Fibro confusion : How many of you... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Fibro confusion

Namtox
Namtox

How many of you lovely people get so frustrated when you are having the worst day by feeling really down and full of pain and someone tells you how well you look. Inside you want to say how you feel but you end up thanking them whilst thinking if only you knew yet questioning in your head “are you just saying that to make me feel better” on a positive note with Fibro fog I never get board because I forget what I was up to and start again

129 Replies
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Hidden
Hidden

Hi,know the feeling well, and I love your positive point about fibro fog 😊, it can be a bit like the film groundhog day .

Take care and hope you get some sleep 💐

Namtox
Namtox
in reply to Hidden

I went from working 60hr weeks 14hr days and nights to being at home every day. I haven’t worked for 14 months and I’m not board. But your right it is like ground hog day and night lol

Namtox
Namtox
in reply to Namtox

I don’t find this illness fun but I do intend to make the most out of it, by not doing shift work is a good start.. where are you with all this

Hidden
Hidden
in reply to Namtox

I know what you mean it can get boring you try to do something but your body says are you joking!! mine you it can be amusing when you put something down and don't leave the room only to go and pick it up and poof not there spend five minutes looking like a mad woman then stop and tell yourself its here somewhere, once lost my phone only to find I was sat on it.

You worked some long hours it must be strange for you and you've got a lot to adjust to with all the changes.

Hope you get some💤💤night .

Namtox
Namtox
in reply to Hidden

And people moan about going upstairs to find they forgot what they went up there for.. I forgot what I was going to go up there for.. it’s never dull..

Hidden
Hidden
in reply to Namtox

Yes, that's me too!!

Ladame
Ladame
in reply to Hidden

If only people realised how much effort it takes to try and look "normal!" Whatever that is! !!😂

Namtox
Namtox
in reply to Ladame

I forgot what normal is, I used to plan what I was doing the next day. Now people don’t quite understand when I say I’ll let u know tomorrow. One thing I do know is that the first 2 hrs of being awake is when I’m at my best.

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

After last night ??? I’m absolutely cream crackered after earlier - this can’t sleep.com is seriously BAD!!! Good fun though eh 😂😂😂

Hidden
Hidden
in reply to Mr_Zoonie

And you sure are the grand master of fun and DJ 🤣🤣.

Mr_Zoonie
Mr_Zoonie
in reply to Hidden

🙏💕🙏💖

Hidden
Hidden
in reply to Mr_Zoonie

I bow down to the grand master jester🤣🥳🤣,

Hidden
Hidden
in reply to Namtox

Ohh, god you're luckier than me can't remember when I've been at my best, I've learnt never make plans for the next day unless I have to with appointments.

Hope you enjoyed last night's fun 🥳🥳.

Oh I don't do normal much I do daft!!!.

Hidden
Hidden
in reply to Ladame

Forgot what normal is 😄, and as for sleep uhh what's that????

Hidden
Hidden
in reply to Ladame

Hi, and welcome 😊.

Simple answer to them when they say something like that, Strange, you don’t look stupid but..... It’s sooo bl@@dy irritating isn’t it?

Namtox
Namtox
in reply to Mr_Zoonie

Lol I could have so much fun in a dark way.. I struggle by questioning whether I’m feeling ill or am I ill even ill tho we all know our own body

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

You just have to deaf them out 😂😂😂

It’s easier than trying to explain that you’re not!

Namtox
Namtox
in reply to Mr_Zoonie

Your right there 🤐

HiddenThis reply has been deleted
Namtox
Namtox
in reply to Hidden

It looks like it’s just us awake whilst everyone else is having sweet dreams

Hidden
Hidden
in reply to Namtox

Yep I think I've forgot what sleep is my sheep are always going on strike or falling asleep on me I'm around most nights wondering what sleep is

LoneEra
LoneEra
in reply to Namtox

Not just you 🤣

Mr_Zoonie
Mr_Zoonie
in reply to LoneEra

Yo LoneEra, come to join the party???

