to misspicky82]

Yes, I've been suffering for years, put it down to menopause, old age, but doctor confirmed it as fibromyalgia after ruling everything else out.

[misspicky82 in reply to Princess61]

I have an appointment arranged to get my contraceptive implant taken out as I think I'm going thru perimenopause now but they can't test me as I have that in. I'm not needing it in anyway, only had it put back in last time bcoz it stops my periods but I've been spotting a lot and having some small periods recently and I keep having hot flushes and sweating but I've been putting it down to the tablets and then coming off and trying something else but then I thought, hold on, did could be menopause and nothing to do with the tablets so I need to get tested to find out. I can't keep changing medications if it's nothing to do with them. Although I've suffered for many years, I'm still newly diagnosed, March 24, so I'm on the path to finding out which medications I'm best suited to still.

[Princess61 in reply to misspicky82]

I take 50g amitriptyline at night, it helps me sleep, and deadens some of the pain. Co-codamol to. I had to give my job up, through the pain and exhaustion😔 I just kept cutting my hours down over the years, but it became to much. Hope you can get sorted.xx

[misspicky82 in reply to Princess61]

My GP put my Amitriptyline up to 30mg a few weeks ago but I didn't like having that much, felt like a zombie so I've cut it back down to 10mg, sometimes take 20mg if I'm in bad pain. That's what I was recommended since I 1st got put in it. I then went onto Venlafaxine at 75mg, to go 150mg, hated the side effects so then I weaned off that, back down to 75mg for a week then straight back onto 60mg Duloxetine which is what I was in before the Venlafaxine but came off after going up to 120mg, again side effects, sweating really badly. But I do think I'm in perimenopause as I'm sweating still but not as much. So going to get that tested.

Have a face to face appointment with GP on 9th September and I'm going to be asking if I can try Gabapentin and see how I am with that as nothing has brought down my pain levels as yet.

[MaggieSylvie in reply to misspicky82]

Did I write this?😮😉I could have!

[misspicky82 in reply to MaggieSylvie]

Mine huni? Xx

[MaggieSylvie in reply to misspicky82]

I know. But it's so close to something I could have written. The more we can all agree on a lot of things, the more we can learn 😊.

[misspicky82 in reply to MaggieSylvie]

Oh yes I agree, as just checking you were responding to my comment 😀 I've seen so many people's posts that I could have written too and I learned alot on here while I was awaiting my diagnosis, it was so useful! So I'm back on the Duloxetine 60mg now but it's doing jack all!! I'm so fed up of trying to find the right mix of meds for me and I just hope my GP listens when I see him in a couple of weeks. I'll keep you updated anyway sweet xx

[Hazel_Angelstar Administrator FMA UK Staff]

The royal college of physicians have diagnostic guidelines available on their website

[Hidden in reply to Hazel_Angelstar]

OK, thank you...

[KraziekLou]

Hi. Yes they did various blood tests to see if I had R.A and full blood count, I was put on co-codamol, that didn’t work. It took six months and I was referred to Rheumatologist who I saw the day before the second lockdown. Diagnosed then with Fibromyalgia. Are you having problems?

[AuntyPanda in reply to KraziekLou]

I am the exact same (except cocodamol does take the edge off of really bad days) and my dr still won’t diagnose me 😭😭

[Hidden in reply to KraziekLou]

Yes I'm having problems, I've seen Rheumatologist amongst others had bloods done etc...

Im going to asked my doctor about fibro next time.

[Africanmonkey]

Not for me no, but I know for some it has taken along time for the Dr to get it clear

[Hidden in reply to Africanmonkey]

It does look like it takes ages.

[jobananas]

I was first diagnosed with Polymyalga through blood test, but later was referred by my GP so see Rheumatologist after examining me was told it was Fibromyalgia.

[Hidden in reply to jobananas]

Did it take a while?

