Fibromyalgia.Is it too easy?

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Fibromyalgia.Is it too easy?

Postby Fibro_hell » Thu Nov 21, 2013 10:12 pm

Fibromyalgia.Is it too easy?

It has came to my attention that there are many disingenuous people who are claiming they have Fibromyalgia.This must surely directly affect all the sincere sufferers out there.
For one,you mention to someone i have Fibro and they reply with "ah ok,I know a friend who has that and they get more done than me" or "is that even real?Sure we Adam has that and he is away on an extreme sports holiday atm". How does that make us feel when we can not even grab a drink of water beside our bed.

I myself got diagnosed with Fibro from a specialist consultant after around 3 years of tests after being referred to a consultant by my GP after more than ten years of the usual complaints.They told me to come to a diagnosis you need to rule out everything else which requires MRI scans,CT scans,X rays,Blood tests and a barrage of other tests.Of course i welcomed this and i am soo very thankful with all the help i was given and it is good to know that it is not M.S or anything else that they were looking for.It was a very long haul tho and extremely frustrating having to wait months between every test or appointment.But at least i now have a diagnosis and i can say to friends/family that this is what i have and this explains why i can not visit you or why i have to put of this Sundays lunch etc...

But what i do not understand is how can someone go to their Dr say they have the Fibro symptoms which they can just google and the Dr does this "pain test" and they say Oww that hurts and within ten minutes they now have Fibromyalgia and a few weeks later they have applied for benefits and are now of on holiday uploading pictures of themselves surfing/drinking with friends/riding those rodeo bull things/hiking/clubbing/bike riding and doing things i can only wish i could do.

Has Fibro became the go to diagnosis for a quick and easy way to an easy life on Benefits? To me it sure seems so.
Is it the Drs fault or the patient? Surely it's more of the patients but i also think that Drs should not be so quick to jump to a diagnosis especially as i know from first hand experience that what i consider a proper diagnosis can take years!

Now do i think that most people claiming have Fibro are faking? No,that is not at all what i am saying but i do know there are many many people lying through their teeth just in order to get of Job seekers and get more money.Heck,a friend was over visiting me the other day and showed me his friend with "Fibro" he gets over £300 a week on various benefits including housing and quite literally his entire life looks like a party in pictures.Does that annoy me?Hell yes.

Then when i apply for benefits i get nothing.0 points in every application for DLA.
I have a theory tho,is it because i have always worked?And they can see this and just assume, well he has worked for x amount of years fine so he does not need it?It does make you think.

I have been doing some research and when i analyzed it all and really looked into it i noticed a few striking things. The ones who are on benefits have never worked or have never held down a job for long and mostly always complained about JSA not being enough.They all also tend to be the complainers in life.You know the ones that no matter what they have something to complain about.
Then the genuine people i know who suffer from fibro are the ones who do actually hold down jobs and are contributing to society and not just taking money to lie in bed,winge on facebook and then go out partying.

Do i find holding down a job hard?Of course i do.In order for me to get to work in the morning i rely on a friend who after she is ready for work drives to my house and helps me get ready.Lifts me down my steps and helps me lift my wheelchair into the taxi and sends me of to work.I am one of the more severe cases of Fibro according to my Drs as i am in a wheelchair half the time due to the unrelenting pain.The other half of the time i try to do exercise in the gym as all research shows that exercise and an active lifestyle does help no matter how hard that might be to achieve.But i get on with things and i am better for it.I feel more a part of society as i get to work and put my mind to work 5 days a week even tho the Fibro fog vastly reduces my ability to concentrate id much rather struggle in work than waste away my day in bed watching daytime tv.

Another observation i have made is that the ones who have been recently diagnosed have always been the lazy ones.Never been active,never done much exercise,eat really poorly,some have a history or drink or drugs.There just has to be some connection there.No one will be healthy and feel 100% if that is what they do and to me it seems that Fibro to some is the new term for unhealthy.

I do know i am generalising in some cases here but it has really made me think.
It has made me think to the point where i feel ashamed to say i even have Fibro as it is so stigmatized.

I am not sure what i was expecting to get out of this post,perhaps i just needed a place to vent but i am sure there are others who feel the same as i do?Being the one who is genuinely struggling yet trying to better their life while there is a mass of 20 somethings out there living it up on benefits and ruining the very true illness of Fibromyalgia.

To all you genuine sufferers who are trying to get better i give you the warmest hugs and to the fakers out there.I hope you know you are screwing with peoples lives.