LoneEra
LoneEra
in reply to Mr_Zoonie

Yeah, but you two are having a love-in...I might have to leave 😂❤️❤️❤️❤️😂

Mr_Zoonie
Mr_Zoonie
in reply to LoneEra

Missed this, what are you incinerating???

😂😂😂

LoneEra
LoneEra
in reply to Mr_Zoonie

I know I “bromance” when I see one 💋🤣🤣🤣

Mr_Zoonie
Mr_Zoonie
in reply to LoneEra

😂😂😂

Hidden
Hidden
in reply to Namtox

Surprise surprise, it's me again!! Not sleeping as per usual?!

Mr_Zoonie
Mr_Zoonie
in reply to Hidden

Yup, anyone for a giggle?

Hidden
Hidden
in reply to Mr_Zoonie

Well I know I am what you got in mind

Mr_Zoonie
Mr_Zoonie
in reply to Hidden

Interesting cover of get ready

Namtox
Namtox
in reply to Mr_Zoonie

Always for a giggle.. what are sheep ?

Hidden
Hidden
in reply to Namtox

Sheep are funny little things, as in baa baa black sheep the nursery rhyme, the site UK but we have members from the USA all over,

Namtox
Namtox
in reply to Hidden

Either I have forgot how to count or my sheep are on a bus mans holiday.. That’s good to have a range of backgrounds.. I’m from essex

Mr_Zoonie
Mr_Zoonie
in reply to Mr_Zoonie

It’s the Four tops nope copyright Jess Glynn instead!

Namtox
Namtox
in reply to Mr_Zoonie

I can’t view this. It could be my phone

Hidden
Hidden
in reply to Namtox

It's very good, though!! Xx

Is this a Uk site ? I’m assuming it is and everyone is from the Uk

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

It’s copyright, found one now

Namtox
Namtox
in reply to Mr_Zoonie

Seen it now .. did u know Lady Gaga has fibromyalgia?

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

Yup, I’m a mine of assorted information 😂😂😂

Namtox
Namtox
in reply to Mr_Zoonie

Like wise.. a mind full of useless information

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

I’ve got talent as well, this is me!

drive.google.com/file/d/184...

Painny
Painny
in reply to Namtox

Honestly ....could not stop giggling, for a minute I thought he/she knows what I have in mind 😁😁😂😂😂🙃 useless information 😉😍

Hidden
Hidden
in reply to Mr_Zoonie

Can't get it to play!!

Chillix
Chillix
in reply to Namtox

Really - how on earth does she cope with yours and all that moving about on stage?

This is going to be crrraaazzzzyyyyy

HiddenThis reply has been deleted
Namtox
Namtox
in reply to Hidden

That’s was amazing.. I couldn’t open yours.. again it be me

Mr_Zoonie
Mr_Zoonie
in reply to Hidden

Try this

Namtox
Namtox
in reply to Mr_Zoonie

I like that

Hidden
Hidden
in reply to Mr_Zoonie

Brilliant!!

Hidden
Hidden
in reply to Mr_Zoonie

I'm awake too, now there's a surprise!!

This young woman is better than me though and a bl@@dy sight more attractive 😂😂😂

Hidden
Hidden
in reply to Mr_Zoonie

I like this one, thanks Zoonie

Hidden
Hidden

Zoonie is also are DJ !!!!,he does a good crazy welcome to the mid night madness it helps get though the night oh do you know are your sheep going anywhere nice?🐑🐑

Namtox
Namtox
in reply to Hidden

He.. what there’s another male out there that has Fibro ?

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

Yup, all 68 years of me!!!

Namtox
Namtox
in reply to Mr_Zoonie

I’m 49.. my rheumatologist apologised that I was male and had a syndrome that women get lol.. I don’t think it has a preference lol.. but I haven’t found another male out there so far

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

There’s a few of us!

Mr_Zoonie
Mr_Zoonie
in reply to Hidden

Ermmm

Hidden
Hidden
in reply to Mr_Zoonie

I like this, thank you. You are a great DJ!!

Hidden
Hidden
in reply to Hidden

Yes, I agree!!

