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AMA

I have Fibromyalgia AMA

223 replies

brightonbeautifull · 10/03/2019 21:06

Ask me anything!

OP posts:
MegaBat · 11/03/2019 21:42

What makes you think I'm young? I'm not - depending on your definition of young of course. I'm very firmly in my 40s.

I don't doubt the symptoms. I don't think people are making it up. But the evidence is just bloody overwhelming that sufferers from this condition are, in the main, Facebook spoony meme sharers. And I'd be interested in learning why this is.

There is no other illness that is meme-d so much. Daily whinges etc.

And nobody can answer why thy might be. Strange

Tolleshunt · 11/03/2019 22:01

My mother has it and researching it has become her hobby. She spends hours looking for looking it up on the internet, joining self help groups and the like."

Does it never occur to the likes of you and MegaBat that the reason somebody might be doing this is that they are in utter despair at having their health and whole life ruined by an illness that nobody has a cure, or even an effective treatment for?

How desperate do you think you would feel in that situation? Do you think you might take the initiative to Google the fuck out of the condition, in desperate hope that you might find something that might help, or even cure it?

Does it occur to you that people might want to join support groups to accept and offer support to those who really get it? As opposed to all the nasty people sneering at them? Do you realise that being chronically ill, trapped and thwarted is incredibly lonely? It can be soul-destroying.

MegaBat do you get the irony of people like you - who are not in any way affected by it - being annoyed at the sharing of memes and the like? Has it ever occurred to you that if you and your ilk were to open your minds, accept peoples' suffering and extend some compassion towards it, that they wouldn't feel such a strong need to bang the drum on raising awareness? You are part of the 'problem' (as you perceive it), here.

And just why does it annoy you so much that somebody wants to raise awareness of the illness that is disabling them, anyway?

motherofdxughters · 11/03/2019 22:10

@Ohallright I got better. I'm still in pain but I'm in manageable amounts of pain now, medication free aside from over the counter paracetamol and ibuprofen when it's really bad. It got better when I took back as much control as I am able - I got therapy, I exercise daily, I'm in control of my diet (ie. I don't eat as much or as much crap as I used to) and I avoid too much stress.

There are ways of coping. It took me eight years of spiralling for something to finally click and I dug myself out of the hole. I have hEDS and fibro together so the pain and dislocations will never go away but the power of the mind is astonishing and once you harness more control over the way you react to pain, it can get easier.

I'll also mention that medication made me worse. Not in the sense of pain but in fatigue, general tiredness, general depression and anxiety, insomnia combined with fatigue, nausea, IBS and headaches. Once I'd weaned off all the medication I had a baseline of pain and how I would feel day to day and I could work from that. When I was taking stupid amounts of pregabalin, omeprezole, tramadol, naproxen, codeine, gabapentin etc together it just made everything an absolute nightmare.

This obviously isn't the case for everyone. I have friends who have hEDS who cope far better than I do on medication and I'm doing just ok. I always think of going back on meds during rough times but then realise the hell I had finding the right balance and then weaning off them and think - no chance!

PuddingsAreMyJam · 11/03/2019 22:13

From what I've observed from people who I know who have fibro is, is that 'good' days usually coincide with a night on the town or going on holiday and 'bad' days coincide with something they don't want to do. As someone said upthread, it gives people an excuse to opt out of things they don't want to deal with.

I've already said that my dd has a chronic illness that she will likely die from and as far as I'm aware, no one has yet to die from fibromyalgia so yes, I am fucking aware of what it's like living with a chronic illness.

don't doubt the symptoms. I don't think people are making it up. But the evidence is just bloody overwhelming that sufferers from this condition are, in the main, Facebook spoony meme sharers. And I'd be interested in learning why this is.

There is no other illness that is meme-d so much. Daily whinges etc.

I agree with everything megbat has said so far. This is something I'd like to know too.

Weetabixandshreddies · 11/03/2019 22:22

MegaBat

I have a friend like this too - constant memes posted on facebook, updates and check ins from frequent hospital appointments, regular updates about pain, how she's feeling today...


She has breast cancer. Just finished chemo and is now undergoing radiotherapy.

But obviously, the fact that she's failed your facebook test means that it's all in her head according to you.

Have you not thought that people post like this because they need to be heard? They need someone to acknowledge that their life as they knew it has ended? I can't believe some of the attitudes that I'm seeing on here. No wonder they are calked invisible illnesses.

Tolleshunt · 11/03/2019 22:26

Puddings, it's no mystery. People with chronic fatiguing illnesses often rest before and after a big event, so that they can attend it and not miss out. When you are missing out on so many things, it is really important from a MH point of view to have something to look forward to. Causal observers will not see the five days of bed or sofa rest that follows the night out, so their perception is that the person is unlimited in reality and is exaggerating their illness.

Contrary to the rather snide insinuations on this thread, many people with illnesses like fibro do not make a meal of broadcasting their symptoms and limitations, and will instead play them down. This has the unfortunate effect of causing observers to think they are putting it on.

They can't win, really. If they make people aware of just how much they are limited they get people complaining of them whinging, seeking attention, being a drama queen, putting memes on facebooks etc. If they remain stoic and play it down they get accused of malingering.

What do you think they should do? What behaviour would meet your approval?

FuckItFriday · 11/03/2019 22:40

Megabat... are you ok? You seem a bit invested in this and rather touchy.

Oh and rude as fuck.

Chocolatedeficitdisorder · 11/03/2019 22:42

Do you think that anyone can be diagnosed with fibromyalgia if they chase the diagnosis enough?