God bless
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Re: Fibromyalgia.Is it too easy?

Postby Garyl » Thu Nov 21, 2013 10:17 pm

I Was diagnosed with Fibro by a very good rhuemotologist, who on telling me had tears in his eyes and kept apologising, terst have confirmed this and i suffer terribly.
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Re: Fibromyalgia.Is it too easy?

Postby Grannyjac » Thu Nov 21, 2013 10:27 pm

I find exactly the same thing. I was diagnosed in 2003 and have always been in full time employment. However, I am having a difficult time/flare up at the moment but my employers are not at all understanding (which in itself makes me feel worse). It amazes me how some people say they have Fibromyalgia yet, as you say they lead full and very active lives and get disability allowance. It appears that if you don't 'know' the system you don't get any help or allowance. I've been on medication for 10 years now but it's getting worse.

Hope we can all help and advise eachother on here :)
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Re: Fibromyalgia.Is it too easy?

Postby bettyboop27 » Thu Nov 21, 2013 10:28 pm

No life with genuine fibro is not easy. I was diagnosed after the usual MRI and frequent blood tests for rheumatism, which also discovered my diabetes. Most of my pain is worse in the cold and so I am moving my mother in law in with me so I can be her carer as she suffers from degenerative spinal osteoarthritis, whilst my partner works. I do understand that people think it is just a label and I hope no one uses this as an excuse or for sympathy.
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Re: Fibromyalgia.Is it too easy?

Postby Fibro_hell » Thu Nov 21, 2013 10:37 pm

I have sympathy for you all.Your Dr seems like a very nice man Gary!
When it comes to working grannyjac what i do is use my holidays for my flairups..not ideal i know but employers really are not sympathetic,i am very sorry you have to go thru that!
So i am not the only one who gets worse in winter betty!That is a very kind thing you are doing,i hope you have the stength to help your mother n law!
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Re: Fibromyalgia.Is it too easy?

Postby grannypat » Thu Nov 21, 2013 10:39 pm

I have Fibro. I am retired. I don't get any benefits. I lived on my DWP and a small work pension. This year I had to give up my family home of over 30 years because it was so cold it was making me so ill. My doctor helped me get a social housing flat. I don't think I could have got over another winter. It makes me mad when I know people getting so much money in benefits that have ever worked. Thanks for listening.
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Re: Fibromyalgia.Is it too easy?

Postby Fibro_hell » Thu Nov 21, 2013 10:42 pm

I am reading the responses on the facebook page but sadly i do have a facebook to reply.It seems many people are NOT reading what i am saying and taking offence.People wishing they were me? Seriously before you comment you really should read and understand what i am saying.
And just so you know do you think i have someone helping me free of charge 365 days a year? No i pay for carers and i never even mentioned how i get back into my flat.
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Re: Fibromyalgia.Is it too easy?

Postby SuzyVB » Thu Nov 21, 2013 10:55 pm

In part I agree with what you say. I've been under rheumatologists for 6 years & was diagnosed 2 years ago with fibro & ME/CFS although my consultant is still convinced I have a rheumatological condition due to some odd positive bloods that show inflammation & an auto immune condition he just in his words needs to work out which one of the 1000's it could be.
The only thing I disagree with is your comment about those on benefits being those who have never worked. I've worked since I was 13 part time & since 16 full time. I'm almost 42 & have spent since Jan fighting to try & keep my job which resulted in me being bedridden in June. I've been awarded DLA I have not applied for ESA as I get PHI from my employers who in Oct decided, in conjunction with my GP & Consultant I was no longer fit for work. This has been a hard blow for me but I have tried to make it positive by seeing it as time to allow me to pace myself. I get DLA as I am unable to walk anywhere without my crutch and even then no further than my driveway or I end up in a heap on the floor. I fought to keep my independence financially and physically for the last 5 years before admitting defeat & applying for DLA. So please don't assume all fibro sufferers on benefits are frauds. If they do manage to find a treatment regime that gives me my life back I'll be the first one back out to work.
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Re: Fibromyalgia.Is it too easy?

Postby Fibro_hell » Thu Nov 21, 2013 11:04 pm

Suzy i NEVER said all Fibro sufferers are frauds?! My entire comment was based on MY experiences with people i know or friends of people i know.I wish i had a facebook so i could reply to some of these people commenting cause seriously feels like no one has actually read and understood what i just wrote..

