I have fibro and other illness and i am wondering about some questions posted and asked it seems to me that some people are looking for fibro as an answer to staying at home i have become very wary now after asking some questions to a newbe who even though put same area of living as me i asked how near and answer was i am unwilling to say as i don't know how safe this site is???? yet this person was willing to ask personal questions regarding symptoms and could they get dla or esa and wanted to know how to get diagnosed? and if fibro showed in blood tests ect? has anyone else thought this or am i finally insane? lost the plot or just foggy with fibro but i have become very suspicious ?Sorry to every genuine person on here x
Faker or real?: I have fibro and other... - Fibromyalgia Acti...
Faker or real?
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jolow
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Hello Jolow. To be honest with you our only concern is that we help and support anyone here at FibroAction who needs these things. We, as Admin and Volunteers aren't here to stand in judgement of anyone or ponder over whether what people post is true. All I can say is that we care beyond that, we don't analyse to that extent. We are here in a supporting, hopefully helpful capacity and above all, we all have Fibro so we understand exactly how our members are feeling, we feel their pain, exhaustion and frustrations etc too.
What we all have to bear in mind here is that people get desperate, some are in dire need of pointing in the right direction, they pour their hearts out. We all slowly get to know each other better so it gets easier as time goes on. People tend to say more when they feel more at ease here.
It is entirely up to each individual as to how much they post about their situation, some reveal more, some don't reveal much at all, that is their prerogative.
I hope this all makes sense, we are here to help simply. I hope on most occasions we achieve that as we always try our absolute best at all times. 
in reply to
Also the anonymity that sites such as this gives helps people to be open about their situations etc without the fear of being judged and ridiculed,everyone needs an outlet of somesort for whatever reasons, i thank all of the wonderful people such as yourself for being shoulders to cry upon and friends indeed at times of need xxx
in reply to
Thank you Della, it is my and our pleasure! (((hug))) xxx
sue57 in reply to
Here here!! I have met some wonderful people on here, and I am so relieved and reassured by the many symptoms reported here. I was sure I was the only one and yet, we're all over the place!! Thank you soooo much!! XX
Hello sue, if you re read post i was not saying that i have not met nice people on here as i have but i had a strange experience which gave me the feelings i had and i was airing them in a nice way.I have used this site for many reasons firstly i knew nothing of .f.m other than what my body was saying and i was diagnosed with f.m in April this year even though i believe i had it for at least 7/8 beforehand but other conditions were masking/hiding it as all muscle pain was put down to arthritis(to name but one) so no one thought to look deeper until i could hardly walk or bend/lift/carry and gave my small self run business as i physically could not do it anymore.I have learnt a lot and hopefully helped some people to by sharing my experiences and giving support and help where i could.I am now tired of defending myself because i shared a post which frankly bothered me and i will continue to share thoughts even if they are not always deemed acceptable as we may all suffer with f.m we have common bonds but we are all equally individual and why should i not air my thoughts or views just as everyone else does? I am glad you have aired your views that's what i hoped people would do hence post.Have a good evening x jo
I really don't think anyone that doesn't actually live with this debilitating and frustrating illness everyday, would bother to go to such great lengths just to get DLA it's hard enough for us that are ill and really need help and support and i'm sorry but it's attitudes such as this that makes it so difficult.