[EarthSitter1]

I was diagnosed with Polymyalgia rheumatica by my Gp who then sent me to see a Rheumatologist. I was then diagnosed with fibromyalgia by a rheumatologist ,I also have Arthritis. He did loads of blood tests and the pressure points test. I was originally told I might have fibromyalgia about 14 years ago and then left high and dry my second diagnosis of fibromyalgia was 2 years ago and what a difference! I’ve been having physio for over a year, my meds have improved occupational health have helped with gadgets and I’ve finally been listened to, things have improved so much in those years. Good luck with getting the help you need.

[Hidden in reply to EarthSitter1]

Thankyou..

It does seem like a lifetime since I started feeling like this and ive had lots of tests that have taken ages to get..

Thank you for replying, I hope you have a good weekend.

[MaggieSylvie in reply to EarthSitter1]

What does "having physiotherapy" mean for you? I think in the world of diagnosing diseases like FM, it is early days. One day, I predict they will understand much more about it, and it will cease to be IT but it will be understood to be a group of diseases, some of which can be treated - possibly healed. When I get referred to the physiotherapist I don't have physiotherapy - I just get to complain about what I've got and I get sent some exercises to do on my own.

[EarthSitter1 in reply to MaggieSylvie]

One to one exercises with a physiotherapist they’ve also offered me hydrotherapy. Don’t get me wrong I’ve waited 14 years for this and I’ve had the symptoms of fibromyalgia for longer than that. I’ve had covid 7 times so whether they think long covid may be a factor too I don’t know x

[MaggieSylvie in reply to EarthSitter1]

I doubt I have 14 years left! I could get hydrotherapy but I don't know how to go about it, and I have been terribly busy. I haven't had Covid.

[MaggieSylvie]

After all the tests, I read about fibromyalgia - told my GP and asked if it could be that, and he said "Sorry Maggie. Yes, it is". It was quite a few years ago and FM was "new".

[Hidden in reply to MaggieSylvie]

OK, I plan to ask mine exactly the same..

Thankyou.

[Hidden]

Yep, that's it indeed.. 🤒

[desquinn Partner Volunteer FMAUK Trustee]

I would hope all diagnoses are ones of exclusion. However, while they do look at other condition possibilities they are also looking at your physical presentation, history, and other aspects and compare that to the diagnostic criteria and then diagnose you. This is similar to many diagnostic pathways.

[soppysokes]

ours tends not to use the tender pressure point thing now, or if its done then not so much attention is placed on the responses.Due to it being so widely shared and ability to be easily faked apparently!

[desquinn Partner Volunteer FMAUK Trustee in reply to soppysokes]

"Due to it being so widely shared and ability to be easily faked apparently!"

Not sure where this comes from but it is not true. The tender point test was a research classification tool that was used as a diagnostic tool as we did not have anything better at the time. However, males were underrepresented in part perhaps to their different musculature. Also, there was a wish to properly represent the other factors that can be part of fibromyalgia so the ACR 2010 criteria was created and this was correlated successfully with the tender point test and has replaced it over time with the 2016 criteria being the current one.

Faking was not a factor in this process.

[soppysokes in reply to desquinn]

Their point they were making was that so many of those who maybe dont really have fibro, which of course exists and can be so debilitating, are now so aware of the ‘what to say,how to act’ mantra that not so much credence is put on that. Like most things though it can lead to the genuine losing out greatly on care etc.

[desquinn Partner Volunteer FMAUK Trustee in reply to soppysokes]

But their is no reference to who "they" are but the diagnostic criteria did not have this as one of its motivations for changing and would never have this as part their rationale. They are always looking at clinical outcomes and efficiency.

If someone wants to fool the "system" then the current and old criteria are equally exploitable as they are both self reporting to varying degrees with the current criteria having more weakness in this regard.

I think you are confusing those that diagnose fibromyalgia and those that make determinations about benefits or care assessments. These people would not be making diagnostic determinations.

[soppysokes in reply to desquinn]

It was just an answer to the original poster who asked how did people find their GP’s worked thru to a fibro diagnosis. relating purely to that surgery and what they are wary off.

[Hidden in reply to soppysokes]

Thank you for your answers soppysokes, much appreciated.