Fibromyalgia.Is it too easy?

All your fibromyalgia experiences, questions and answers.

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Re: Fibromyalgia.Is it too easy?

Postby denys » Fri Nov 22, 2013 12:04 am

It will show up on facebook as it updates, I know what you are saying and understand completely, yes it does annoy me, what I was trying to do was explain why some members might get upset at your post.

I think there are always going to be people who try to abuse the system and some innocent people are going to get caught in the nets as they try to catch out the fraudsters :( :( :( :(

My daughter and I watched someone we know only today, park in a disabled bay using a blue badge when she isnt the person the badge was intended for and they werent in the car or shop :shock: :shock: :shock:
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Re: Fibromyalgia.Is it too easy?

Postby xxfibeexx » Fri Nov 22, 2013 12:14 am

I think we all have to remember that FMS affects sufferers in different ways and different levels of severity and that even what is 'normal' for someone can change day to day.

I am very guilty of overdoing it when I am having a good day/week. My last stunt involved me picking blackberries for 3 hours straight. Any photos will have seen me grinning my head off, waist deep in brambles having a blast. What photos wouldn't show is the subsequent flare this triggered the weeks and weeks off work and the increasingly scary doses of oxycodone.

My point is that pictures only provide one moment of insight into someone's world and not the full story.

Also as for DLA I receive this and have work, always have. The forms are a pain and yoy almost have to write in a specific way. Nothing can be intuited or assumed by the decision maker. Worth reapplying and getting some help from CAB or a local charity. I got help from a local charity here that focuses on assisting disabled people access all services in the community
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Re: Fibromyalgia.Is it too easy?

Postby whoami » Fri Nov 22, 2013 12:36 am

My whole issue here is.....How do you know? What gives you the right to say, you know they are faking? Some days my symptoms are as bad as anyone with fibro and other days, You would consider me a fake.

Something that irks me is....and I heard it on another forum and left was..... I have a much more severe case! The worst ever heard of!

I do not believe anyone who is diagnosed with fibro has fibro any more or any less than the others. If you have it, you have it. Just like being diabetic, you either have it or not.

I could say on days that I can't move, am throwing up all day, have a migraine and in tears, that I am worse or have a more severe case than others. I don't , I would not insult others with fibro by saying that.

I feel that the way your symptoms are handled, your attitude, treatment etc. determines how you are affected that day. Some days we have everything under control and the next everything is all gone to h***!

I am no worse than anyone else because I am on a heavy dose of Fentanyl, and Oxycontin and that I am not able to work. The person who can get away with only needing Co-Codamol and can work 30 hours a week does not have a milder case than me. We all suffer from this illness.

If anything irritates me it is someone who says or thinks that.
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Re: Fibromyalgia.Is it too easy?

Postby Fibro_hell » Fri Nov 22, 2013 12:44 am

Because people have openly admitted it :/ Pretty hard not to know if they tell you.. I quote "if the system is there to be abused then i'll abuse it "
And about mentioning severe case this is what my Rheumatologist told me so ..
I think i may as well just delete this cause
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Re: Fibromyalgia.Is it too easy?

Postby sapphirerose71 » Fri Nov 22, 2013 12:59 am

if you know who these people are you can always grass them up but only if you are very very sure. Although you are probably better off concentrate on getting the most out of your own life and forgetting about them. you really don't need all that negativity.
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Re: Fibromyalgia.Is it too easy?

Postby AJay71 » Fri Nov 22, 2013 1:45 am

l could not agree with you more. What a brave post. Well done for posting it.

I can't stand people telling me how they know someone with it and they can do X y and z.
I have been genuinely in pain since 1993. I held down a position in the NHS until finally in 2003 the frequency and severity of my flares were such that they recommended that I leave because in their words "there is no position full or part time within the whole of the NHS that could accommodate my condition" .

At that point I hadn't even been properly diagnosed despite having had loads of tests X rays bloods etc etc. An MRI in 1999 discovered a broken vertrabra at L5 so this had been blamed for everything. My mobility has been getting steadily worse over the years.

To cut a long story short ~ I'm now using a wheelchair. I've seen a neurologist and at last I got to see a rheumatologist got all the usual tests then I got in to see the big wig ~ and on the 20th Dec 2012 the head Consultant Rheumatologist (BUPA) gave me the diagnosis.

It is / was my understanding that only Rheumatologists can give the diagnosis of Fibro.

I wish I could work. I wish I could walk. I wish the Fibro fakers could feel what real Fibro REALLY feels like even just for one day!
I wish they knew the humiliation of needing someone to help you get dressed, help you on and off the toilet. .

I miss my old life ~ I mourn the death of my social life ~ the friends I've lost because of Fibro.

I despise this syndrome
Whatever you can do or dream you can, begin it. Boldness has genius, power and magic in it. - Goethe
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Re: Fibromyalgia.Is it too easy?