Hi liberty, while i agree mostly with you have i not the right to be cautious as i have been on both sides of the f.m fence even though i did not know what it was for years due to other illnesses masking it.I am not judging anyone nor would i wish this upon people but i cannot change my doubts in some cases also i did apologise in advance.This site is here to air our views ,concerns or just about anything that may be bothering us in our illness or sharing woes and happiness.In doing so i feel that i am being nicely chastised for freedom to express my thoughts however badly written and worded.I have responded to several members with the hope of helping them with their problems and i have been thanked for doing so ,so i guess i get some things right.I hope this all makes sense ;0)
in reply to jolow
I totally understand what you are trying to say and yes you are free to voice any concerns you have,i suppose i have never thought that anyone on here could or would fake the illness that bonds us all,like yourself i have offered help and support where i can and i have also received help and support when i have needed it most,this community is a lifeline for me and many others i never truly understood just how many of us out there have this illness and struggle everyday. To be honest i shy away from anything to do with DLA, ATOS etc i have never claimed and due to the horror stories of so many i doubt i will at present,i currently work 22 hours a week and i honestly would struggle to work any more than this i am finding it harder to make the money stretch i do worry about the future especially if my condition deteriorates like it does and has for so many people on here,tis very scary indeed,anyway i am rambling now Best Wishes sent your way Della xxx
jolow in reply to
Thank you i am so relieved that someone understands what i was trying to say and i agree with you that this site is a lifeline and i thank God for it as it has helped me with this whole new world of esa as i had not even heard of it before finally getting to the stage where i could not continue to work my dream.I feel for you with your situation i cut down my hours until nothing was being achieved so i gave up not in just up as i was not helping myself by continuing and finally met esa ,it hurt going through the system but i was thankfully very lucky and lady was nice at atos.I have not applied for dla yet,i am hoping this subsides and i can get some kind of life back and live a little again.Thank you so much for taking the time to write and look after yourself x
in reply to jolow
Hi Jolow, yes of course you are entitled to post your opinion, absolutely! Please don't feel that you are being chastised. If you have any concerns it's fine to air them, this is the place where we all listen and understand.
Sometimes in life it pays to be cautious and at the end of the day we can't help it if that's how we feel. A large forum can feel a bit daunting for some, hopefully in time most members feel at home here, you are more than welcome here.
I completely understand, so please don't worry.
Take care, we are always here for you. xxx
For safety reasons people are advised not to give out personal information or information that may lead to their address being disclosed.The nature of this site is that people do disclose symptoms of their illness and ask benefit related questions and questions about fibro.If you look through other posts you will read lots of similar questions
You have no cause to be suspicious.
Hello Amanda, I know this thank you and i did'nt assume that anyone would give out personal information i was initially very forthcoming and just thought that it was nice to chat to someone in my own area .If you view my posts i have tried my best to help others and give any advice i could ,it was weird however that this person disappeared without trace within minutes of my suspicion so that's why i thought maybe others on here had any thoughts but i honestly did not expect this backlash,jo
Do you think that the problem could be that when people type messages they can be read several ways because we don't have the facial expressions and gestures to go with the message and these help us to interpret what people say.I think you'll find that most people are very friendly on this site so don't be afraid to post x
Hello,I once again am defending myself here.I have f.m fact ,and i know how frustrating and debilitating this horrible condition is as i exist with it night and day so please allow me to air a different view or concern without being shot down as i did apologise to every genuine person but i still believe what i believe and feel that i have the right to air any concern (real or just suspicious instinct) I know how hard it is looking fit and healthy to get esa i have been through it and gave up my dream of being self employed and running my own small business and i struggle to lift my son up .I do not think i have an attitude and i do not like feeling that it came across in that manner i was just wondering if anyone else had encountered the same type of feeling as maybe i am being paranoid but for some reason that i cannot explain i just felt that this one person was not a real person ? hence question,jo
in reply to jolow
Please don't worry Jo, you haven't offended anyone at all, it's all fine.
To reassure you, if you ever have any doubts, please feel free to contact Admin and inform us of your concerns and we will do all we can to help you at any time.