I think this is the case.

I was diagnosed with Fibro 10 years ago after seeing a Rheumatologist. I didn't have Fibro and pushed for a more correct diagnosis, which required me to demand a Vit D blood test. It turned I had undetectable levels of Vit D in my blood, as well as hypermobile joints. The pains improved after treatment.

10 years on and I'm back in pain, and my Gp tried to trot out the Fibro diagnosis again. This time it's been found that I have two different sets of auto-antibodies, one of which relates to a connective tissue disorder. It can be a long road to be diagnosed with Autoimmune disease, but they're for real.

MegaBat · 11/03/2019 22:45

@Weetabixandshreddies what are you talking about? There is no test. And breast cancer is not spoony stuff.

@PuddingsAreMyJam Sorry to hear about your DD. How tough for you. I've had a hard time too lately so maybe reading yet more whinges from spoons people is the final straw eh?

For the hard of reading - I believe your symptoms. I believe it's misdiagnosed OR it's a mental health issue. And again - not one person can answer why it overwhelmingly has an army of sufferers who lead chaotic lives, post non stop about it and share memes about how a shower means they need to lie down for a week but then, their next Facebook update is all about sex with their new bloke. I read this not half an hour ago from an acquaintance on Facebook

Go figure

MegaBat · 11/03/2019 22:46

@FuckItFriday I'm fine. Steady now - wouldn't want you to run out of spoons

FuckItFriday · 11/03/2019 22:51

You're quite obsessed with these spoons. You are the one going on about them!

Do you know where the soon analogy originated? Someone was in a cafe with a friend and was trying to explain what it felt like to have such limited energy levels. She used the spoons that were on the table to demonstrate what she was trying to explain.

I don't think anyone claimed it was a medical measure.

Anyways... I'm glad you are fine.

Just rude then I assume?

Why is that?

Tolleshunt · 11/03/2019 22:53

it overwhelmingly has an army of sufferers who lead chaotic lives, post non stop about it and share memes about how a shower means they need to lie down for a week but then, their next Facebook update is all about sex with their new bloke. I read this not half an hour ago from an acquaintance on Facebook

You don't know this! All you know is that the people you know of appear to be doing this. Your friendship group is not necessarily representative. And by definition you will not be seeing anything from those who choose not to discuss it on Facebook.

Have a google of 'confirmation bias'. If you take the trouble to truly engage with the content (properly, I mean, unlike the way you have dismissed everything on this thread that doesn't corroborate the ideas you already have), you may find you have been prone to errors in your view of this.

Not sure why you're so angry and judgemental about it, anyway. What's it to you?

MegaBat · 11/03/2019 22:53

Yes I know where it originated from. See it often enough on Facebook. And LOL at you calling it an invisible illness. Nothing invisible about it from where I'm standing

Why am I rude? Can't help myself when faced with whinging meme-rs

UncertainPerson · 11/03/2019 22:54

Lots of judgy pants on this thread, fibro is thought to result from inflammation in the brain. Not too surprising that a life of daily pain may trigger depression and anxiety!

Thank your lucky stars if no-one you know has it or you can continue to snigger at your neighbour or whatever. It won’t kill you but it’s still super shit.

(Though I also hate the purple memes Grin).

www.webmd.com/fibromyalgia/news/20181004/fibromyalgia-pain-is-real-brain-scans-suggest

Weetabixandshreddies · 11/03/2019 22:54

@MegaBat

What I'm talking about is your assertion that only people with a non existent illness would post lots of memes and updates on Facebook. I'm giving you an example of someone with a very real illness who posts exactly what you are describing.

MegaBat · 11/03/2019 22:57

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Tolleshunt · 11/03/2019 23:00

Someone dribbling on about how exhausting lying on the sofa is and how it'll wipe them out for a week - less sympathy. Actually zero

Wow. This is incredibly mean, and offensive. If this is how understanding and compassionate you are with people IRL I'm surprised you have any friends to view Facebook statuses of. Unless, of course, you are just a silly keyboard warrior.

FuckItFriday · 11/03/2019 23:02

I mentioned nothing about invisible illnesses.

You've been on this thread since early this morning, having dragged the conversation down to your level within minutes of it being posted and have silenced the OP with your shitty comments. You pleased with that outcome?

You were the first and have been pretty much he only person to mention spoons!

It's really weird that you are so... so invested.

You ok hun?

MegaBat · 11/03/2019 23:03

@Tolleshunt I've got lots of friends. Amazingly so maybe

MegaBat · 11/03/2019 23:04

@FuckItFriday I haven't been on the thread since this morning. Do you mean I posted this morning and then posted again several times? You make it sound like I've been glued for 12 hours.

Bouchie · 11/03/2019 23:05

Ignore Megatwat. They are probably a climate change denier too.As much as I hate memes I hate shit stirrers more.
FM has several documented biological markers including certain types of cytokines, and RA factor.

FuckItFriday · 11/03/2019 23:06

I think mega has had quite enough attention.

The OP started a AMA and some weirdo has dominated it in a bizarre manner. We should focus back on the OP.

Hope you're still with us...

OP have you found people in general are understanding?

UncertainPerson · 11/03/2019 23:08

Don’t feed the troll, people!

MegaBat · 11/03/2019 23:11

Just because I vehemently disagree with t

Tolleshunt · 11/03/2019 23:11

Fair enough about not allowing the troll to bait us or shit stir. They are obviously either too thick to take on board new information, or determined to cause hurt. Either way, it's obviously a waste of time to engage.

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