Come on more inspiration needed

Namtox
Namtox
in reply to Mr_Zoonie

80’s

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

Try again

Namtox
Namtox
in reply to Mr_Zoonie

Wow. I love but have never seen that video

Namtox
Namtox
in reply to Namtox

*Muse

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

These young ladies are just sooo good, will show you what they are like now in a bit, They’re doing a UK tour towards the end of the year!

Mr_Zoonie
Mr_Zoonie
in reply to Mr_Zoonie

Here they are now- off their 2 albums

Hidden
Hidden
in reply to Mr_Zoonie

Now, that's more like it!!

Hidden
Hidden
in reply to Mr_Zoonie

Now I can't play that video ☹

Hidden
Hidden
in reply to Mr_Zoonie

It says video unavailable!!

Namtox
Namtox
in reply to Hidden

I think the DJ has left the building

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

Nope just searching for more

Mr_Zoonie
Mr_Zoonie
in reply to Hidden

Which one, it’s all mixed up

Namtox
Namtox
in reply to Mr_Zoonie

I don’t know.... who am I 😭😭😭😭

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

😂😂😂

Hidden
Hidden
in reply to Mr_Zoonie

Don't know, now!!

Mr_Zoonie
Mr_Zoonie
in reply to Hidden

😂😂😂

Got you all confused now!!!

Hidden
Hidden
in reply to Mr_Zoonie

Brilliant,!!

Hidden
Hidden
in reply to Mr_Zoonie

Well if Lynne was here she'd say Meatloaf, hope she's getting some sleep, inspiration needed pass next question please anything you've got good taste

Namtox
Namtox
in reply to Hidden

Eurythmics

Hidden
Hidden
in reply to Namtox

Good choice

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

Try this

Hidden
Hidden
in reply to Mr_Zoonie

I love this one!!

Hidden
Hidden

Hi

Yes, I know what you mean. When we bumped into a couple of friends a few weeks ago, they asked how I was so I said not so bad!! Hubby then stepped in no, tell them how you really feel which is s*** and then he told them how I was really feeling!! Take care e

Namtox
Namtox
in reply to Hidden

And that is so true.. it’s easy to say no I’m having a shit day but then we’re seeking sympathy so we say no we’re good and it’s ok.. I would like to say it’s because we’re English but I reckon everyone is like that worldwide

Hidden
Hidden
in reply to Namtox

I could understand where hubby was coming from, though. At least he tries tob understand this crazy illness. He's my rock

Namtox
Namtox
in reply to Hidden

Wish I could say the same my partner ran away as she couldn’t understand the changes from day to day.. on the positive side, I have less stress

Namtox
Namtox
in reply to Namtox

At least now I can stay in bed all day without having to explain myself

Hidden
Hidden
in reply to Namtox

My hubby will say you aren't well, you've got to grab some sleep when you can, he's brilliant!!

Namtox
Namtox
in reply to Hidden

That’s quality.. I understand why people don’t get it.. but it does feel a little unfair.. I broke my foot a few years ago and had a boot and people understood because they see the boot

Hidden
Hidden
in reply to Hidden

Hi Lynne , sorry to hear from you means the sand man missed you again 😭, tried to get Zoonie to play Meatloaf think he's having trouble with copyrights, feeling better know you had rotten morning, now rotten night ☹💐xx

Mr_Zoonie
Mr_Zoonie
in reply to Hidden

How about

Hidden
Hidden
in reply to Mr_Zoonie

That was good is there no end to your talent!!😊

Hidden
Hidden
in reply to Hidden

Hi.

