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?

regarding the comments, I know very, very slim women with fibro

That's why I said some. B12 serum testing is not always accurate or reliable. B12 and zinc deficiency are also common with coeliac disease which spins right back to autoimmune involvement which may be overlooked. As PP have mentioned, autoimmune disorders often cluster.

Hahaha the projection! I’ve had quite enough people on this thread back up everything I’ve said on this subject and many have called you out on your ableist bullying so you can be embarrassed of me all you like but it’s yourself you should be embarrassed of. Your unhinged behaviour towards the women on this thread is nothing short of appalling. You should hang your head in shame, both of you

I definitely agree with some of this...
Women, and particularly overweight women are often dismissed by health care professionals. I've heard so many stories of people who present with pain and tiredness and get told its their weight or the fact that they have children with no further investigations.

But, taking a history and looking at clinical signs and symptoms is very effective. Generally, you get the majority of your information from the clinical history and by the time you are running a test you are confirming what you know. Inflammatory arthritis has clear signs and symptoms and a very well defined referral criteria to say who needs to go to rheumatology. There are a small number of people whose presentation is vague and changes/develops over time who may be disadvantaged by a fibromyalgia diagnosis but a GP should bear in mind that a fibromyalgia diagnosis doesn't protect you from developing rheumatoid arthritis later on.

I think that GP is the right place for most diagnoses of fibromyalgia. It doesn't help anyone to wait for 10months to see a rheumatologist, to be told that it's fibromyalgia and there is nothing that rheumatology offers to manage it. The diagnostic criteria and required bloods are clear, there isn't any reason a GP shouldn't be able to diagnose.

@OldCottageGreenhouse GPs do diagnose fibromyalgia. Your post is incorrect. The person I know who has fibromyalgia was diagnosed by their GP. I think you owe an apology!

My yd was diagnosed with fibro a couple of years ago, in her early 20s, but she has had symptoms pretty much since she could remember but didn't realise this wasn't normal for everyone. She wasn't diagnosed by her rheumatologist, they don't believe in fibro, but she was diagnosed by the pain clinic. She has several other conditions namely JIA, PCOS and has hyper mobility. The JIA, HM and fibro all have different ways they cause her pain. She too has recently read that it is thought fibro is a neurological condition.

Incidentally, my ed has CRPS which used to be thought of as in your head and not real and now drs realise it is a real condition. Now if they'd find a cure, I'd be most grateful.

Hi, just to note, she didn’t say that she earned £89k, she said that it had cost £89k to get her pilots license (which sounds realistic)

Careful! Disagree with him and he’ll be telling you he’s “embarrassed for you” 🙄🤣

Excuse you? I don’t owe you or anyone an apology! Nobody I know was diagnosed by a GP including myself.

Maybe don’t share private information in a public thread if you don’t want someone to bring it up in said thread.

On what basis? So you’re accusing me of STALKING you?! Because I’m defending myself? Are you quite alright love?

From your own screenshot link

And what private information would that be? My career info? That was 25 years ago! 🤣🤦🏼‍♀️

Ah, well if you don't know anyone who has been diagnosed by a GP, it can't possibly be true then!

Much like if I don't have fibromyalgia, I don't believe it's a real condition. That follows...

Waaaaaahhh?

you said you qualified as a pilot and earnt £89k before your career was ruined. What are you talking about??

Same. I’m sat here in tears. I qualified as an airline pilot, £89k later and bam! Diagnosed with Fibromyalgia & ME and career gone

Thanks for clarifying

We also get tested for coeliac disease when having our bloods done…
I really think you are underestimating how many blood tests we have done during diagnosis (and post
diagnosis) and how long a diagnosis takes to get. Even if B12 serum testing is not always accurate, I must have had at least 12 blood tests in the past 5 years and god knows how many since my diagnosis 11 years ago. I imagine this will be similar for others with ME/fibro too.

