Fibromyalgia/muscle pain

lillybee · Joined: 10 Nov 2007 Posts: 29 Location: Lancashire

you made it clear in enough in the previous post. Most people probably work harder etc than I have ever know, I probably have no life skills, can't talk face to face, I have a boring life etc etc. Enough of you have made it clear wheat you wish on me, and enough of you presume to know so much or so little of me and what I may or may not have knowledge of.
I have never said I am clever, better, more important than anyone. Some of the comments thrown back at me are very much pot calling the kettle. You are completely correct on one point. I will not be joining the fybromyalgia society and I will definitely not be reading all of the links kindly sent to me but thank you anyway. Can I just point out a few have commented I am sad, pathetic, boring, attention seeking, no lifer because I posted on here, well straight back at you

naughty boy · Joined: 03 Nov 2007 Posts: 168 Location: Chingford,London

Lets get a few things straight here. While I sympathize with the health issues on this thread.

Lillbee commented on films and movies on the entertainment thread.
And somersetgirl replied " quote Thats cos you have nothing else in your life!!!"

Lillybee replied that she had a life and somersetgirl replied Quote thats coz your not in pain.

I really do not think that lillybee started all this. I don't agree with what Lillybee said, but having said that, she did not start it.

lillybee · Joined: 10 Nov 2007 Posts: 29 Location: Lancashire

[quote="somersetgirl"]Now whos following who?
Yes thankfully my hands do work but what would you know?
You really are pathetic...go and create a dumb post and leave the health issues to people who know what they are talking about
Sounds like you enjoy feeling righteous...oh and sarcastic.Must be true of the old saying for you...
IGNORANCE IS BLISS
I only hope one day someone close to you does'nt get a life changing illness,poor things!
And as for wishing,we have our problems and never asked you to get involved in the 1st place SWEETIE[/quote]

speaking of sarcasm

you sent me two nasty private messages, you followed me in the food thread and the entertainment thread to post sarcastic comments and you posted a really funny joke about me in the joke thread.

I have no problem chatting in the forum, I don't send vicious PM's

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Big D · Moderator Joined: 24 Jan 2005 Posts: 179

[quote="lillybee"][quote="somersetgirl"]Now whos following who?
Yes thankfully my hands do work but what would you know?
You really are pathetic...go and create a dumb post and leave the health issues to people who know what they are talking about
Sounds like you enjoy feeling righteous...oh and sarcastic.Must be true of the old saying for you...
IGNORANCE IS BLISS
I only hope one day someone close to you does'nt get a life changing illness,poor things!
And as for wishing,we have our problems and never asked you to get involved in the 1st place SWEETIE[/quote]

speaking of sarcasm

you sent me two nasty private messages, you followed me in the food thread and the entertainment thread to post sarcastic comments and you posted a really funny joke about me in the joke thread.

I have no problem chatting in the forum, I don't send vicious PM's

[/img][/list][/list][/quote]

Forums are set up to elicit discussions and often these throw up opposing views which can result in a bit of what in sporting terms is known as 'handbags' but please try to keep the bricks out of the bags.

Big D

redwitch · Joined: 14 Feb 2008 Posts: 5

Big D I have read your response to the discussion regarding fibromyalgia and I am amazed that people are allowed to jump into discussions in which they clearly have no compassion or understanding, I am talking about lillybee who if you look has stareted off another topic on "any normal healthy people" and the discrimitory remarks made, which were obviously made to upset sick or disabled people, also the comment made about dizzy spells. If this is not discrimination what is? Everyone is entitled to their opinion I know that, but to deliberately attack people who she knows nothing about or their illnesses, because she is anonymous is pathetic and knew that she would get the response that she did, she is lucky enough to have her health and able to socialise but alot of people cannot do this and rely on caring understanding people to talk to who can empathise not have people attacking them. If this is what is allowed to happen on this site and the moderators do not remove the offender. I have no interest in returning to this site .There is no easy option of contacting moderator in events like this and therefore no alternative other than to post concerns which produced the results above.