Postby helen.whittaker.125 » Fri Nov 22, 2013 2:51 am

Hi
I don't think fibro is an easy way out, it took me 12 years if tests before I was diagnosed I was diagnosed earlier this year at the same time they discovered I've been living with a broken back for 13 years minimum. I've had to give up work by order of my GP before I do anymore damage to my spine. I do like others take offence to the way you worded your post, I'm sure it was meant in good intent but there are a lot of us with fibro who would love nothing more than being allowed to work. Please count yourself lucky instead if slating those of us who are in so much pain all the time!!! Oh and yes if I have a day I can do things I damn well do them no matter what the price is I have to pay as they are few and far between


BB Helen xx
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Re: Fibromyalgia.Is it too easy?

Postby SchroedingersCat » Fri Nov 22, 2013 9:08 am

Hello Fibro_hell. I've not met anyone who seems to be faking it, but I do get your point that it would be quite easy to fake if you were so inclined, and I'm sure people do - I've known people fake whiplash to claim off insurance after a minor accident AND spend 6 months on the sick whilst still playing football and going to the gym! I'm one of the odd ones - and I disagree with Whoami when she says fibro is fibro is fibro - I definitely have a mild case of it as I don't take medication other than the occasional over the counter painkillers, I work full time, have a physically very active hobby which involves busy weekends camping in all weathers, have a very large and energetic dog, 3 cats, an allotment, a 3 bedroom house and a partner to look after. So many people on here are in wheelchairs, are housebound, etc etc - how can I NOT be a mild case? Yes, I am in pain all day every day, yes I am tired all the time, but I achieve things that so-called healthy people don't. I think it took a lot of courage to write your post, which was clearly born out of a great deal of frustration, and I think people's reactions say more about them than they do about you. There's an old saying, "if the cap fits, wear it" - if someone has a somewhat guilty conscience about how they live their life, then maybe they will post nasty responses.....just a thought...
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Re: Fibromyalgia.Is it too easy?

Postby mandymoomoo » Fri Nov 22, 2013 9:20 am

I think there will always be people out there who abuse the system in any way they can and give ourselves with genuine conditions a bad name. It makes us all angry I'm sure but if they're desperate enough to have to falsify illnesses and disabilities as serious as Fibromyalgia and ME in order to claim benefits then leave them to it I say. Please don't bother even thinking about these people, you have enough to worry about in caring for yourself! X
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Re: Fibromyalgia.Is it too easy?

Postby crazycat36 » Fri Nov 22, 2013 11:17 am

Can i just say that according to what u say i must b faking it....let me explain

I worked long hard hrs since i was 14 before that it was paper rounds while working right up to about 1 week before i gav birth to each of my 4 children and i had full intensions to go bk to work after my maternity leave but my husband upped and left (there was lots to this which included social workers police and lawyers) anyway being left with 4 young children i was instructed by social work to go onto benefits they actually took me to the office and sat with me to make sure i filled out the forms as they didnt want me working till my youngest was settled at primary school....so for yrs i worked hard in my house looking after my children and all what that intails with just basic money but somehow we managed and when my youngest was just about to start nursery i started feeling very unwell result was i needed my gall bladder out which didnt go to well and triggered severe fibro and i became bedbound most of the time and also had loads of mini strokes (TIAs) anway in the space of about 6 months i got ct scan, mri scan, xrays and obviouslly loads of bloods taken along with loads of other test and rhuemy then diagnosed severe fibro with phsoriatic arthritis and gp also told me i was goin through the menopause (aged32).....

Not long after being diagnosed i went to see the lone parent advisor and she asked me about my health so told her the basics and she asked why id come and when i told her its cause i wanted a job she laughed and gave me the dla forms sayin i should b on dla not out working i argued with her to the point i nearly got thrown out as i was gettin that loud but eventually i took the forms and applied for dla and since begining of 2006 ive been on full dla (both parts) and yes i hate living off benefits

When my children were young i could tell my self that it was inly for a short time then i can contibute again to the goverment but unfortunatlly thats not happened its nobodys fault its just life if i could hav one wish it would b fit enough to get bk out to work but i hav to accept what the drs hav said and i no that every yr im gettin even worse but ill keep fighting it and hoping ill get bk to work as im only just comin up for 40 and cant accept that ill never work again as i was always a worker even when i didnt go out to work believe me i worked lol.

Yes there is benefit cheats and there will b some that say they hav fibro but the people i meet that no about fibro hav someone they no with it and tell me what a horrible thing to hav and as i say i wouldnt wish this on my worst enemy

Anyway just thought id tell my story gentle big huggs to all fibro sufferers out there a better day is just around the corner so smile it uses less muscles and causes less wrinkles xx
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Re: Fibromyalgia.Is it too easy?

