Fibromyalgia Action UK
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So heres the thing!!! Ive had fibromyalgia for approx 6ish yrs now and since being diagnosed ive managed it quiet well; flare ups were minimal and i contained them with co codamol, pressure bandages and gel rubs. They caused minor distruption to my life and seemed to pass quickly; in fact I trully questioned the validity of fibromyalgia and thought it was a cop out for lazy hypochondriacs. Then over time the reality of fibro kicked in!! I began suffering from a weird collection of symptoms the main ones being pain pain and o yes pain a lack of quality sleep, coupled with periods of chronic anxiety, a combination of food intolerances leading to allergies so severe im now diagnosed with anaphalaxis and Im required to take allergy tablets daily and carry a life saving injection of adrenaline to stop me from dieing from anaphaletic shock. Despite these medical conditions I strove to maintain a normal life I continued to work, with minor alterations, i.e. reduced working hours from fulltime (approx 37-40) to part-time(20) and still managed to see friends though less frequently and for gentler social activies like meals outs instead of nightclubbing and nites in girly gossiping with a wee cup of tea instead of a few glasses of wine.

Unfortunetly my ability to manage fibro has deteriorated over the past few yrs; in particular the last 18 months, I am seeing my Gp more frequently beginning to question her knowledge in relation to treatments for fibro and my abiility to cope without a proper treatment plan including taking stronger pain meds :-(((

I have had to give up zumba and salsa as i can no longer walk, never mind dance, without pain. Im permently exhausted, constantly fighting of feelings of depression and if im honest from time to time a desire to stop the pain permantly!!! I have recently been signed off work for 8 weeks due to another flare up although i pushed myself back to work after 3 weeks as financially i just couldnt afford to be off that long

I finally gave in and applied for Dla around may/june 2012 although i hope to continue working. I seen this benefit as a way of paying for expensive complimentary medical treatments & aids (massage treatments, pain relieving gel rubs, pressure bandages, braces shoe insoles etc etc etc which I hoped would benefit my health and help me maintain a career that i worked long and hard to achieve.

Today i got a letter stating that my claim was unsucessful apparently i dont meet the criteria for either care or mobility - try telling that to my children who cook clean wash & dress me when im having a flaire up and am unable to walk from my bed to the bathroom unaided a distance of a few yards

Neway im gonna appeal this mad, unfair and unjust decision nd would appriciate any advice tips and support.

P.s. just talking about it helps :-) im sooo gonna fite this!!!!

16 Replies

Hello. Yes appeal and dont give in to them, thats what they want you to do. You are struggling with your care and with walking so go for it. I`m like you they just turn me down everytime but I`m not giving into then. I walk very short distances with my crutch, in constant pain and discomfort also having problems with my breathing, still they turn me down. Got an appointment with my MP on Thursday so I will be speaking for all of us on how unfair this system is. The stress its putting people through! I will update everyone on what he says when I get back. Try and keep ya chin up. You have lots of friends on this sight that understand just what your going through x Ann


Thanx ann and i hope ur visit to your mp is both productive and successful. Im kinda spitting mad at the minute and im hoping to channel the emotion into positive outward action as all fibromites kno destructive emotion and stress turned inward only makes are pains and aches a million times worse :-) thanx again for taking the time and energy to reply its much appriciated x


Hello Dixiesdaughter, sorry to hear about your unsuccessful claim. Don't give up hope, there are still things you can do to keep fighting this. If you intend to appeal, as you say, there is some info on the following link. Hope it helps.

Also if you look in our Tags section, there is more info on DLA and appealing there too.

Best of luck, I hope it all works out for you. :) :)


Please dont give up, its a bit like ESA, they refuse everyone on application so its a matter of convincing a tribunal that you are really in need of this benefit. Although I only managed to get lower rate care out of my appeal at least it wasn't a waste of time and that money does help with everyday living costs. Good luck and keep up the fight x


Thank you all kindly for your support advice and info. Will def be fighting this decision and will forearm myself with the knowledge u have provided to assist me :-) il keep ya posted - though il will prob be some time b4 ya hear anything cuz the benefit process as a whole is so flippin slow :-)


Oh, how I remember those days. I got my diagnosis for Fibro roughly ten years ago, as I had other more 'pressing' health worries I filed it away as what little info I was given it seemed no big thing.

It took a few years but boy, how my opinion of Fibro has changed, as I began to get more and more of the nastier symptoms more severely I had to 'think again' about how I approached living with this nasty little life snatcher.


