One to show the non believer's

All your fibromyalgia experiences, questions and answers.

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Re: One to show the non believer's

Postby jl1066 » Sat Jul 26, 2014 12:05 am

Wow could of written most of it myself, it's so true to how we feel as individuals having to live with this condition. Someone asked me earlier today to explain 'exactly what is fibromyalgia' and as I tried to tell her you could see on her face that she thought I was making it up. I think printing out copies and handing them out would save us all precious energy on having to go through it all every time we meet someone who, and I should point out, thankfully for them......, don't understand the isolating and often mentally torturing symptoms of FMS.
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Re: One to show the non believer's

Postby rubes » Fri Aug 01, 2014 7:58 pm

Brilliant, just about sums me up!
Thankyou.
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Re: One to show the non believer's

Postby Lindenp » Mon Aug 04, 2014 10:16 am

I soooo needed this this morning when I phoned the district nurses to come in and change my dressings after an op last week. She said that they normally expect people to come in to the surgery to get the nurses to do this. I tried to explain that I have Fibro and that I simply am unable to get into the surgery just now but it felt like it was falling on deaf ears. She eventually agreed to send someone tomorrow but said that after that I would be expected to go to the surgery. Grrrr :scream-1:

People used to tell me that I needed to learn to ask for help when I need it but now when I ask this is the sort of response I get. I am going to print this out for tomorrow and give it the nurse when she comes. So a huge thanks for putting this up here. Very much appreciated. :welldone:

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Re: One to show the non believer's

Postby *Lisa* » Mon Aug 04, 2014 11:41 am

Hi Linden,

Thats a good idea. I shall also think about doing this before i have my op in a few weeks.

Mind you I normally tell people that i suffer from chronic pain rather then Fibromyalgia as i found for me its easier :crazy:

I have my pre-assess next week so may take some info with me.

Hope all goes ok with the nurse
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: One to show the non believer's

Postby oliviajane » Sun Aug 10, 2014 2:48 pm

THANK YOU SHAZQ
I have just spent the last hour crying. Had a row with my husband as he said ,theres always something wrong with you !
Im not having a goodtime at present as the pain in my head is getting me down also the pins needles in my hands. I have sores on roof my mouth and my tongue is thick white. Ive nursed him through his illness for 15yrs and never complained but now im in need of some understanding and your letter I hope is going to get me some. I have printed it and am just about to give to him. Maybe now he will see that yes there is something wrong with me. I would love to share it on my facebook page also.
Wishing you a lot more good days than bad
thanks again .x
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Re: One to show the non believer's

Postby denys » Sun Aug 10, 2014 8:50 pm

Shaz doesnt mind people sharing it as long as they acknowledge that she wrote it and where you saw it :-D :-D :-D Hope your head eases, have you been to the docs about your mouth :?: :?: :?: :?: it really sounds as though you could do with a trip to see them. :fingerscrossed: :fingerscrossed: your husband starts to understand
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Re: One to show the non believer's

Postby Marika W. » Fri Aug 29, 2014 12:22 pm

Thank you for all your know how.
I will definitely use it on my next appointment.
The doctor that saw me yesterday thinks I am :crazy:
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Re: One to show the non believer's

Postby Se3ma » Fri Sep 12, 2014 4:03 am

I know this post had been put up some time ago but I just wanted to comment and say you have summed up everything so well and this should be put in a leaflet of some sort which relates to fibromyalgia so family and friends can read it to get a better understanding. Part of the problem with having fms is that it's invisible to most people especially if you're not complaining or moaning about your symptoms. No one really knows and when you do say you're in a lot of pain 'today' they look at you like where was the pain yesterday don't don't think for once that yesterday was a good day, or you slept better the day before and therefore the pain was manageable and you were being stronger because you were able to as that little bit of sleep helped.

I find it frustrating when people look at me and say you look well. It's because I've slapped on some makeup to hide the bags under my eyes and because I'm wearing this smile just so I don't have to answer a million and one questions.

I wish I could show this message to every person who has something to say with regards to how they think I feel, how they think I look and how they think they can 'understand the pain that I'm going through'.