Jolow I understand exactly what you're saying and agree with most of it. When I tell people I have fibro I get a silent stare!! Because I don't LOOK ill, they think I'm making it up!! 'Pull yourself together' is one of the many comments I have had, and i do think some people claim to have fibro when in fact they don't. For those of us who are genuine these people are a pain - no pun intended but it's true. XX
Thank you sue and i personally know of one "friend" who questioned me continually about my condition and i have withdrawn myself mentally and emotionally from this person after a phone call only last week in which it was stated that this person thinks she is losing her mind and is now finding that she has being doing stupid things like putting milk in the microwave and keys in the fridge things that i know that i have said myself and if i am truly honest now i thought that it was this person who joined this site as she know of it through me , as she knows i'm very quiet and not in touch as i have been over past 16 years i think that she has realised that i'm annoyed and i was thinking is this her on here hence paranoia as she also knows i get esa.This sounds whacky i know but she questioned me on my hearing loss ie is it connected to fibro? i said no she also asked if it shows up on blood tests and how i got referred to a specialist ,i answered honestly and i am now left wondering about this as she has also said she is going to try for esa herself.I would not wish fm upon anyone and it annoys me that this lady has witnessed me struggling to walk or get out of a chair or pick my young son up for a cuddle.So you can appreciate how angry i am on the inside,i do not wish to fall out but i know i am unable to interact normally now so i think it will fall apart in time.I do not wish to be defined by any condition i have and battle daily to be "normal" truth is i exist now mentally i am half of who i was physically i am about a quarter and it's so frustrating and makes me angry with myself for being weak.I have always been very independent as i have resided in England many years but all my family live overseas so i had to be.sorry i am rambling now but maybe it explains why i am paranoid, x
in reply to jolow
Sorry to hear all of this Jolow, it's perfectly understandable how you feel. Don't be too hard on yourself, I can understand your feelings. We are here to listen and to help and support you as much as we can. xxx
i think everyone should be able to 'air a different view' i dont think jolo means any harm in what she is asking,just putting her point across,i think she has been sensitive in how she has written things,i dont feel affended by what she has said,i also understand the veiws of the other posts,i almost get the feeling that when jolo questioned this person on the area she lived in was beacause they could have something more in common because of the area they lived in or maybe it would have been nice to have met a possible friend locally,maybe jolo has had some exsperience in her life that sometimes just makes her feel suspicious,i dont wish to interfear,just trying to see both sides on what seams to be a sensitive post,wishing you all well and i hope you have a lovely restfull sleep...xxx
Thank you pinkblossom(lovely name makes me think of summer) i did not intend to upset anyone on here and your quite right in your assumption of finding someone locally who is technically rowing the same boat as myself but the boat sunk out of trace within my asking a question so am i paranoid ? maybe maybe not who knows.I am sorry for riddles my brain is overtired been up since 4am and still cannot sleep and after upsetting others and myself now it's unlikely to be restful.but thank you i appreciate your comments, x jo
Hi everyone,
I think the worries you are experiencing may come from the fact that some people join sites and are so-called internet trolls. I think that your concerns are related to this maybe?
In the FibroAction blogs, Lindsey Middlemiss has posted what you should do if you feel concerned. However, as many have said most are genuine and come here to chat to others to gain understanding / empathy.
Best Wishes
Emma
Just like most other illnesses most things can be faked but fibro does have certain markers that can be seen in tests. Like i have spinal injury which also has crushed nerves and swelling of joints which can be seen, also its such a compicated and only just recognised recently as a medical problem that to try and fake for a DLA claim is beyong me. Its hard enough for us with the illness to get DLA that a person faking must surley be idiotic.
After reading these posts carefully, i think i see where jo is coming from. For many years now, certain types of people have jumped on the depression bandwagon (i actually know 2 people who have done this!) They dont want to work and like the fact that the government gives them benefits so they say they have deperssion. "Its easy, all i have to do is turn up at my gp and say im depressed and then they fill out my benefit forms" said one person when i aske them why they do this. For people who have true depression, it must make their blood boil! The same for stress and back problems too i think. It makes me very angry indeed. Now finally the government seem to have cottoned on to this and are now going over these cases......BUT the problem is that the wrong people seem to be targeted =; people like ourselves are being humiliated, being made out to be liars and made to beg for any crumb of money they decide to throw at us and the stress must be truly awful! Its wrong and it stinks!!! But as usual, the innocent are losing money, the people with genuine illness such as ghastly fibro while the spongers seem to be getting away scott free......will the government ever get it right?????? I do believe that certain members of the public will be looking at diffrerent illnesses to see what they can "develop" in order to continue to recieve benefits, it would be nieve of me to think otherwise. I myself do not claim any benefits, as i am in a very fortunate position of OH having a good job and im so thankful for that because i read all the blogs of friends who are going through the minefield that is dla and i truly dont know how they all cope with the stress and worry of it all....im afraid in todays society there will always be certain people who jump on any bandwagon for their own gain and its always the genuine cases like my friends on here who seem to suffer.....gentle hugs to you all...charlii x
I, too, understand what you mean - I daren't tell my OH's cousin what I have, as she manages to develop every illness that anyone in the family has (she's had 6 abdominal operations, and all but 2 of them have shown nothing of concern!), and - as we are diagnosed symptomatically, rather than by bloods - it seems like a dream illness for her! For us, it's the bane of our lives, but she's one of those people who enjoy the attention that illness brings. Which is an illness in itself, I guess.