Nasty little life snatcher - sums it up so adeptly :-)


I've given this answer to 2 ESA questions, it will give the answers you need, also send drs letter based on page at back - you fill it in and it gives your dr all info he'll be asked for.

I was put in the back to work group for ESA and lost my DLA. I joined at this site -

and got my dla back due to the advice here. I can now concentrate on the esa appeal info. it costs £20 to join but is invaluable. the CAB will help. good luck.

regards, sandra99b



Appeal you must. Make an appoitment with your local CAB & they will fill thr form in forbyou for a small donation.

If you live anywhere near me & need company I would go with you.

Luv & Hugs

Jackie xx


Thanx to both sandra & jackie for your advice & support :-) this was my first time applying even though ive had this condition for 7 yrs. untill now (past 2yrs) ive managed to maintain both my personal and working life with a few minor changes unfortunetly as time goes on and fibro gets a better hold on me my limitations are becoming more obvious- but obviously not to the DLA bigwigs. Since joining this site I amazed at the numbers of people who are treated with skepicism and a lack of regard and respect. Its galling that the majority of us worked b4 out diagnoses (and most of us want to continue working or would give are eyes teeth to at least have the luxery of choice) paid tax and national insurance and are now beging treated as spongers for claiming monies which in reality are rightfully ours and which we would gladly give back in lieu of regaining our health and our lives. Something needs to be done to make these burocratic halfwits wake up to the reality of what its like living with a hidden, dehabilitating, health condition!!!!!!

And breath.......... Lol sorry got a bit carried away there :-)


hi, i can sympathize with you - i received my letter back from DLA yesterday and they have also refused me on both - i will fight it however i do not know where to start



Hi belinda,

Please fight on, appeal and don't despair, there is help on here and out there. Been through it and won on appeal (have put various posts on here)

I was so muddled up by it all, on top of having as we all do medical problems, so i went to see Citizens Advice, they were really good and helped a lot.

Was rather alarmed though when the lady i saw ONLY did appeals, must say something about the whole shambolic episode.

she knew how to word things, and as she had soo much experience put my mind at rest a bit as i did feel victimised by the system

"oh it's not just you, everyone is in the same boat" she said

Chin up and crack on

Take care

Jan xxx


Hi Bbstport

Glad to hear your gonna fite bk. me 2 :-) got some good advice on here look at sandra99b reply above she sent me a wee link to a site which looks like its gonna be really helpful.

Cheers karen x


Hello All,

I too got turned down for DLA, 3rd time too, but this time seeing as i walk with 2 Fischer sticks on a good day, feel I should be entitled to it. My husband is my unpaid carer and does everything for me including helping me get dressed/undressed,cook, clean etc. Its a totally unfair system, that WE have to prove we are ill. The stress for appealing is huge and certainly doesn't help the condition.

I've seen Prof Davies at Guys Hospital in London last week, and within 15 mins confirmed Fibromyalgia. No cure, but just keep taking the medication. End of.

not nice and not fair, so the least we should have is the extra money to help make our lives a bit more comfortable such as taxis, when we just cannot stand anylonger at a bus stop. Better quality food instead of cheap versions, and medications. Unfair - Unfair - Unfair.

I am appealing and will go all the way to a tribunial. I'm waiting now for a date to be seen and heard. I hope these people who tick the box, NO can sleep easier than me at night, Just one day in my shoes and then they would know how it feels to suffer FMS.


Hi Dixiesdaughter,

appeal appeal appeal, "you've got nothing to lose and all to gain" is the best way too look at it as you grit your teeth.

I went for a medical in June 2010, refused, appealed and won in July 2011 (won't bore you as i've written previous posts on here venting my spleen)

Was again sent for a medical in May, was so ill when i got there they sent me home by taxi. As per posts on here, WIN WIN WIN, i got a letter with my new benefit on so no appeal.

Was sooo convinced i would get a "nil points" letter i was well prepared after last time to appeal and almost booked appt with Citizens Advice in advance.

Might be worth contacting them if you're stuck as i found them great, ALL the lady i saw did was appeals, so must say something about the whole shambolic episode!!

Every appeal fought and won is 2 fingers up to the "system"

Good luck and keep us posted

Take care

Jan h xxx


Thanx jan im still in fight mode so am def gonna appeal. Its an absolute disgrace how people with real medical needs are treated by this shambolic system which has no hesitency in funding thus feeding the addictions of alcoholics but make people like us jump (as if we could) through hoops to prove our illness. Not to cast aspersions on alcoholics as I realise this is a real illness with devasating side effects, but I fully believe we deserve a parity of esteem. X rant over lol


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