To feel devastated at potential diagnosis?

Your friends may not be "fine" likey pretending to be. Yes there are different levels may not affect some the same as others but as someone who has had it for years I'm definitely not "fine". It's people like you who make out it's in people's heads and actually the pain and fatigue is very real. Lots of people have to reduce hours at work or even stop work altogether which is devastating.

As to the OP , you will need to learn to pace. I would ask the GP to be referred to the pain clinic for advice on how to manage it.

Do you have a copy of your blood results - they can often be accessed via the Nhs app. It's a good place to start to see what was tested and what still needs to be tested. I'd get a GP appointment with a different doctor and ask them what else could have similar symptoms and push for a referral to rheumatology and further blood tests

Have a look at health unlocked, there's a lot of useful info around blood tests for example nice guidelines accept a ferritin level at 20 but optimal is 70 to prevent symptoms. Similar for b12 - deficiencies in these could be a factor in your issues, unfortunately as well as a lot of other factors. - which is why a lot more things need to be investigated and ruled out before accepting a fibro diagnosis.

Interesting thread. I have sero negative rheumatoid arthritis (since I was around 34 years old - acquired after having a viral illness) but it wasn't diagnosed for 8 years. Now on methotrexate and so much better - but initially the GP(s) refused to believe there was anything wrong with me, despite being in a lot of pain daily.

My 19 year old DD has had severe generalised pain for the last 3 years, and has been diagnosed with hypermobility syndrome by a rheumatologist. She sometimes walks with crutches or sticks when out on a long day - which helps her a lot. She also takes glucosamine (which definitely helps too).

As others have said OP - keep pushing for an effective treatment. And I wouldn't necessarily accept the first diagnosis as there are many autoimmune conditions.

@Blackcats7 just for the record - I didn't think your initial post was mean or insensitive. You were giving your opinion, which is valid, as everyone else's is. It must be horrible living with stage 4 cancer.

As a GP I would always refer someone with possible fibromyalgia to a rheumatologist. GPs aren’t qualified to rule out everything else, unless they have additional rheumatological training/experience

Exactly this. It’s not really possible for GP’s to provide a diagnosis when they haven’t excluded everything it can be, which they can’t as it’s not all within GP remit. You can think of it as not being a diagnosis as such, but more just a term that is used when there is no known cause due to other things that do have a name, as people like to use words for things. If that makes sense.

I think a lot of people are suffering g needlessly, truly believing they have fibro, when indeed they do actually have other rare underlying causes for which there may or may not be more effective treatments.

Oh the irony 😂😂🙄

As a GP I would always refer someone with possible fibromyalgia to a rheumatologist. GPs aren’t qualified to rule out everything else, unless they have additional rheumatological training/experience.

There are lots of conditions which overlap with fibro. It will be worth asking for a referral to a rheumatologist. I was very nearly misdiagnosed by my GP and it turned out to be a vitamin D deficiency on further investigation. The consultant ruled out fibro in two minutes with the pain point test.

I absolutely hate the derogatory comparison on this thread and life in general about Fibro as if, because it’s not cancer, it’s somehow better. This just shows how little it’s understood and how people are ableist and dismissive.

I can’t find them at the minute but I had a couple of posts saved from a doctor who treats both cancer and ME and Fibro patients and she said in terms of quality of life the ME and Fibro patients are the worst. My uncle had lung cancer, had a bit removed and was as right as rain. My neighbour had a leg removed but is happy, mobile with a prosthetic and living life to the full. I absolutely would swap for that.

That’s not to say that you won’t be able to manage this OP. It is possible to live a decent life. You will probably have ups and downs but you will find ways of coping. Xx

Op please don't accept this diagnosis it should only been given once everything g else has been ruled out.

Please ask for a referral to rheumatology. You need further bloods - did they test for example anca, full thyroid panel(not just tsh) vit b, d, ferritin folate etc.

you need scans to rule out other conditions. There are so many autoimmune conditions that can be treated with symptoms like yours but they need to be identified first

I was diagnosed with fibro but it turned out to be a 1 in 40 million rare autoimmune disease. I've had chemo, steroids and now on long term biologics but am mostly pain free and have gone from being bed bound to back to a normal active life.

Please ask for a second opinion

I’ve heard this is the case now - rheumatology won’t take referrals anymore. Heard from rheumatologists so assume it to be true.

Apart from where the op says she's been diagnosed with it poor comprehension indeed.