Big D · Moderator Joined: 24 Jan 2005 Posts: 179

[quote="redwitch"]Big D I have read your response to the discussion regarding fibromyalgia and I am amazed that people are allowed to jump into discussions in which they clearly have no compassion or understanding, I am talking about lillybee who if you look has stareted off another topic on "any normal healthy people" and the discrimitory remarks made, which were obviously made to upset sick or disabled people, also the comment made about dizzy spells. If this is not discrimination what is? Everyone is entitled to their opinion I know that, but to deliberately attack people who she knows nothing about or their illnesses, because she is anonymous is pathetic and knew that she would get the response that she did, she is lucky enough to have her health and able to socialise but alot of people cannot do this and rely on caring understanding people to talk to who can empathise not have people attacking them. If this is what is allowed to happen on this site and the moderators do not remove the offender. I have no interest in returning to this site .There is no easy option of contacting moderator in events like this and therefore no alternative other than to post concerns which produced the results above.[/quote]

As you will appreciate it is the aim of all good forums to allow everybody a voice and to try to discriminate as little as possible. Having said that we are aware of the positive value the health forum has been able to engender amongst peer groups who have felt able to express themselves openly and without censure. I have tried nicely to warn the offender to moderate their language and can assure all that I will remove any posts that are deliberately offensive in future. I am minded to leave the current posts in order to show the strength of feeling amongst the more adult contributors to this unwarrented attack. What do you think?

Big D.

Lia · Joined: 14 Feb 2008 Posts: 3

Big D - I personally agree with leaving posts on !!
It will re-assure people who are trying to learn/understand about fm
and the problems faced
Also the fact there have been links and information sites posted it would be a shame to remove them for the geniune seekers of advice.
Theres always going to be the negative element on any forum but still feel it would be a shame to remove posts if it can help anyone else

Smile

lillybee · Joined: 10 Nov 2007 Posts: 29 Location: Lancashire

Feel free to delete anything considered offensive, most of the posts would go.

Perhaps the title of this section is misleading. "Health" should perhaps be read as this is for ill people to chat to ill people. I have a genuine interest in health, I read numerous items on maintaining a healthy lifestyle.

I find the view what goes around, comes around an interesting one. If that were the case why would anyone be ill in the first place. My best friend recently had a tumour removed and is undergoing chemotherapy, wonder what in her past brought that around.

Most of you accuse me of knowing nothin of FM, correct. My next door neighbour has FM. He gets a brand new care every 2-3 years, free, road tax, free, disabled parking, free, access to the swimming pool and gym, free. I paid to have cavity wall insullation last year, he got the same firm to come and do his, he got it free. He and his wife get allowances for care and he is always telling me I am a mug for going to work as he gets more than me for nothing. He has a nice life, working on his allotment, visiting garden centres, exhibitions, country pubs and shopping centres. He spends 6 weeks in Tenerife every winter. How does that happen?

desquinn · Joined: 14 Feb 2008 Posts: 4

[quote="lillybee"]Most of you accuse me of knowing nothin of FM, correct. My next door neighbour has FM. He gets a brand new care every 2-3 years, free, road tax, free, disabled parking, free, access to the swimming pool and gym, free. I paid to have cavity wall insullation last year, he got the same firm to come and do his, he got it free. He and his wife get allowances for care and he is always telling me I am a mug for going to work as he gets more than me for nothing. He has a nice life, working on his allotment, visiting garden centres, exhibitions, country pubs and shopping centres. He spends 6 weeks in Tenerife every winter. How does that happen?[/quote]

Maybe they are pretending to have FM...... There are people all over the country scamming benefits.... Some say a bad back, same say cancer. Some people have conned freinds and family out of money by saying they are terminally ill.

So do we tar everyone that has cancer with the same brush that you have tarrefd people with FM. Dont think so, I and many others suffer from FM and it is a real condition that I would happily be rid of it and be doing a lot more things than I can do now. This is not a case of suck it up and just live with it.... I wish it was that easy.