So yes, sorry about the rant ... And I agree with everyone that this post was great. Thank you for sharing xx
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Re: One to show the non believer's

Postby madchickenlady » Sat Sep 27, 2014 10:08 pm

Just read the description of Fibro and think its brilliant, I am so fed up of trying to explain it to people, I now just say I have Fibromyalgia and if you want to know what it is look it up online because my brain can't cope with trying to explain it. one of my bosses has a bad knee and she likens my pain to her knee problem, she says " oh your just like me with my achey knee" I wish it was just my knee that would be a relief, my bosses can't understand why I can't be fixed, they keep telling me to go to my gp to get it sorted out, I have explained to them over and over again that its not curable and treatments are variable in effect, they think I can just take a pill and it will magically go away despite me telling them that my gp has told me I have to accept that I am not going to get better and that we can only manage the symptoms, the worst thing about this is a work in a hospital :shock: people either don't know what it is or don't realise the extent of the problem, my colleagues are really good apart from a couple who think I just have a bad back, again that would be a relief,bad backs can mostly be cured but not this
I am currently signed off work because I am finding it hard to cope with my job and the pain, I went to work three weeks ago feeling terrible and one of my colleagues asked me if I was ok and I just broke down and cried,she went and spoke to the matron in charge that day and he sent me home ( this particular matron has been brilliant) I managed to get a gp appointment the next day and he signed me off for two weeks initially I saw another gp when that ran out and extended it for another two weeks,this runs out on the 5th of October and I am not sure I will be ready to go back, its such a nasty illness and I'm fed up with people saying " but you look so well" i don't actually if you bother to really look and see me
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Re: One to show the non believer's

Postby kitchenwitch76 » Thu Oct 30, 2014 12:56 pm

This is brilliant, well done, I might have to put a copy in my kitchen for my daughter and bf to read. Maybe then they'll be able to understand how I feel.
Much love,light and healing :-D
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Re: One to show the non believer's

Postby Cathy59 » Fri Nov 21, 2014 1:51 pm

:-D THANKYOU, THANKYOU, THANKYOU

I have been suffering with a multitude of symptoms for years and been treated for them on their own. I've been called lazy, forgetful etc
A few months ago I was finally diagnosed with fibro and it is all starting to make sense. Your post says it all for me, so THANKYOU.
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Re: One to show the non believer's

Postby Cathy59 » Fri Nov 21, 2014 3:30 pm

Can you please repost this on facebook so I can share with family and friends
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Re: One to show the non believer's

Postby PMKing » Sun Nov 23, 2014 5:24 pm

Might I suggest Admin put this out on their various links. It sums up sufferers problems really well. Thanks
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Re: One to show the non believer's

Postby FluppyPuffy » Mon Nov 24, 2014 3:49 pm

Cathy59 wrote:Can you please repost this on facebook so I can share with family and friends

Cathy, you're more than welcome to copy it and post on your own FB timeliney~walley thing. All that we ask is that you include a little acknowledgement as to where it has come from and who it is written by. This was the only thing Shaz would ask of anyone who wanted to share/post it elsewhere as there have been times when others have tried to pass it off as their writing.

PMKing wrote:Might I suggest Admin put this out on their various links. It sums up sufferers problems really well. Thanks

What/which linkys are you referring to PMKing?? It is a "stickied" topic so is easy to see when someone enters the board, and will not drop down the board as non~stickied topics tend to.

You are more than welcome to share it with others who you think may benefit from reading it, all that is asked is that an acknowledgement of where it has come from and who originally wrote it is included so that it can't be passed off by someone else as their work.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: One to show the non believer's

Postby Queenie_70 » Mon Jan 05, 2015 6:55 pm

I wish this was a handout I could have given to at least a dozen family members. Until my father actually witnessed an "episode" he kept thinking I would, "get better." :roll:

So many of us could use this, or put it in a GP surgery for others to see, because, it does describe us. One or more, or even all of the elements pertain to an FM sufferer. :cry: :crazy:

Those that have heard the term Fibromyalgia, are also quick to think it is just a few sleepless nights, or some pain now and then.....boy have I heard that often enough. :!:

Thank you for putting it so eloquently for us all. :elephant:
"Life is not measured by the breaths we take, but by the moments that take our breath away."
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