At 18:52 today, from OP.

I thought I'd update this thread.

I was diagnosed with fibromyalgia today at the GPs

you may want to work on that comprehension.

Fibromyalgia isn't often diagnosed after 2 short months of a few symptoms.
I've got Fibro and it CAN be absolutely debilitating for me, not helped by being polyarthritic.
It can be hell to live with, but I manage to do pretty well solo parenting ND 6 year old twins.
I think it helps that I'm stubborn as fuck and push through the pain. I refuse to take opiate medication, so I have to grit my teeth.
As it's an 'invisible illness', most people have little clue about how much I struggle.

I have no idea why people keep posting this is an inappropriate diagnosis that they’d be ‘skeptical’ about. The OP has not yet been diagnosed with anything.

Poor comprehension skills are a real problem.

It's made up nonsense with no actual evidence. I've been diagnosed it after spending 9 years getting almost wvery test you can think up. This is what they've cine back and told me I have and prescribed me medication. I've no wheel chair or walking stick and live a relatively normal life. They'll give toy pain relief for your nerves and you'll see a pain management specialist. That's all.

I'd be sceptical about accepting a fibro diagnosis already tbh. There is no test for it and the symptoms can literally be hundreds of other diagnoses.. It's usually once lots of other things have been ruled out.

At least the fibro diagnosis isn’t revealing anything new and concerning. You already knew you are living with widespread chronic pain so the diagnosis basically only restates that.

Exactly the same for Dd. EDS, pots and MCAS
exactly the same for my friend trying to get her fibromyalgia diagnosis removed, she also has a pots, eds and MCAS diagnosis.

i have an eds and MCAS diagnosis and yes I have chronic pain and tiredness but I am glad I know why and can try my best to take steps to reduce symptoms

Firstly I think the GP is totally jumping the gun with this. There definitely needs to be more investigations and a referral before reaching this conclusion. What tests have you had done? Vit d, thyroid? Lyme disease?

Even with negative tests it could be some sort of post viral or ME? My brother was diagnosed with ME years ago and was exhausted for around six months and then made a full recovery. A friend’s son had some sort of post viral fatigue and as a teen spent a year not attending school and mainly in bed but has now fully recovered.

Dd was given a diagnosis of fibromyalgia years ago by a rheumatologist and to be honest Im not sure it’s a correct diagnosis because he also diagnosed her with EDS on the same day and EDS causes pain and fatigue so I don’t see why he also diagnosed her with fibro. It’s often thought of a diagnosis where all other possibilities have been ruled out. The main reason it’s a shit diagnosis is because any medical person will write you off (ime) without proper investigation for any future issues once they hear you have fibromyalgia, got a bad knee…..no point having an orthopedic referral or a scan, it’s just your fibromyalgia. 🤷‍♀️

i certainly wouldn’t be accepting a diagnosis after pain of a couple of months. Another friend is currently fighting to get her fibromyalgia diagnosis taken off her notes because she also disagrees with it and is now finding the label is causing problems.

I got told I had fibromyalgia.

I didn't, I had ehlers Danlos syndrome, POTS and MCAS and because they misdiagnosed me for years it damaged my body beyond repair.

Fibromyalgia is just a cop out when they don't know what's wrong with you.

I got fobbed off with fibromyalgia at one point by a lazy doctor. I don't have fibromyalgia I have an uncommon autoimmune disease that can't be detected with the blood tests available to a GP.

There's no way a GP can safely and competently exclude all other possibilities in 10 days with a few standard blood tests. That's not even trying to establish what's wrong with someone. If that's what's happening to people then it's an abomination.

I think the GIRFT guidelines have meant that fibro is now with the GP to diagnose and manage
gettingitrightfirsttime.co.uk/wp-content/uploads/2021/08/Rheumatology-Jul21h-NEW.pdf

I don’t think it was. I think it was (rightly) giving OP a sense of proportion. If somebody offered you fibromyalgia or lung cancer, which would you take? Of course no diagnosis is a ‘good’ one but really on the spectrum of things this isn’t the worst by a long way. I have an autoimmune condition which is a total pain but I can objectively see is nowhere near as daunting as a huge array of extremely serious conditions. It helps to remember that rather than go down the ‘why me’ route which is a road to nowhere.

Exactly- doesn't fibro normally have to be properly diagnosed by a Rheumatologist or has it got to the point where so many people have it that Gp's are now diagnosing it?