Sara xx
Hi sootyb,thank you for that post ,i am sorry that you have had a similar experience it really is a horrible feeling to have to hide your true feelings,illnesses and hold your tongue ,i know i doing it myself for obvious reasons.I hate feeling this way on top of everything else and i am trying my best to stay stress free it's soooooooo hard! lol so i really appreciate this post xx have a good day
Hi, I have not read everything on here, but in answer to the first question and a couple beyond, when I first came on here I made sure my user name is nothing like my own, purely through fear of discovery. I wanted to be able to discuss things freely, to get advice, without it being used against me another time. The reason? I was on Facebook last year, before it became so easy to spread everything, connect to a friends friends etc. I was open knowing colleagues could see what I had to say and, as I was grieving my pain was obvious. Two months later, at a meeting with the local health advisors [connected to work - forget their proper name] a paragraph that I had written was shown to me and used out of context to try to show I was not mentally able to continue my work! I nearly lost my job. This hurt me considerably and left me unable to trust this site. I am sorry, I have never had cause to suspect anyone on here, but that has been found out through using this site. I feel much safer, but still do not reveal my whereabouts or who I work for. To be absolutely honest, anyone can become a member on here. I have however, been able to ask my questions and recieve the support I so desperately needed and given support accordingly.
You are not wrong to be suspicious, you are right to query someones intentions, you can reassure them and go to the one to one messaging area to give more individual support and advice without becoming available for someone to misuse a comment you have made, against you.
This, of course, is all my opinion. Everyone on here is allowed that and no one should be abused for releasing tension through discussion. I read some tension on here in this thread, I think some comments have been misunderstood. Be kind to each other, we all need to be.
Soft hugs
Hi Sarah -jane ,Thank you for your post ,i have a tendency to ramble ,small life does that lol anyway i appreciate your comments big hug x jo
Hi I am fairly newly diagnosed I work and some days feel suicidal...I'm so ill..I'm not faking or looking for dla etc.took me ages to even believe fibro was a real illness....thought I. Was goin mad ......we must tar everyone with same brush........u
in reply to mazzer2
Mazzer sorry to hear you are having a tough time of it at the moment. Please be assured that we are here for you and we do care about you. If you have any worries or concerns please do not hesitate to discuss these, we will always do our best to help and support you in any way we can. If you would prefer to discuss anything privately, please feel free to private message Admin, we are happy to help at any time.