Your comment about renaming the board is strange.... someone started this thread asking for advice about their situation and you jumped in and called them a liar. Plain and simple. They wanted to talk about things afecting their health and the conditions a Doctor has diagnosed. I personally thing the board title is fine.

lillybee · Joined: 10 Nov 2007 Posts: 29 Location: Lancashire

Funny, a person asks for advice about a condition their doctor has diagnosed. My neighbour is pretending to have FM, it was diagnosed by his doctor, which one got it right

shanniebell · Joined: 15 Feb 2008 Posts: 9

[quote="lillybee"]Feel free to delete anything considered offensive, most of the posts would go.

Perhaps the title of this section is misleading. "Health" should perhaps be read as this is for ill people to chat to ill people. I have a genuine interest in health, I read numerous items on maintaining a healthy lifestyle.

I find the view what goes around, comes around an interesting one. If that were the case why would anyone be ill in the first place. My best friend recently had a tumour removed and is undergoing chemotherapy, wonder what in her past brought that around.

Most of you accuse me of knowing nothin of FM, correct. My next door neighbour has FM. He gets a brand new care every 2-3 years, free, road tax, free, disabled parking, free, access to the swimming pool and gym, free. I paid to have cavity wall insullation last year, he got the same firm to come and do his, he got it free. He and his wife get allowances for care and he is always telling me I am a mug for going to work as he gets more than me for nothing. He has a nice life, working on his allotment, visiting garden centres, exhibitions, country pubs and shopping centres. He spends 6 weeks in Tenerife every winter. How does that happen?[/quote]
the vast majority of people who exsist on benefits do not enjoy a decent quality of life, they struggle to make ends meet and have to very carefuly budget what little they do get. the vast majority of people on benefits cannot afford to spend 6 weeks on holiday in warm climates each year, most cannot afford to even take a weekend away. most are trying to figgure out how they will be able to put food on the table and keep their home warm.
if your neighbour is cheating the benefits system he will ultimately get caught and all the benefits that they have been given will be reclaimed, and if your neighbour has been fraudulently claiming to be ill when he's not he will end up with a criminal record once he's caught on.
I have fibromyalgia, i work to help support my family. I have a very difficult time walking because it hurts so badly it makes me nauseous. I hurt every second of every day, not because i want to be in pain, but because i was unlucky enough to develop fibromyalgia. i didn't ask to be sick, i do not want to be sick, and would gladly say goodbye to fibromyalgia to be healthy and well again.
don't place the genuinely ill people into the same category as those who cheat the benefits system, we have enough to deal with without having to deal with predjudice from people who don't understand what it's really like to actually live in pain 24/7
take care
shan

redwitch · Joined: 14 Feb 2008 Posts: 5

there are alot of benefit cheats out there! and it is annoying and frustrating to anyone who is honest whether they are healthy and able bodied or sick and disabled. But the truth of the matter is regardless of anyones own personal opinion is that there are sick and disabled who struggle to adapt to the changes in their lives and especially those that have worked hard since leaving school, and even when they have children they still go to work no matter what kind of work it is or the hours they have to do to make ends meet, and YES it is frustrating and can make you bitter when someone openly brags about what they can do while on benefits, while you have to work hard and struggle. I myself have always worked since leaving school and aswell as when children were born and growing up, Even to the point when I worked ten nights on and one night off, because of cover shortages, and me being unable to say no. Even after being told by pain specialist to stop working I carried on.
Most fibromyalgia sufferers do not only suffer with fibro there are alot of other conditions alongside.
All of my conditions have been proven by biopsies, x-rays blood tests etc. rheumatoid arthritis, multiple joints, lymph glands swollen inflamed. arthritis of the jaw and tmj, erythema nodosum, dry eyes/mouth(sjogrens)indications of glaucoma, light sensitivity, and sun allergy. allergy to most important meds needed for alot of these conditions - anti inflammatories. finally to be told I have fibro myalgia aswell was the final straw , so there is no way that I could tolerate any one no matter what reason. calling ALL sick or disabled malingerers, Of course there genuine people who are sick and unable to work but many carry on until it becomes impossible, so do not judge by what examples you witness and tar every one with the same brush.
I also have a young niece who has just started her career as a teacher and bought her own house and was found to have breast cancer and has undergone chemo and radiotherapy and has lost all her hair, but she has gone back to work even if she can only do short hours and has to have regular breaks, but that is the way we have been brought up. to fight on as long as we can.
what goes around comes around means that if you treat or do some injustice to anyone you not have any luck and the way you have acted doing any of these could come back to you not necessarily in the same way, And although people can be insensitive to other people when they dont know them or the facts, I would never wish any ill health on anyone. Also I do not judge on appearances or hearsay,so if anyone is swinging the lead they will get found out, what goes around comes around So if you still want to attack feel free. I have said all I am going to say for the moment!

