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?

What are you talking about? Your comment doesn't even make sense!

The research that I clearly linked is where I got my info. I never said it wasn't real either, wtaf.

And if you can't control your temper when you unintelligently disagree with someone, try taking a deep breath. I'm sure it'll help.

@OP I'm sorry for the 'explosion' and my part in it - and really sorry for what you're going through. I hope you get some answers and support with it.

100% there's a difference between fatigue and tiredness.

Fatigue is like the exhaustion you get when you have the flu. Very different to feeling shattered after a long day.

I believe you. You're not alone. Don't listen to people who don't know what they're talking about. Grieving the life you had planned is okay but don't get sucked down into despair. learn how to pace yourself, prioritise sleep, healthy eating and exercise. Avoid stress and overstimulation. Amitriptyline is the only medication that's helped the pain. Cocodamol makes it worse in the long run. 💐

Jesus Christ I NEVER SAID I WAS EARNING 89k I SAID I SPENT 89k on the fucking training!

Fourth time I’ve had to explain this now. The FOURTH!!!!! Pilots have to PAY for their flight training themselves!!!!

I'd love to tell you what I do for a living . But I won't waste my breath.

"Temper" 😆

If most people are walking around exhausted and in pain, then surely there's something wrong with the way we are living our lives? Something has to change. Life can't really be that awful for everyone, can it?

Exhausted people are not suffering like patients with fibromyalgia.

Exhausted people can cut down activities and improve their wellbring.
If you have fibromyalgia you can't.

Apologies, I didn’t word my post very well. You haven’t experienced chronic fatigue if you can believe the exhaustion from everyday life is the same as chronic fatigue. From the list that you have posted, you are tired from a busy life. I also am shattered from work, it is not the same as the chronic fatigue I feel IMMEDIATELY once j wake up from a decent night sleep. It doesn’t go away with rest. There is a difference because I feel it every day - one is tiredness, one is fatigue.

Not a single person is saying you can’t feel exhausted if you don’t have a chronic illness. We are asking you to try to be sympathetic that we have that exhaustion without being able to live a full life.

Do you think that I want to live like an 80 year old at 36? Do you think I want to calculate if I can do my favourite things without getting poorly and risking a flare? The last time I went to a gig, I ended up in a flare that gave me pneumonia.

Who was responding to you?! I def wasn't. Never even read what you said.

M opinion is that it is a word that's been applied to a set of symptoms when they can't figure out what's causing them. There is no test, they don't know if it's one thing, or many things, they don't really know what symptoms are the key ones, and they certainly don't understand anything about a disease history or how it behaves in the body, because you can't have that without those other things.

Because of all of those things you have people lumped under that label who may have totally different problems, from some kind of auto-immune disease to mental conditions.

I don't think it's a great option for scammers, too hard to get a diagnosis, there are easier ways to access benefits. But it's a great diagnosis for a narcissist or hypochondriac and I think the group does include an unusual number of such people.

Incy you’re 1000000% correct. You & I know it. He knows it but he’s just targeting you now. Nothing you say will get through, he’ll just keep negating everything you say and will then declare you as unhinged or embarrassing. It’s rage baiting. Ignore it.

This exhaustion carries on forever.
Flu passes in a few weeks.

I'm certainly not miserable, no. I've been in the depths of depression before. I'm not now thank goodness. Life is a gift. I'm ever so grateful for everything I have today. But I'm still freaking exhausted and have aches and pains, it's the human condition! Modern life in Britain is tough compared to other similarly wealthy European countries. I think it doesn't help matters.

But feeling exhausted, aches and pains and stress of modern life doesn't necessarily= miserable. You just have to count your blessings and suck up the shitty bits (well that's what I try to do anyway).

Please don’t confuse asking for clarification as troll hunting, they are two very different things. And it’s very dangerous to suggest people shouldn’t question glaring discrepancies for fear of being labelled a ‘troll’.

But yes, £89,000 spent by 18 to become a pilot was going to be a red flag. You are doing a disservice coupling that with rage and aggression. Pick your battles and really make your points stand on their own. Don’t just attack everyone.

You @ me ...

Perhaps it was a mistake?

Love, you outright accused me of lying about having Fibromyalgia because your own reading comprehension isn’t up to scratch. That’s troll hunting. You can attack me all you like but that’s a fact. You owe me an apology.