Take care. (((hug))) xxx
Hi Mazzer2,I totally understand how you feel,i went through years of thinking "it's all in my head as docs blamed all my pain on arthritis ,my terrible memory on stress,rashes and allergies on heat or cleansing products, Vitim deficiency on poor diet and so on,it took 7/8 years to finally get diagnosed ,i too thought i was going mad between pain ,exhaustion,memory loss,and many other symptoms and also felt on the brink several times throughout those years as no one really listens or can feel your pain.I know how it feels even now to look physically well on the outside so please re read posts as i am not saying that everyone on here is not genuine ,just one person who i had encountered who made my alarm bells ring and i did apologise in advance in first post to those of us who are genuine.If i am being honest here i would have found it very hard to understand this illness if i did not have it and feel it's every effect so i can understand people struggling to accept it in themselves or in others.I hope i have made myself understood as i am very very tired and don't always make sense please do not think i am taring anyone as i would have to tar myself first.Have a good day and i hope now that you have been diagnosed that you will receive some help and medication so that it may enable you to feel a bit better and not struggle so much.X everyone on here will help with any questions you have and also will be happy to just say hi or give you any advice needed so do not despair and it really lift your spirits to know you are not alone which is why this site is a lifeline to us x
hello everyone thank you for your comments and support today I had my first session of reflexology and I feel almost human again .....I know we are all in the same boat and the site is a help all best wishes x
I have had so called friends follow me to sites like this and I only recognised them by their mannerisms. But yes there are people out there who will 'fake' an invisible illness such as Fibro to get benefits, and to me that is just silly. It is a nightmare having to prove to people that I have these problems. One thing I would never do is fake an illness, it is just not worth it. When anyone outside the site, or outside of my family asks me what it entails I say this 'it is a chemical imbalance in the brain that makes pain signals go skewiff' and I leave it at that. xxxxx
Hi thanks for your comments and it made me smile as i would never be able to manage that statement without completely messing it up lol x
Now I never said I do not mess it up lol, I quite often do, often my speech levels resemble that of a drunk talking jibberish xxxxx
Wow Ozzygirl, that is a really good way to explain fibro to people....i think i may need to pinch that and i agree with your post too. Its a sad world we live in sometimes and there are some not so nice people out there too but thankfully everyone here who i have talked to or read about on their blogs is so lovely and genuine and im so pleased i found you all. I enjoy catching up with your news and feel for you when you are sad or hurting and i wish i could make everything alright for you all. Please take care everyone....gentle hugs...Charlii xx
Pinch away hun, if you find it easy to explian using that then go for it. I remember going to see my GP one day as I was in a lot of pain and had been without any sleep for three days. At that time we did not have the posh system we have now that you use to sign in giving receptionist time to do other stuff, like drink tea or make small talk. The lady in front of me gave in her name and she had a brown envelope in her hands. She tried to hand it in saying it was DLA forms for the GP and she was told to take them in with her. She hobbled through on her sticks, she was about late thirties I would say, I thought poor thing. Her number was buzzed and in she hobbled. 30 minutes later she hobbled out again completed forms in hand and I thought no more of it. After my appointment my hubby said we may as well get the shopping whilst we were out, save going home and going back out. As we arrived at the mall I spotted a very posh car pull up and watched dismayed as the woman on the sticks 'jumped out of the car(that quick I thought she had fallen out), turned quickly, said bye' and 'ran all the way to the mall doors and in high heels too'. So I shouted 'Hey love, you left your walking sticks in the car and you have the wrong shoes on'. Her face went bright red and she put her head down and ran inside. And it is people like this that 'fake' things to benefit themselves and get the genuine ones like us a raw deal as well as a bad name xxxxx
It's the fakers who have ruined our welfare system which was the envy of the world a friend of mine with severe back trouble, a pillar of society a special constable even, was filmed by the D W P shopping in asda loading and unloading it from his car they then filmed him up a tree sawing away some of the branches this man was paid a pension from his employers they unfortunately cannot take that back only today in the papers is a man who claimed to be unable to walk (wheelchair bound) filmed dancing a hula, lifting a woman and diving into the pool while on holiday at last someone has been given a decent sentence and at least five years added to his four-year sentence if he does not repay £300,000.
Read more: dailymail.co.uk/news/articl...
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All of these cheats need to be given stiff sentences when caught (stiff like us with fibro wake up.
Well done ozzygirl with shaming that woman I would have done the same thing
god bless Bob
Hey Bob, what tickled me is that she knew, she had no idea who I was, I could have been anybody, I doubt she even saw me at the surgery as she was obvioulsy too busy concentrating on making sure she looked disabled. What really annoys me Bob is the fact that they are not REALLY catching cheats by using ATOS, they just throw people into the work queue, that is not catching cheats in my opinion. To catch a cheat they need to be watching someone they suspect of cheating, not someone who is ill. For me they are saying, 'ATOS says nil points, so therefore you must be a fraudster'. If I had known ATOS could cure me in 42-43 minutes flat I would have asked to see them 20 odd years ago and then maybe I could still be working and not being made to feel like the scum of the earth because I dare to have an illness they cannot either be a) bothered about or b)know nothing about or c)they have no heart and all they can see, like MPs, a pay packet at the end of the month. There I have vented for the evening. xxxxx
Just read that article, gets me how it took them so long xxxxx
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