lillybee · Joined: 10 Nov 2007 Posts: 29 Location: Lancashire

I apologise for my behaviour, for the offense I have caused and the hurt I have inflicted, albeit unwittingly. I fully accept it is unfair and unjust to tar everyone with the same brush. I acted out of frustration and in a manner I would not normally pursue and would myself find unaccepatable on other occasions.I am sorry, and I hope I have not pushed anyone out of what is a useful and informative forum. I will say, some of you have in return done nothing to promote your cause, the originator of the thread in particular has proved far more malicious than I, particularly in private messages. There are negative and offensive people across the board. I apologise again for my part and will leave you in peace to enjoy your health issues.

redwitch · Joined: 14 Feb 2008 Posts: 5

thank you for your apology and for being big enough to do that, we all understand the frustrations and are always like everyone else liable to fly off the handle and say things, but it IS annoying when people make hurtful remarks when you have always been hardworking and would still love to be "normal", but let it go now. thank you.

Soopie · Joined: 14 Feb 2008 Posts: 3

[quote="lillybee"]I apologise for my behaviour, for the offense I have caused and the hurt I have inflicted, albeit unwittingly. I fully accept it is unfair and unjust to tar everyone with the same brush. I acted out of frustration and in a manner I would not normally pursue and would myself find unaccepatable on other occasions.I am sorry, and I hope I have not pushed anyone out of what is a useful and informative forum. I will say, some of you have in return done nothing to promote your cause, the originator of the thread in particular has proved far more malicious than I, particularly in private messages. There are negative and offensive people across the board. I apologise again for my part and will leave you in peace to enjoy your health issues.[/quote]

Thank you Lillybee, apology accepted... We weren't angry at you the person as we do not know you... It was your attack on the condition of Fibromyalgia. Hope you now understand this condition is Real. Hope your neighbour is not using this illness to abuse the benefit system either.. Thank you for your post, it was very courageous of you..

Soopie (undisgusted Very Happy

)

somersetgirl · Joined: 22 Jan 2008 Posts: 15

[quote="lillybee"]I apologise for my behaviour, for the offense I have caused and the hurt I have inflicted, albeit unwittingly. I fully accept it is unfair and unjust to tar everyone with the same brush. I acted out of frustration and in a manner I would not normally pursue and would myself find unaccepatable on other occasions.I am sorry, and I hope I have not pushed anyone out of what is a useful and informative forum. I will say, some of you have in return done nothing to promote your cause, the originator of the thread in particular has proved far more malicious than I, particularly in private messages. There are negative and offensive people across the board. I apologise again for my part and will leave you in peace to enjoy your health issues.[/quote]

I was not malicious in pm's, just told you that you were sad and ignorant,and to be fair,my health and life are in a dark place at the moment so i reacted to your horrid reply.You should'nt have attacked my health question (or come to that the person asking about dizzy spells either) I attacked back at you because i could not believe how unfair and nasty you were being and your ignorant posts really annoyed me. Plus,was there any need to swear in you're posts on a forum that may have young people reading it?!
I understand you have had a warning from the moderator. You are right,i don't know you and to be honest i would not want to!
Maybe now you have heard some stories you will accept the hurt you caused ,especially to myself aswell as other fm sufferers!! I am nothing like you're neighbour and can't lead a 'normal' life as you can,but i am no mallingerer or scrounger either and would like to turn the clock back on my health.
You are now apologising as you realise you made a wrong call...hopefully you'll understand why people including myself 'attacked' you in return.
Try living a day in our shoes and then reading an ignorant post slating you're illness/question! You have admitted to being unjust so lets leave it at that...you still have not apologised to me,and it was me who 1st put up the post.
Enjoy your life lillybee,because you can!

