why do people think saying that will ... - Fibromyalgia Acti...

Fibromyalgia Action UK

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why do people think saying that will help ???

wevskysgirl profile image
13 Replies

hope everyones having a good day today , I need to rant vent and scream ... not had a lot of sleep as pain levels keep creeping up and to top that off ive been having the oddest most disturbing dreams ...I think whats really wound me up is just as I was drifting of to sleep this morning , the neighbours grandkid was in there garden moaning very loudly as only a toddler can do that they wanted this and that and everything, so any hope of sleep was out the question after that .... and then to really add to my feelings of love for my fellow human beings a friend of my hubbys msgd me and said

'' i had fibromalagia for 3 years drove me potty trying to work full time sometimes i just wanted to give up but suddenly after losing some weight the symptoms subsided ''

there was a bit more but arghhhhhhhhhhhh I hate it when people say things like that, ive had it 17 blooming yrs and skinny or fat ive suffered the same pain the whole time with it getting worse not better ...so while im pleased for the lass ..and I truly am all I want to do is scream ... the bit where she said she could go to the gym now as well really peed me off if I could jump up and down while screaming theres a good chance I would have ....grrrr

thanks for listening to me rant guys I feel better now xx

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wevskysgirl profile image
wevskysgirl
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13 Replies
Ginsing profile image
Ginsing

Morning as I read your "rant" I could hear you winding down like a clock work doll! I am so pleased you managed to get your anger out and that you are feeling better now!

If he had Fibro for three years I am surprised it is likely it was something else and the pressure from the weight he was carrying was the catalyst. AS you say is only it were true of Fibromites it would be so much easier to deal with it.

Hope you have a good day keep smiling through xgins

ladytelita profile image
ladytelita

It can't have been fibro. It certainly doesn't abate because of weight loss! What a ridiculous person. I know a number of people with fibro and/or ME and they are all different (age, height, weight). The only usual common factors are their previously hard working/active lifestyles and their sheer determination to carry on despite pain levels and the attitudes of those that haven't a clue about fibro.

I'm gonna stop cos I can feel a rant moment rising now!

P.

irishlady76 profile image
irishlady76 in reply toladytelita

i had someone say to me when i said i had fybro " oh yes thats that imaginary illness that people use to skive off of work" well believe me i told her exactly what i thought of her and have never spoken to her again except to give her an explanation of fibromyalgia that i printed off and then weeks later she apologised to me gr...... makes you mad doesnt it xxx

pip_r profile image
pip_r

She probably felt better in herself because she lost weight, as most people would. I've stopped eating wheat and no longer feel as unwell as I did because I don't have the severe pain and diarrhoea that plagued me. However, my fibro hasn't changed one bit and is still debilitating.

If she had fibro you can only assume it was not a severe case. There are some people who can continue to work with fibro, but not if they had the full-blown, hugely debilitating fibro many of us on here have - it wouldn't be possible! Many of us have had to leave jobs we love due to fibro. She should recognise when someone's fibro is much more severe and rephrase her comments!

I've had people say "if you stop eating this food", "if you just go for a walk", "if you lose weight" and then apparently my fibro will miraculously disappear. It would be an amazing, easy way to recover if it wasn't a load of #!*$..!

Argh..! It's annoying, but don't let it get to you if poss. Hopefully you feel better for venting :)

Pip xx

wevskysgirl profile image
wevskysgirl

thanks for the replys guys .... im normaly ok with people trying to be 'helpful' but after nearly 6 weeks of school holidays and the ex husband being a plank ..plus having 3 teeth pulled out and needing stitchs on my gum as one tooth didn't want to leave me im feeling a tad antsy and grumpy ... none of my meds want to work and the nefopan keeps making me throw up ( what fun that is ) so im limiting my intake on them ...all in all I think im turning into a grumpy pants , still it could be worse ....im not sure how but it could be lol , still as long as I can rant and try and see the funny side of life ....

hope your all having a good day and the pains not to bad xx

SnagglePuss profile image
SnagglePuss in reply towevskysgirl

"THREE TEETH PULLED OUT" *cringe, shudder, hides under bed* (I am SUCH a coward about all things dental) Jeez, that alone would be plenty & more to deal with, without stupid know-it-all pr*ts saying stupid know-nothing unhelpful 'advice'. Make a plasticine doll of the pr*t and stick pins in it.

Fibrofoggiest profile image
Fibrofoggiest

Coooo golly wow, I think I'd be feeling more than a tad antsy and grumpy with all that and then a condescending text from someone who may have had fibro and may have gone into remission after her weight loss, I think I would have blown a fuse ! Just wait until the said lass, if what she had was fibro, comes out of remission and it hits her full on again....... then you can sit back and know you are far more clued up and realistic about the situation than she is !!! Sending anti-antsy and good vibes your way!

Foggy x

jillylin profile image
jillylin

I hear you and I'd be mad too. I know people think they are being helpful but sometimes they just make us want to chew nails and spit rust! I am wondering if that person ever had Fibro to begin with. My Consultant very firmly told me that though it ebbs and flows, it's permanent. Yes, exercise can make it better but it's no cure. If it was, as a ballet dancer, I wouldn't have it.

Ouch to the teeth extractions. hope your feel better soon.

Hugs

Jillyxx

Tattyhead53 profile image
Tattyhead53

Trouble is people are all different and when someone goes into remission because of something they have done that worked for them they either want to share it or brag about it. My sister did the same to my husband, banging on about this young policeman who lost a leg due to an accident and was climbing Everest, running Marathons etc as my husband said, and I quote.....' I never wanted to do those things before I became an amputee, why the f**** would I want to do them now!' That phrase Always makes me laugh and puts things into perspective for me!

Massagegnome profile image
Massagegnome

I agree if they truly have fibro losing weight won't make a difference. I have had mine fat and skinny. Sleep or no sleep. Good diet, bad diet.

sue32 profile image
sue32

I have to say when I lost some weight my symptoms got worse!!! It was as if the fat was masking the pains etc. And I've just read an article sent by a 'friend' that stated aspartame can be the cause of MS and fibro!!! Apparently people who had such symptoms drank a lot of diet sodas, stopped drinking them and were miraculously cured!!!!! If only!!!! :-o

yenool profile image
yenool

Oh yes the internet is full of those types of people too - they were lucky enough to find remission from their fibro (or whatever illness they had/have) and they link their recovery to whatever crackpot diet plan, supplement, herbs, exercise plan, meditation, book they just read or whatever.........and spend the entire time preaching to everyone else that they can be 'cured' if they would just 'do what I did'...............as if we are too stupid to try and help ourselves by living healthy.

Weight loss and exercise is the most common one and I'm sure some people who have been diagnosed with fibro are just tired and out of shape, but many are not and losing weight isn't the answer for everyone.

lemonzilla profile image
lemonzilla

I regularly get that 'pep' talk from my GP's... "Your symptoms will ease off once you start taking some exercise and manage to lose weight. So I did what I was advised... diet: gym (and yes, it almost killed me every time) ... bought a bike and cycled everywhere.

Now I'm 4-5 stones lighter, still permanently exhausted, in constant and unrelenting pain in some body part or other, and still being told by the same GP's that I'm not doing enough....

I am given painkillers for the various pins.. amytriptilene for the sleep problems and as a muscle relaxant, and that's the support I have or my fibro... because it isn't as rare or interesting as the other condition I suffer from, it gets minimized and ignored

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