I think everyone needs to re read what i wrote :/

I am sorry for what you are going through i really am but i never said all fibro sufferers are frauds...that in turn would mean i am a fraud which i am most definitely not..
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Re: Fibromyalgia.Is it too easy?

Postby SuzyVB » Thu Nov 21, 2013 11:13 pm

Ok maybe fibro fog kicked in halfway through reading it was just how it sounded. I left a film showing at the cinema earlier in the year as the character was fraudulently claiming fibro straight after being hit by a car. With Hollywood depicting it like that it just makes genuine sufferers of this horrid illness look like frauds. The film by the way was called identity thief.
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Re: Fibromyalgia.Is it too easy?

Postby SuzyVB » Thu Nov 21, 2013 11:13 pm

Also Facebook readers can see your responses if they recheck the post
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Re: Fibromyalgia.Is it too easy?

Postby MichelleJ » Thu Nov 21, 2013 11:24 pm

I was diagnosed by a rheumatologist and have a joint diagnosis of fibromyalgia and Cfs/m.e. I was actually diagnosed very quickly from the point of it really kicking off. Before this I'd always had symptoms but never known why and they weren't severe. At the point of my diagnosis I was still working 50 hrs a week. My first major flare when it all really started I was off work for 3 weeks then managed to go back but I know now that I actually made myself worse going back to so many hours and such an active job but I never knew then what was wrong. At diagnosis I was advised to slow down and really pace myself. Told them I couldn't, that my job didn't allow that and that I also got a child to look after. So ignored the advise and I got worse and worse to the point I had to give up work altogether cos by then I couldn't tolerate anything. Then I learnt to pace.

Over the past 3 years since being diagnosed and stopping work I have got steadily worse although seem to have levelled out a bit recently. I need care now and have a paid carer with me 25 hrs a week but looking to increase this to include weekend care as split up with my husband so now single mum and need more help. She helps with everything, does my personal care for me, does all my housework, helps me prepare food, takes me anywhere I want to go and pushes my wheelchair as unable to self propel and useless with an electric one. I also have family here a lot too helping me. I can only drive short distances now and need to use hand controls to do that as can't drive with my legs cos they lock up. And to think driving had been a major part of my last 2 jobs, used to drive all over the uk without a second thought.
Some of my care is funded through the council and social services, some I pay for.

I am on benefits and not ashamed to be as I paid into the system for years and now I genuinely need to be on them. I get higher rate care and higher rate mobility dla, wrag group ESA although should be in support group as meet the criteria now but as I need a home medical it's taking forever to sort. But not too worried now as they're in the process of moving me to income related ESA now I'm on my own so my money will start again soon. I am also about to claim council tax and housing benefit and I get child tax credits and child benefit too. So I will have a really good amount of money coming in soon from benefits but as I said, I'm entitled to them and paid in over the years so see no reason to be ashamed of that.

I try to help myself. I exercise through swimming twice a week which my carer takes me to. I got decent meds at last which make a big difference. I also have acupuncture through the hospital. I make cards as a hobby when I feel up to it. I'd love to work but it's just not an option for me. It takes all my energy to just do what I do. Now I'm on my own with my son I generally end up being in bed whenever he visits his dad just to catch up and avoid relapsing. Getting up for the school run kills me so now I'm only up for just over half an hour to feed him and see him out the door. He walks to and from school on his own now as it's only a few mins away and he can trusted to go, the school know and will ring if he ever doesn't show up. Then I go back to bed until my carer arrives and then I start my daily routine.

I never like to judge if other people are genuine. I know a lot of people with fibro and or m.e that I've met since being poorly and theirs not a single one of them who I would say is faking it. They are of differing severitys, some have a lot of care like me and often end up bed bound or housebound like I do, others are less severe and are managing to hold down jobs. I know I have a very severe case of it as do a few of the friends I've made who have it. I've been told it won't go away and I'll never suddenly just get better as its a life long illness once you have it but that the best i can hope for is to manage it and hopefully avoid too many ups and downs with it and avoid the boom and bust sequence. I do admire though anyone like yourself who is managing to hold down a job while having this.
Dx with fibromyalgia m.e/Cfs and asthma
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Re: Fibromyalgia.Is it too easy?

Postby whoami » Thu Nov 21, 2013 11:25 pm

Fibro hell....I am sorry to hear that you are in so much pain .

I would like to share with you about the life I live. The life in which many things we share, many symptoms and much pain. I will try to keep this short.