Also, thousands of pilots worldwide have that kind of money spent on flight training at age 18. 18-21 is the average age for most trainee pilots (though in Canada, you can start your training at 14 like I did!). Student loans now cover it in some places. Inheritance or parental help. No different than going to study abroad at that age.

I'm sorry @Booboobagins , it came up on my feed that you had responded to my post. I must have gotten that wrong. I'm sorry about that.

I used to work 12 hour shifts in a nursing home and latterly 2 weeks on 2 weeks off as a live in carer before a diagnosis, I know what it's like to be shattered but it's not the same as fatigue, it's like having the flu without the cold symptoms, your body and brain just refuses to work. You really have no idea !

@NotatallanamechangeYou did NOT “ask for clarification” and you know it. You outright accused me of lying about my diagnosis. Simply because you misread my post about flight training! 🤨

You're assuming I have no idea.

When I had depression I could have slept for 12+ hours a nights and want to go back to bed by mid morning.

I'm not ashamed to say it was secondary to 'depression' and it was a very real physical symptom. I never had time off work, so I had to muddle through the fatigue (and it was fatigue) but believe me I remember how it feels.

Seems my old label of 'depression' is an old fashioned one that nobody wants these days 🤨

It’s honestly exhausting trying to get these people to see that they are the one’s who are trying to diminish our pain and not the other way around. I have never once said to someone in my life “imagine having CFS/ME then” when they are talking about being exhausted from being a parent. I sympathise with them because I understand they feel exhausted - and that’s nothing to do with how I feel or my fatigue. However I can’t tell you how many times people have said to me “you can’t be tired if you don’t have children”.

then there’s “well it can’t be that bad if you manage to work” but then they are calling people who can’t work fakers or lazy. We can’t win - these people just think we are liars.

It is a diagnosis of exclusion but there are medications used and approved specifically for fibromyalgia. A diagnosis is generally important for anything official from reasonable adjustments at work to having to claim insurance or other disability related payments. It is also psychologically helpful to have a name to put on it even if they don't know fully know what the cause is yet. Lost my quote and too exhausted to find it again.

There are some truly nasty bigoted people on this thread. I used to say I wouldn't wish this on anyone but maybe 6 months of the constant agonising pain I've suffered for 20+ years might give these people some insight and make them better people. Then again maybe they're just arseholes. Diagnosis of exclusion doesn't equate not real, they just mean not enough is known yet by medical science. We once didn't know what cancer was or that cigarettes and asbestos could kill people. Didn't make what they died from less real, we just didn't know enough. Medical science needs to advance more until we do. GPs don't diagnose fibromyalgia, it has to be done by a specialist, usually rheumatolgjsts where I live. It is very real and recognised widely in different health systems worldwide.

There's a lot of contemptuous nasty behaviour towards those who are disabled, sick or vulnerable on MN right now. When things aren't going well for society at large, cost of living, people like to find a group to blame, somewhere to direct their negative emotions, its just another form of bigotry and exclusion and the people doing those things are the ones with messed up thinking not the people that are sick or struggling.

I don't imagine that this is what you hoped for from this thread. I can tell that you are feeling overwhelmed and lots of people sharing their completely subjective experiences and arguing probably hasn't done much to help you. I've got a few thoughts about how to move forward if you'd like them.

1. The people who cope with their fibromyalgia best really understand it and have a really wide range of things they do to manage it. They treat day to day life as an experiment and try to see flares as a learning experience, figure out what it is that triggered it and do something different next time. They are ruthless prioritisers (see point 3).

2. There is some crossover between ptsd symptoms and fibromyalgia, the body keeps score is a great book to find out more about this.

3. work out what is important to you and hold on to it. This can mean dropping other things. So many people who live with pain find that they prioritise what they feel they have to do over what they want to do and gradually all those enjoyable activities that are really meaningful give way to work/cleaning and sleep and your world becomes very small.

4. You've been trying to push through, it hasn't worked. The harder you push the closer you get to burning out. You need to start thinking about pacing yourself and finding some balance. You don't have to be so up and down, you can find a way to make life more predictable

5. Anything you do that involves looking after yourself will likely have a long term positive effect on your symptoms, but it may take a while to see results, so be consistent.

6. be very suspicious of people who make big claims about medications. For most people benefits are negligible and risks are significant.

So if you understand what fatigue is, why don’t you have any sympathy for those people who have a condition which causes it?