I'm coming off now as I just need to snuggle up with my hot water bottle and electric blanket, pain is too much. Love and hugs Lynne xxxx

Hidden
Hidden
in reply to Hidden

Take care snuggle up warm and get some sleep,

Love and hugs Michele xx

Hidden
Hidden
in reply to Hidden

Thank you. Don't think I will sleep but I'm finding it hard to message when I'm in pain. Thank you all for your continued support. Love and hugs Lynne xxxx

Hidden
Hidden
in reply to Hidden

Always here for you Lynne,

Get some rest and hopefully some relief 💐😊❤

Xxx

Hidden
Hidden
in reply to Hidden

Thank you, always here for you too. Love and hugs Lynne xxxx

Hidden
Hidden
in reply to Hidden

Go be a snuggle bunny 🐇get warm

Love Michele xxx

Mr_Zoonie
Mr_Zoonie
in reply to Hidden

You still here?

Mr_Zoonie
Mr_Zoonie
in reply to Hidden

Just listen then

Hidden
Hidden
in reply to Mr_Zoonie

Good idea!!

Mr_Zoonie
Mr_Zoonie
in reply to Hidden

Try this

Hidden
Hidden
in reply to Mr_Zoonie

Hi

Thank you but didn't work for me!! Take care Lynne

Too many copyright violations

Namtox
Namtox
in reply to Mr_Zoonie

Relax Frankie goes to Hollywood.. probably my 2nd fav to atomic blonde

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

How about

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

And this

One of my favourite tracks of all time

Namtox
Namtox
in reply to Mr_Zoonie

Gwen stefani stopped producing far too young

Mr_Zoonie
Mr_Zoonie
in reply to Namtox

Absolutely!!!

Hidden
Hidden
in reply to Mr_Zoonie

Never seen her before but she's good!!

OK, so who’s left?

Lol....I went to see the hospital dietician yesterday and was actually having a rare good day. The dietician started off by saying " I do not think you should be here to do not look well at all!" My thought was if I look that bad on a good day what must I look like on a bad day. She then made my wife's day by saying are you here with your daughter? My thought was I must look bad as my wife is not that many years younger than me. Being told you look well may be a little white lie and annoying but being told how bad you look is far more worrying...Lol...Hopefully the fog will make me forget.

.I did not join you last night as I was shattered and managed some fake sleep but reading the comments from start to finish was fun fun fun 😀😁😂😂🙈🙈🙌🙌 this morning

Wow...Namtox you have an excellent sense of humour (as well as Zoonie) 😅🤩

Namtox
Namtox
in reply to Painny

Thank you very much, maybe another night. You have to keep laughing as life is too short. Although I do have my down days 😂😂

Mydexter
Mydexter
in reply to Painny

Me neither Painny , looks like we missed all the fun 😂😂

Painny
Painny
in reply to Mydexter

Sure we did, missed the fun but will listen to all music by our rock star 🌟 fibro in due course 🤩😍

Me to I was on twitter, darn, I hate missing a good laugh. xx

Mr_Zoonie
Mr_Zoonie
in reply to bobbybobb

Twitter!!! That’s sinful 😂😂😂

bobbybobb
bobbybobb
in reply to Mr_Zoonie

I've only been on it about 3 or 4 weeks. x

Mr_Zoonie
Mr_Zoonie
in reply to bobbybobb

I’m on Farce book, been on it for years but did a complete reset when there was the fuss about that data breach!

I've been in so much pain for years and sometimes just someone knocking into causes extreme pain...I had a shop worker few weeks ago who rammed her trolley into me and just laughed while saying sorry...that kind of thing makes me really angry as I was then in agony. Its only recently after being to drs thousands of times taking 180mg of morphine a day and large amounts of antidepressants that I'm finally being listened to and agreed that it is fibro. My memory after being amazing for years is barely existent now and the IBS side is agony I barely eat as whatever I do eat leaves me doubled up and invisible illnesses are the ones people dont understand until you have one. People say u dont look like ur in agony ...well that's because I do have a high pain threshold and I try my best to smile and not let people see how depressed I am. The days I can barely lift my feet to work my car is my lifeline everyone knows that I can lay back on cushions and have a social life. Anyone got any help with IBS side? I'm sick of living on nothing or on odd occasion when I have a jacket potato or something simple I will just be in agony and wish I hadn't. Has anyone tried counselling or cognitive sessions? Years ago I know they tried to say fibromyalgia was just in our heads.

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