I have been diagnosed with fibro for almost 25 years. I had a serious accident at work that triggered fibro in me. The first years were hell. I wanted to die. I was newly married 6 months. for 2 years I could barely move. I lived in bed. My hubby, bless him, I could not have been given any more of a loving understanding man.

With the help of Dr's, therapists and medication my life has become more tolerable. I have become at peace with what I have.

For 10 years I waited for disability to be sorted out. They didn't doubt in anyway what the problem was and that I would never work agai. Because of my injury at work and the onset of fibro it confused the decision on how much and who should pay me...hence the ten years.

In those ten years waiting for money and medical coverage we lost everything. Now we say, it was only stuff, only money.In those 10 years we went to many appeals etc and listened to people who were claiming for benefits and being either granted or refused.

I like you have dreadful days, days when I go to that dark place. Days when I feel sorry for myself and say why me, what did I do.

Through listening to Dr's, psychiatrists etc I have learned to treasure the days I feel good. Sometimes it can be a few weeks and then back comes the fibro and sends me to the dark.

Now...the times I feel good I enjoy life the best I can. I take holidays, I dance I live. I travel back home to the UK and if I am able I will hike the moors until I fall over or have to come back to the house and I have to fill myself with so many drugs I pass out. I may pay for what I have done But I will be damned if I will stop living.

I am sorry that you are hurting so much that you are judging people. We do not know that when people are out enjoying themselves that they do not go home and cry themselves to sleep. We don't know how much these people have and will go through. in their life.

I will never judge anyone who has a chronic illness for living.

Yes there are people out there that try to scam the system. Those people very seldom make it through without getting caught. Like I said I sat through 10 years of court cases.

Even back in the days when I was suicidal, I did not want to judge those who enjoyed life to the fullest, I hoped that one day I might have enough control and attitude to do the same.

Every day is a struggle for all of us with illness. If I do not wear Fentanyl patches I can't handle the pain enough to even get out of bed to go to the toilet. I travel with a huge amount of medication, letters for Dr's in case I need them and prescriptions in the form of letters for overseas Dr's.

I hope that everyone who has a chronic illness, dances when they can, travels when they can but more importantly live!
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Re: Fibromyalgia.Is it too easy?

Postby denys » Thu Nov 21, 2013 11:27 pm

I have had to go onto benefits after my employers decided they could share my job out amongst a number of colleagues and therefore didnt need me any more. I always worked hard, brought 4 children up and earned a degree in chemistry. I have been told I am unlikely to ever work again and have also had the comments 'oh so and so has that and holds down a full time job, all I can say is I wish.

I cant look after my grandchildren for my daughters, I cant get on the floor and play with them nor can I keep my once tidy clean house the way I once did :( :( :( :(

I understand what you are saying about your experiences, but we have to remember that fibro is an extremely difficult condition both to understand or to manage. It affects each of us differently and to different degrees, not everyone suffers with all the associated conditions and has all the problems that they bring.

I find it very sad that other fibro sufferers may be looking at me and thinking I am a fraud as the one thing I would love is to have my old life back. Its bad enough that we have to try to convince non sufferers without the need to convince each other.

Fibro_hell I know you arent saying all fibro sufferers on benefits are frauds but another of the problems we seem to have is that after years of fighting this condition some of us seem to develop a very thin skin so you will have to forgive us if we jump to the wrong conclusion
Denys

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Re: Fibromyalgia.Is it too easy?

Postby Fibro_hell » Thu Nov 21, 2013 11:53 pm

Thanks for the replys :)
But i still need to get across my point that i KNOW people i am talking about are faking.It is not a matter of people with Fibro having varying degrees of symptoms.I know this!
What i am on about it people who know you can fake Fibro and they have and do...
As in they heard about Fibro and decided to attempt to get diagnosed for the sole purpose of benefits.So when i talk about people going out and enjoying themselves doing things i could never ever do its not just because my case is quite severe.
So when i said "Has Fibro became the go to diagnosis for a quick and easy way to an easy life on Benefits? To me it sure seems so." I mean it.There are people faking and using it,it is NOT a matter of them having less severe symptoms and it is a FACT that they are abusing the system using FIbromyalgia as the scape goat.
I know 99.9% of people are genuine and suffer in varying ways but this 0.1% is giving us all a bad name and it annoys me,does it not annoy you?!

If someone can paste this on facebook that would be great :)
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