bonobo · Joined: 14 Feb 2008 Posts: 2

Thank you Lillybee for your apology. Having heared about your neighbour I can quite understand your frustration as it does sound as though he is abusing the system, it is possible he does have FM but possibly not to the extent to which he claims. Many people with FM are mobile and hold down demanding jobs with the aid of medication. However there are others who are genuinly house bound, being unable to walk more than a very short distance without help.
It is an illness which affects people differently so it is difficult to say to what extent your neighbour is swinging the lead. I know of people who would love to go to Tenerife every year even for the odd week but are unable to endure the flight or, in some cases, the drive to the airport.
I am luck enough to be able to stay at home as my husband works but I still have my children to look after, the youngest being 5. I worry constantly about collapsing when he is alone with me; I was once almost completely paralised for a couple of hours. I cry because some days I can't give him a cuddle to let him know I love him; there are days when everything hurts even my skin; and I worry that my condition will get worse meaning my husband would have to give up work to look after me. I have no wish to be a burden and I would be looking for a job but I know that I would be unreliable at best.
Please don't think we are all just out to con the system out of money, I don't claim any benefits for myself and am trying my hardest to earn a bit of money as a writer, my brain being the only part that works Very Happy

and that's only on a good day. On a bad day I have trouble remembering the names of people I have known all my life!
Thank you again for your apology, it means a lot and I commend you for your bravery in coming on here and writing it when it would have been so much easier to just let it go. xxxx

fibrofighter · Joined: 14 Feb 2008 Posts: 4

For years and years
I was in pain
Before a doctor
Referred me
On, oh
My, oh my, what joy I felt, I know that
You will all
Agree, at
Last I found my pain to be
Genuine, not in my head
I'm not insane, oh what a thrill
All of this time, I was really ill

Copyright c 2007 Maureen J Fagg

If you read the first letter of each line you will notice it is an acrostic spelling out the word 'FIBROMYALGIA'[/b]

xxycm · Joined: 27 Apr 2008 Posts: 2 Location: U.S.A.

Hello everyone I had to join when I saw what lilybee or who ever she is with her teeny tiny mind. If ms.lbee does not have FM why are you on this thread, its true you must have no life. And the only way you will understand is if you come down with it---heaven for bid and I will not feel a thing for you

I live in the U.S.A. and I have FM, I didn't think it was real until I developed it. But never did I call someone a lier or lazy when they said they did have and all were met at my job! We work the best we can if we can work and believe me it is very hard!!!!
And I have never been on welfare for it and millions of other have not either. Many times I all most gave up completely on every being able to my job every day, until my job changed their absent days policy, normally you would have to have a doctor slip and now they will not except one so I filed for Family Leave Act that we have here. It is to cover you when taking care of an ill family member but will cover Chronic Illness also. So when I can hardly move and am in extreme pain I don't have to spend $70.00 for a Dr. slip, and I know I will not get into trouble for not coming to work. Thank God I can retire in July!!!

so this is for Ms. lilybee-------BUZZZZZZZZZZZZ OFF Twisted Evil

wwx.fmchronicles.blogspot.con

carol100 · Joined: 03 Aug 2008 Posts: 1

Hi,

Please can someone help.

I am new to forums I have been diagnosed with Fibromyalgia and the DLA doctor came to my home yesterday to assess me. As it was on one my bad days I was not examined he just asked me to walk across a room (approx 6ft X 7ft) and up one step of the stairs at my home. I was asked a series of questions and then he left. Does anyone know when the decision will be made and I will know about it. Also as read in other forums this claim is refused many times and if it should happen me how would I go about appealing to this decision.

Many Thanks

Carol