Fibromyalgia - be honest.

[Hellovation]

I think I’m going to be diagnosed with fibromyalgia.

I had never heard of it, until the neurologist and GP both mentioned it.

Having now mentioned this to a few people and their reaction leaving me confused, some internet searches lead me to believe it is widely believed to be a non diagnosis and simply something in one’s head or a ‘lazy diagnosis’ because doctors are at a loss.

I was heartened to think I might have a diagnosis and understanding and way forward to get better and live my life but now I feel so sad.

Be absolutely honest- what do you think of fibromyalgia?

Honestly, I think it is a b12 deficiency.

I think knowledge about b12 is woeful and the NHS treatment path is so low -that even when given the amount they do you do not get well - so write of the importance of b12.

I think if your B12 and folic acid level (the two work together) were high enough you would feel well enough to function some of the time

That said most of the folks I have met with fibro are 'stuck' and are not ready to fight to make themselves better.

The WHO class ME/CFS as a disorder of the nervous system, or a neurological disorder.

I do not have the ME because I’m depressed; I get down because I have ME. There is a massive difference.

And your ableist posts aren’t helping anyone either!
In my trust, GPs cannot and will not diagnose it! It is diagnosed by MRI.
Stop telling people that a neurological disorder is imaginary.

But they are women I take it…..80% of autoimmune conditions are in women.

Haven’t even read all this thread but some of the comments I have read are ableist bullcrap -

signed a person with ME who is LUCKY to be well enough to still be able to work full time.

@HÆLTHEPAIN👏🏻👏🏻👏🏻👏🏻 Thank you!

This picture sums up fibromyalgia and similar/related conditions perfectly (hypermobility and hypothyroidism being the ones that affect me).

OP - I think a diagnosis is mostly helpful to feel validated. It doesn’t provide a cure, but provides a reason for all those symptoms in the photo, and reassurance that you’re not lazy or a hypochondriac. I don’t really share my diagnosis but it does help me personally.

It can be diagnosed by gps now, I am a rheumatology specialist.

Our trust no longer accept suspected fibromyalgia cases into rheumatology unless they have suspected inflammatory markers. It is heading that way across the country now, uk.

You assume it’s mostly psychological based on your anecdotal evidence of 2 people you know.

From your description that sounds like endometriosis could be playing a part here. The stabbing and tingling, tiredness and also an inflammatory condition vastly misunderstood.

Anecdotal, but my mum told me a story recently about her friend. Her friend has multiple issues and has also been diagnosed with fibromyalgia as they couldn’t come up with why she had the pain and issues that she has.

recently, her daughter has been told she has hyper mobility in her joints, and the myriad of “symptoms” this can cause (many of which were bizarre and would seem like nothing to do with hyper mobile joints! I’m sure one was eye related!) were often the same as the ones her mum experienced. They also said hyper mobility can be genetic.

So, just a random possibility there for you - hyper mobile joints potentially causing similar symptoms to those being diagnosed as fibromyalgia.

you do know that we have regular blood tests to determine that our B12 and iron are sufficient? I literally have about 3 blood tests a year..

How did you overcome the chronic fatigue then?

Do you not think that you may have been one of the 'lucky ones'?

Did you take a lot of speed?

Sorry, its all getting too serious for me!

Same. I’m sat here in tears. I qualified as an airline pilot, £89k later and bam! Diagnosed with Fibromyalgia & ME and career gone. It’s automatically excluded where I am.
But apparently according to these overgrown playground bullies, it’s ‘all in my head so I could make a pip claim” - yeah because PIP really outshines a Pilot salary. 🤨

You're really not helping anyone with fibromyalgia, you're so angry you're arguing with someone who was diagnosed with fibromyalgia by a rheumatologist and had to go on disability 🤷‍♀️ I would very much welcome a real diagnosis and what you say about it being a neurological condition and the short google I just did makes perfect sense. I was just like for some sort of research link.

I believe it’s linked to autoimmune diseases, more likely in females too.

I’ve many female family members with the diagnosis who also have conditions like Colitis and ankylosing spondylitis.

The person I know who has been diagnosed with fibromyalgia did not have any brain imaging tests carried out.

As others have said on this thread, they are a middle aged female with very high BMI and a history of depression and poor mental and physical health. I also believe that the doctors diagnosed this because they had no other answers and wanted to give a diagnosis.

I have to be honest and say this makes me doubt the validity of the diagnosis (whilst not doubting the pain and symptoms). If it's neurological, how are doctors diagnosing it without any form of brain imaging?

Yes, they are both women.

I'm sorry, but I'm going to have to correct you.

Heart attacks are not linked with stress.

They're linked to high cholesterol (particularly LDL/triglycerides) high blood pressure, diabetes obesity and smoking. Having a first degree relative who sustained a heart attack aged under 60 can increase your chances. All of these are risk factors.

Stress doesn't cause heart attacks. It can Contribute to poor coping mechanisms (smoking, poor diet), and raise cortisol but it doesn't cause heart attacks.

It's important not to misinform.

If you really are a Rhuematology specialist then why the absolute FUCK aren’t you defending us on here? You will know yourself for a fact that it’s a neurological disorder so why aren’t you making this clear?

I beg your pardon?

I have heard that many people diagnosed with fibromyalgia often end up diagnosed with hyperparathyroidism, a condition where you have a problem with your parathyroid glands and may have raised calcium and/or raised parathyroid hormone. The symptoms for both can be vague - depression, aches and pains, brain fog, fatigue, osteoporosis and sometimes breaking bones.

What on earth are you talking about ? I definitely don't have endometriosis, it’s a bit of a leap 😁

She's possibly not defending you as fibromyalgia is not a neurological disorder.

It's a functional syndrome.

That's not unkind. It's just a fact

@DukekaboomSo you know better than the World Health Organisation do you? You’d better pop them an email and tell them they’re allllll wrong. Dukekaboom on Mumsnet knows better “coz he sez so”