Fibromyalgia Action UK

Is it just Merseyside that no one gets DLA,ESA,PIP

Hi all,

I have read over the last year of all the success story's. I myself is not one of them having been in pain for is over 20 years an always getting told its your weight so in 2008 i had a gastric bypass an is a success having lost over 15st and the pain still not getting any better. So after many visits to GPs one Doctor sent me to the pain clinic thats when i was told you have fibromyalgia on only that time he sent me to have scans and other test low an behold i have raynauds, osteopanina ,osteoporosis in both hips an spine l1 to l5 so lower back also in my neck . i started off on pain killers and anti depressants but since 2010 i have been on morphine as pain killer an other tablets i put on weight not good for the osteoporosis i have walking aids to help me keep up right other wise it will be a wheelchair and am not ready for that yet mentally. so GPs told me apply for DLA got turn down appealed got turn down appealed got turn down its just i am now 4 years of appeal's and my health has gone worse with very appeal that now i have to apply for pip so did this on the 19th july 2013 and still no doctor has been to see me they just send me appointments for a hospital 30 miles from my home most times am in to much pain to drive in bad weather like ice an snow i can't go out as if a fell i would break a hip or my spine so i have to think a head my husband works so ESA is out of the question i get no help at all under the old system i would have been given higher rate mobility and care now they think as am only 48 i have made it all up xrays can't lie nor can scans is it just Merseyside that is taking these new rules to the the letter that no one is to get any benefit i feel like am hitting a brick wall all the time i am at the end of my wits with it all and a very long and painful flare up has taken it toll on me only for my family an friends i would have ended my life i have gone from a happy go lucky woman who has worked to start a small cleaning business that i have now had to end as i can't do the cleaning of the end of tenancy's to a recluse i have no interest in my hobbies or going out with family or friends this is not a life any more

7 Replies

Hi there sounds so exhausting , im afraid I don't have a solution as such but im in the same boat and have just appealed and this then went on to the tribunal. Well that's where it changed I was late and my cab advocate asked for an adjournment this meant that I would get a home visit t see how I cope at home plus, and oh yes they would contact my doctor for my records why I say this is that your medical records are the foundation to your claim. Another lady I saw said her physio and specialists batted for her claim she's now higher rate I hope this helps you to understand its the medical help you need to secure a claim , maybe your doctor can hep too but it might cost for a letter from him well hope this is some help to you so good luck and don't give up ok xx


hi there, my GPs are fab i don't even have to pay for letters from them as they say i have a disability both GPs an Pain clinic have sent reports for all my tribunals and they have just ignored it i have LAD helping me in all my claims they are the best in liverpool as they only deal with disability claims and even they cant find out why i keep getting turn down Merseyside has taken these new rule way pass what is recommended i will not give up but some times its just to much


Hello Sylp65,

You can hear how frustrated you are in your post and I totally understand as the benefits system has caused many to feel this way hence all the recent articles in the press. Living with Fibromyalgia can be difficult and it sounds like you have experienced GP's who have been very dismissive in the past by saying the pain you are experiencing was due to your weight. This must have been hard when you know the pain you are feeling and trying to explain to others who seemed not to be listening.

Thank goodness you managed to get a diagnosis and were investigated further to find the other health issues. I hope I can provide some information that may help you and hopefully you will experience less stress which must be impacting on your physical & mental health.

FibroAction can provide you with some information about PIP which may be of help, if you email me Please see link below;

I wondered also whether you had seen our 'All about Fibro' series of factsheets which you can download & print. If you feel you need to speak to a health professional in the future about your pain and your medication for Fibro it may be helpful to take these with you to discuss treatments used for Fibro. Here is the link to the website should you wish to read the information;

I think you'll find many living with Fibro lose interest in things when feeling so poorly but as you start to feel better some of your interests may come back. It certainly happened this way with me anyway, I don't know about other members. I decided to try something new that needed concentration that distracted my mind, trying to learn the guitar was my choice as I have never been musical. Maybe when you feel a little better you could try something you can do at home which you've always thought you wouldn't be able to do!

Please know you can visit the community anytime and express your feelings as we are all here to listen and help if we can.

Sending you all the strength possible

Emma :)

FibroAction Administrator


hi, and thanks for the info I will email you as I do have some questions that you may be able to answer for me



Hi, it's not just Merseyside, I'm in hampshire & been refused twice. I have Fibro, raynauds & hyper mobility and now a brain aneurysm. Had to stop driving due to pain and blurred vision when stressed. Can only walk short distances with aid of stick, have to use mobility scooter rest of time.

I'm registered disabled with council and have blue badge, but according to DLA/PIP I'm not disabled enough. They've basically said that as I can get out of bed on my own, go to toilet on my own, then I don't need help! I did also read this DWP illness list: where it looks like some illnesses they have a set response for and approve you automatically, for others, like Fibro, they are simply referred to NHS website and their very basic and understated description of Fibro. They seem to go off of this list rather than all the info you send them.

I've done forms twice, had reference from pain clinic and help from citizens advice to complete form. But DLA/PIP haven't even given me an interview, assessment or anything.

I've given up fighting it for now, as it makes me so stressed and makes the fibro worsse. Instead ive been concentrating on managing the Fibro.

I hope you have better luck xxx


hi agtf1,

thank you for the info I did not know we could get this sort of info as I have osteoporosis and from what I was looking at I should be on indefinite award as for the Raynaud's the info is look at NHS website and for most of my other health problems I will send I copy of this to LAD who are helping me in my claim for pip thanks once again and I hope you will keep fighting for what we are all entitled to


You're welcome and hope it helps x


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