Most ridiculous thing you've heard about Fibro...

All your fibromyalgia experiences, questions and answers.

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Re: Most ridiculous thing you've heard about Fibro...

Postby Gizmo01 » Fri Aug 22, 2014 10:18 pm

I've been told by my specialist & a few docs that if I exercise that it would all go away! :roll: it made me angry that they said it in front of my hubby and now he thinks the same lol great so when I'm in agony he suggests that I should go to the gym wtf! :nono:
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Re: Most ridiculous thing you've heard about Fibro...

Postby Butterfly8588 » Fri Aug 22, 2014 11:04 pm

Not sure its completely relevant but I can't stand it when you tell someone you have fibro (although admittedly I dont tell many) and they say 'oh yeah, I've HAD that!' It drives me mad!
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Re: Most ridiculous thing you've heard about Fibro...

Postby rich44 » Sat Aug 23, 2014 12:58 am

You know what really really really makes me angry?

When medical professionals go on about graded exercise therapy & pacing as the holy grail to fix us up.

Hell no, I've been ill a decade and I've tried doing that and it just made things worse.
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Re: Most ridiculous thing you've heard about Fibro...

Postby Butterfly8588 » Sat Aug 23, 2014 3:32 am

I agree rich. I went on a pain management course once and I remember them talking about pacing yourself doing the washing up, apparently we're meant to wash up a couple of things and then sit down for a bit, then wash up a couple of things and sit down again etc! Surely I'm not the only one who sees that doing it that way would make the water cold? and to be honest would frustrate the hell out of me and cause me additional pain! Not practical at all. Full of little 'gems' that course was!
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Re: Most ridiculous thing you've heard about Fibro...

Postby SchroedingersCat » Sat Aug 23, 2014 8:42 am

Wow.....never had any of these things said to me. Astonishin.
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Re: Most ridiculous thing you've heard about Fibro...

Postby MPSGuy » Sat Aug 23, 2014 11:58 am

I think some of the things doctors and people say are because they take good ideas to the extreme and over simplify because they don't understand.

Everybody knows that gentle exercise and relaxation can HELP chronic pain (help, not cure), but they misinterpret the idea and give simplistic and offensive suggestions like "just go for a daily walk and you will be cured" or "do some meditation and you will be fine", etc. It just isn't that easy.

Fibromyaglia (along with many other chronic illnesses / pain conditions) is associated with depression and anxiety. So that gets interpreted as fibro is "all in your head", "you are crazy" and so on. They are the crazy ones because they can't understand association does not mean causation.

Some of the things are harsh but true though.... you do have to just learn to live with it and make the most of a bad situation. You do have to recognise that stress and anxiety make things worse and consider treating those with relaxation, therapy or in severe cases drugs.
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Re: Most ridiculous thing you've heard about Fibro...

Postby FluppyPuffy » Sat Aug 23, 2014 1:36 pm

Unfortunately all thru life, whether illness is in the mix or not, there will be those who come out with such inane, glib comments. Were we in a better position, they would be easier to shrug off or laugh at, but with how FM stirs things up, it leaves a good number of us with with a lot of our sensitiveness either very near, or right at the surface of ourselves. Add that to the bleakness that encircles us at times and it creates the perfect environment for for the inaneness and glibness to really hit us at our weakest point, and to do so at such a speed that it has got in, done its damage and can now sit back and watch as we try and find a way to counter it, regardless of the way in which such a comment may be meant.
Butterfly8588 wrote:I went on a pain management course once and I remember them talking about pacing yourself doing the washing up, apparently we're meant to wash up a couple of things and then sit down for a bit, then wash up a couple of things and sit down again etc! Surely I'm not the only one who sees that doing it that way would make the water cold? and to be honest would frustrate the hell out of me and cause me additional pain! Not practical at all. Full of little 'gems' that course was!

Maybe I've been fortunate with the people I've seen and who have run sessions and courses I've attended, as the emphasis was always on determining a personal baseline for pacing, exercise etc and then using the tools that the course aims to give people to work on, and hopefully increase over a suitable period of time for them. No specific numbers, amounts, periods of time, simply what each individual is able to manage. If people were to stop and think, even for just a second or two, not only about what they are going to say, but also about HOW they say it, things could, in fact would, come across so much more differently, and possibly cause a lot less stress and upset.

Whilst most of us deep down know that there may be an elephant of truth in some of what is being said, the times that such comments seem to appear are when someone may be feeling particularly low, or irritated, or spikey, and these are the last sort of comments that they are wanting to hear.

Over the years I've heard very similar comments to what have been mentioned, and at first I would be upset and affected by them. With time tho, knowing my personal situation {which quite often others think they do too, but in reality they know very little} and being aware of the sort of things that can be trotted out, these kinds of comments do become possible to handle. My personal favourite for when someone starts gibbering on like an Armchair Professor is to just give them a withering stare, ideally over the top of my glasses, and watch their expression change ;-) ;-) ;-) Or, if they continue blathering on, repeating parts of what they say, with a few added Blah Blah Blahs, and a glib comment of my own, such as the good old "Been there, done that, bought the t~shirt, washed the car with it, and put it in the bin" tends to cut them off in their prime :mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen: :mrgreen:
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Re: Most ridiculous thing you've heard about Fibro...

Postby Sari mitchell » Sat Aug 23, 2014 9:30 pm

Thank you for allowing me to reply. The most ridiculous thing I have ever heard was "You are faking it" For 16 years I'm faking this horrible illness. PLEASE. LOL
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Re: Most ridiculous thing you've heard about Fibro...

Postby Tally1068 » Sun Aug 24, 2014 1:23 am

:-) Just wanted to thank you for your post fluppypuffy.