Postby denys » Fri Nov 22, 2013 4:58 pm

Crazycat I love the advice about :-D :-D :-D :-D :-D much better than :cry: :cry: :cry: :cry: :cry: I think everyone is entitled to their own opinions as this post shows.

I agree we have enough on our own plates to worry about without worrying about what others are doing, but it is annoying when we all end up being pilloried in the media and the word fibromyalgia elicits that :roll: :roll: :roll: :roll: :roll: from people.

But I fear that until we manage to educate others on the horrors of fibro that isnt going to change, I hope and pray for the day when there is a simple test that confirms categorically the diagnosis then it wont be possible for people to either pooh pooh or fake a diagnosis :-D :-D :-D :-D :-D :-D

Until that day maybe we should just be as nice as we possibly can be to each other, because out of everyone we know, we as fellow sufferers should know the effects whether we have a mild case or a severe one :shock: :shock: :shock: :shock: :shock:

Whoami I too disagree on us all suffering to the same degree, pain is subjective and so you might bear your pain better than I do, or you may need to use a wheelchair everyday whereas I can manage to walk. I was told by the Rheumatologist that there are degrees of fibro. But I agree with the sentiment that it doesnt really matter to what extend someone suffers, its the fact that they do suffer that counts
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Re: Fibromyalgia.Is it too easy?

Postby painprincess1 » Fri Nov 22, 2013 6:22 pm

well i for one have had it years but i cant get benefits for it so im sure more ppl dont.and what i get to live on cant take me away on hoils thats for sure. but i do no what u mean everyone seems to know someone who has fibro your never change that so its not wroth stressing over hugsxx
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Re: Fibromyalgia.Is it too easy?

Postby whoami » Fri Nov 22, 2013 6:37 pm

Crazycat........you should be very proud of the fact you managed to raise 4 children on your own and with a chronic illness. I am sure it is your positive attitude that keeps you going. You have given back to society already. Raising your children...you never know, one may become a Prime Minister, Noble Peace Prize winner, a plumber or a school helper. You raised them. Your ability to be there as a friend, neibour and confidant all constitute giving back.

I worked 3 jobs living on my own while finishing school, left home at age 15. When married I worked on our farms, raised my children, kept a home, canned our food , quilted and sewed our clothes and participated in my childrens activities. I can appreciate the fact you raised your children on your own, it is a full time job.


Denys....I have said before ( or at least I hope I have, LOL), that what I like about this forum is we are all different but share one common thing, fibro. We are able to have different opinions and be able to voice them, ask questions as to why someones opinion is different to our own and get answers.

So as there is no confusion, when I say that I don't think anyone has a more severe case or less severe case than others, I am not dismissing the fact that they have fibro. I am saying, or trying to, that we all have fibro. How it affects us is our ability to cope is not the same.

Just because someone happens to have a body that is able to tolerate pain more than someone else does not dismiss the fact they have fibro. and the other way round.

I am saying that I don't feel it is fair to someone else by saying my case is more severe. There are people who feel exactly the same way as they did when a Dr had maybe said...oh your pain can't be that bad or that they are somehow not deserving of treatment or meds.

I belonged to a support group where a man continuosly heard how others had a much more severe case than him. He became so insecure, questioning himself and his level of pain and his inability to cope. He could not understand how he could be in so much pain but others had said his case was not as bad as theirs. He heard, you don't know what pain is, I have the worst case heard of, I am on the strongest pain medication out there and you are not, you manage to go to your cottage every weekend. He left the meeting one evening, went home and commited suicide. He left a note...it was read at that support group by his family...........What support did he get?

This is why those words "more severe" irritate me so much.

Thanks for letting me have my say!
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Re: Fibromyalgia.Is it too easy?

Postby FluppyPuffy » Fri Nov 22, 2013 9:57 pm

This was an interesting choice for a first topic. Usually when someone joins our little FibroFamily, they take a little time to say Hello and introduce themselves first.

Fibro_hell wrote:Because people have openly admitted it :/ Pretty hard not to know if they tell you.. I quote "if the system is there to be abused then i'll abuse it "

Just because they had said these things to tell you, how can you be 100% sure that they are actually doing this?? For all you know, they could be doing it to wind you up and then watching as off you go and let it all out. If they are so capable of convincing people that they have something like FM, then spinning a yarn to someone about how they are claiming every single benefit possible will be a breeze, with the added bonus of knowing that it will be spread far and wide.

With you needing to get your point across, esp on FaceBook, then maybe you should consider joining, that way you would be able to address them directly.
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Re: Fibromyalgia.Is it too easy?

Postby SuzyVB » Fri Nov 22, 2013 11:05 pm

I must admit after venting I did wonder if this post was a troll. If so we've all been guilty of feeding the troll
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