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

Fibromyalgia Action UK

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Fibro confusion

Namtox profile image
84 Replies

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

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Namtox profile image
Namtox
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84 Replies

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 profile image
Namtox in reply to

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 profile image
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

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 profile image
Namtox in reply to

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..

in reply to Namtox

Yes, that's me too!!

Ladame profile image
Ladame in reply to

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

Namtox profile image
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.

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!!!.

in reply to Ladame

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

in reply to Ladame

Hi, and welcome 😊.

Namtox profile image
Namtox

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

Namtox profile image
Namtox

Your right there 🤐

Namtox profile image
Namtox

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

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 profile image
LoneEra in reply to Namtox

Not just you 🤣

in reply to Namtox

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

Well I know I am what you got in mind

Namtox profile image
Namtox

Always for a giggle.. what are sheep ?

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 profile image
Namtox in reply to

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

Namtox profile image
Namtox

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

Namtox profile image
Namtox

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

in reply to Namtox

It's very good, though!! Xx

Namtox profile image
Namtox

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

in reply to Namtox

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

Namtox profile image
Namtox

Like wise.. a mind full of useless information

Painny profile image
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 😉😍

Namtox profile image
Namtox

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

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 profile image
Namtox in reply to

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

in reply to

Yes, I agree!!

Namtox profile image
Namtox

I like that

Namtox profile image
Namtox

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

Namtox profile image
Namtox

80’s

LoneEra profile image
LoneEra

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

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 profile image
Namtox in reply to

Eurythmics

in reply to Namtox

Good choice

Namtox profile image
Namtox

Wow. I love but have never seen that video

Namtox profile image
Namtox in reply to Namtox

*Muse

Now I can't play that video ☹

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 profile image
Namtox in reply to

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

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 profile image
Namtox in reply to

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 profile image
Namtox in reply to Namtox

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

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 profile image
Namtox in reply to

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

in reply to

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

in reply to

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

in reply to

Take care snuggle up warm and get some sleep,

Love and hugs Michele xx

in reply to

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

in reply to

Always here for you Lynne,

Get some rest and hopefully some relief 💐😊❤

Xxx

in reply to

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

in reply to

Go be a snuggle bunny 🐇get warm

Love Michele xxx

Namtox profile image
Namtox

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

Can't get it to play!!

Brilliant!!

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

I like this one, thanks Zoonie

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

It says video unavailable!!

Namtox profile image
Namtox in reply to

I think the DJ has left the building

Namtox profile image
Namtox

I don’t know.... who am I 😭😭😭😭

Brilliant,!!

I love this one!!

Now, that's more like it!!

Don't know, now!!

Namtox profile image
Namtox

Gwen stefani stopped producing far too young

Never seen her before but she's good!!

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

Good idea!!

LoneEra profile image
LoneEra

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

Badbessie profile image
Badbessie

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.

Hi

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

Painny profile image
Painny

.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 profile image
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 😂😂

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

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

bobbybobb profile image
bobbybobb

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

bobbybobb profile image
bobbybobb

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

Painny profile image
Painny

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

helen100768 profile image
helen100768

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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