Mainly the bit about how we're hypersensitive when we're having a bad day. Reading it resonated with me and has put me into a much calmer mode. I was getting angry at other's experiences and while I think I've been lucky since my diagnosis 18 months ago I will never forget the preceding 4 years when a) I felt I was being labelled a hypochondriac, and b) when I asked what was wrong with me, they said "don't know".

Whoever said ignorance is bliss was right, Except when it refers to something that affects all our lives so much. I try and be as positive as I can but with flare ups in arthritis and my eyesight (I have glaucoma which is still in the stages of trying out different drops) and fibro, days like this are hard.
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Re: Most ridiculous thing you've heard about Fibro...

Postby Zia2014 » Sun Aug 24, 2014 2:29 pm

Thanks everyone, interesting to see a common theme emerging...

Btw I don't know how to do multiple quotes, sorry!

Susan Stokes wrote:Great topic to start the weekend. My doctor advised me to eat chocolate for my restless legs - Brilliant I thought, can I get it on prescription? - NO. Seriously though, it is frustrating when people have such reactions especially the medical profession. We have to laugh or we wouldn't survive.


I so wish that was true!!!! :lol:
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Re: Most ridiculous thing you've heard about Fibro...

Postby Zia2014 » Sun Aug 24, 2014 2:30 pm

Gizmo01 wrote:I've been told by my specialist & a few docs that if I exercise that it would all go away! :roll: it made me angry that they said it in front of my hubby and now he thinks the same lol great so when I'm in agony he suggests that I should go to the gym wtf! :nono:


Wow really?! I'd give him a kicking in *that* area and then see how he feels!
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Re: Most ridiculous thing you've heard about Fibro...

Postby Zia2014 » Sun Aug 24, 2014 2:32 pm

Butterfly8588 wrote:Not sure its completely relevant but I can't stand it when you tell someone you have fibro (although admittedly I dont tell many) and they say 'oh yeah, I've HAD that!' It drives me mad!


That is SO relevant and I'll tell you why...my mum is one of those people who when you say you have a cough she says she's had one for twice as long, you know the sort. When I mentioned Fibro as diagnosis she told me about the time 35 years ago when she had mysterious symptoms for a whole two months... :roll: :roll: :roll: I was doing a lot of eye rolling and biting of tongue, 2 months really doesn't compare!!!
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Re: Most ridiculous thing you've heard about Fibro...

Postby Zia2014 » Sun Aug 24, 2014 2:34 pm

MPSGuy wrote:I think some of the things doctors and people say are because they take good ideas to the extreme and over simplify because they don't understand.

Everybody knows that gentle exercise and relaxation can HELP chronic pain (help, not cure), but they misinterpret the idea and give simplistic and offensive suggestions like "just go for a daily walk and you will be cured" or "do some meditation and you will be fine", etc. It just isn't that easy.

Fibromyaglia (along with many other chronic illnesses / pain conditions) is associated with depression and anxiety. So that gets interpreted as fibro is "all in your head", "you are crazy" and so on. They are the crazy ones because they can't understand association does not mean causation.

Some of the things are harsh but true though.... you do have to just learn to live with it and make the most of a bad situation. You do have to recognise that stress and anxiety make things worse and consider treating those with relaxation, therapy or in severe cases drugs.


So true - my dr (who is otherwise pretty good in that he believes in Fibro) told me to try and do exercise. And, err, that was it!

Butterfly - I do washing up in stages, always have done as our sink is a bit too far back and it hurts my back/neck. So I do about 10 minutes, turn off the water, let everything dry, then go back and do a bit more.
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Re: Most ridiculous thing you've heard about Fibro...

Postby Zia2014 » Sun Aug 24, 2014 2:36 pm

I HATE that so many people have been told it's in their heads, or a bit of walking will fix it. Hugs to everyone.

FluppyPuffy wrote:Unfortunately all thru life, whether illness is in the mix or not, there will be those who come out with such inane, glib comments. Were we in a better position, they would be easier to shrug off or laugh at, but with how FM stirs things up, it leaves a good number of us with with a lot of our sensitiveness either very near, or right at the surface of ourselves. Add that to the bleakness that encircles us at times and it creates the perfect environment for for the inaneness and glibness to really hit us at our weakest point, and to do so at such a speed that it has got in, done its damage and can now sit back and watch as we try and find a way to counter it, regardless of the way in which such a comment may be meant.

If people were to stop and think, even for just a second or two, not only about what they are going to say, but also about HOW they say it, things could, in fact would, come across so much more differently, and possibly cause a lot less stress and upset.

Whilst most of us deep down know that there may be an elephant of truth in some of what is being said, the times that such comments seem to appear are when someone may be feeling particularly low, or irritated, or spikey, and these are the last sort of comments that they are wanting to hear.

Over the years I've heard very similar comments to what have been mentioned, and at first I would be upset and affected by them. With time tho, knowing my personal situation {which quite often others think they do too, but in reality they know very little} and being aware of the sort of things that can be trotted out, these kinds of comments do become possible to handle.


You are most wise and this is a great post. I think I will refer back to this quote whenever I am having a bad day.

Hope you had a good holiday btw!
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Re: Most ridiculous thing you've heard about Fibro...

Postby mimildred » Wed Aug 27, 2014 6:46 pm

I have been recently diagnosed with FMS. My Consultant Rheumatologist told me that if I get the pain under control, I can do lots of exercise and get my strength back. My GP has told me if I sleep properly I will be OK. Having read these posts, I am starting to get the impression that these are both a load of rubbish? Could I have some honest answers / opinions please? Do I continue to live in hope of recovering, or should I start getting used to life like this?!
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