To feel devastated at potential diagnosis?

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Hi all,

I've been suffering with some widespread pain for about a month or two. I woke up one morning completely exhausted and aching everywhere and thought I was getting the flu but the pain and exhaustion never actually went away. It was mostly manageable with some days/activities being worse than others but nothing too bad.

During this time I've also suffered with migraines, Toliet issues etc but didn't really know what was going on and just thought I was unwell.

My pain today was a 10/10 and it was everywhere, I could barely walk and I was exhausted (I fell asleep in the taxi) I messaged the doctors for the first time about it today as it was so bad (I nearly went to hospital because i genuinely thought something was really wrong but thought what could they really do)

The doctor gave me an appointment for half an hour later and examined me, he said they were going to do some bloodtests to rule out anything metobolical (I think he said) but suspects it may be fibromyalgia and that's terrified me.

My friend has it and she needs a stick and a wheelchair, I have two young children and were going to go back to college to train to be a hairdresser and I feel like everything's sort of been taken away from me like how am I going to cope with two young babies and have fibromyalgia.

I know I'm jumping the gun a bit but I don't know what else it could be, all the symptoms seems to be fitting.

Please can I have some positive stories from others who's been diagnosed with it, I just need some good news today I think.

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

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 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

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.

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.

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

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.

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.

Oh!

Thank you for the information everyone. I didn't realise a GP couldn't diagnose - I did ask whether I need to see a specialist or have anymore tests and they said no, it's now diagnosed in primary care and good luck basically leaving me to research pain relief etc no further help was offered but I was surprised it was given so quickly.

The symptoms do match but as others have said it could be other things.

Where do I start asking for more investigation, do I go back to the GP?

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.

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.