Again, your reading comprehension needs work. Read what you have quoted darling!

I SPENT! S P E N T £89k on flight training. Pilots have to pay for their OWN flight training and licences before even applying to airlines. So I SPENT 89k on flight training and just as I was about to take my ATPL, I was diagnosed.

What is wrong with you?!

I wasn’t diagnosed until my early 50’s but think had being definitely going on since my early 40’s if not before. I think it was a combination stopping smoking ( allowed bp to go up) menopause, stress in work & family & personal life. I even had my family saying I was making it up my manager at work saying I wasn’t being truthful. You know you feel unwell. I lost all of my high pitch hearing in my 40’s only a decade later I can now put a reason rather than playing music too loud. Only picked up when I went to A&E with chest pain ( turns out it was gall stones) but from there picked up kidney disease from there autoimmune bloods were positive, from there as time goes on more AI conditions present. Having worked in the nhs I was shocked how dismissive male doctors are of women took me by surprise I have lost my shit at 2 of them. Sometimes just ask how they are doing it would mean so much to them just listen.

My partner was recently diagnosed with fibro just over two years after he was hit by a car as a pedestrian. He was 30 yo fit and healthy before this and now has Fibro, IBD and PTSD. I’m really wondering how it’s all linked with his accident to now.

A friend was misdiagnosed with fibromyalgia for many years but ultimately was diagnosed with MS.

I'm sorry to hear this, OP.
A family member has received this diagnosis by her rheumatologist following vaccine injury which has triggered autoimmune issues. It's so frustrating; this person has always worked and is a virtuous paragon of healthy living. Luckily, they've found that low-dose naltrexone greatly relieves the debilitating pain which has brought her life to a standstill -she's now able to be moderately active for longer periods. No MH issues, btw.
Wishing you all the luck!

I think the people who have it believe it to be a very real thing but that the diagnosis literally means they have exhausted all other options of what could be wrong.

This... also the fact that cbt has been shown to be one of the more effective treatments implies there is a psychological or psychosomatic element

I am not a pilot nor have I ever trained as a pilot and therefore do not know the logistics of it. Therefore, as many others did I read your post as saying you earnt £89k. At no point previously did you state ‘spent’ as you’re screaming at me in caps.

Why are you so aggressive?

Also, could you just pop a link to the WHO stuff you were talking about earlier

I disagree completely, Velmy.
Fibromyalgia sure as hell exists as a physical thing. It can often be traced back to a physical injury, an accident, from which the body never fully recovers, so it is left vulnerable to further ongoing small-scale daily damage from everyday activity, which results in pain and fatigue.

It used to be called FMS, Fibromyalgia Syndrome, and I think it's useful to go back to that idea of it being a cluster of symptoms.

Not all sufferers have all the symptoms, but there are commonalities - the fatigue, as in limited stamina; pain not in the joints but where the soft tissue attaches to the bone; migraines; some difficulty with words and comprehension; flu-like symptoms on waking; etc.

I don't believe there is any treatment, for the simple reason that if they don't know the cause, it's hard to know how to treat the illness.

My advice, OP, is to analyse your symptoms in detail, and see if any of them have a different explanation, and can be treated. Some things may not be related to FM at all, and it can happen that manageable conditions go unchecked because they get swept under the carpet of 'Oh it's just part of FM'.

What's left is the FM. There is no cure, only living with it and through it. The most important thing is to keep active, keep moving, keep exercising, keep walking, keep swimming, anything - inactivity and immobility are the enemy.

Exercise reduces pain- even if feels like a struggle, get moving, get active: the pain on waking, or on exercising, actually eases as your body loosens up.
FM does not affect the joints, so any pain felt on starting to move is stiffness in the soft tissues, you're not doing any damage to anything, and the pain will get better not worse if you push through it.

Mobility: use it or lose it!

Wishing you well, OP - eat well, stay positive.. but above all staying active and mobile, even if it feels like a struggle.