Fibromyalgia Action UK
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Pip declined mobility !

Dear All, I had my pip assessment 5th feb and just received letter today. Awarded standard care but declined mobility, I was given 4 points. My mobility is the one thing that has been affected so so much, this time last year I was still going to insanity classes, I now can not even stand for a second or walk anywhere without suffering extreme pain. I take codeine 60 mg 4 times a day, paracetamols every 4 hours, just been prescribed gabapentin ( only because I asked for it following reading about it on here) ( 100mg 3 times a day and increasing dose next week) as well as vit d, magnesium, amitriptyline, sertaline, omprezole, I think that's it and I am waiting to see pain specialist April 15th. I go to work full time, all I can do is sit all day and I cry with the pain when I get home. I can't drive any more and I was diagnosed with fibromyalgia in dec 14 after originally being told after I had been in September to the rheumatologist that I had RA, I was told in a letter to my GP that when I went in dec they were going to prescribe disease modifying drugs she did a complete u turn and said you have fibro here is a leaflet, have a stress free life and discharged me. I feel so sad and let down by everything and everyone. My life has been a struggle and this now also seems another battle, I just want someone to listen to me and help, I can't stand this pain. I rang straight up and said I want a reconsideration the woman on the phone was rude, said why? I explained , she said well if you do that you may lose what you have just been awarded. ! How? Nothing has changed ? I said I have worked 26 years full time, bought two children up on my own and I am not trying to con the system I am just trying to claim to try and help me , I don't think I'm going to be able to work much longer and I'm really depressed about the whole thing. I have worked so hard all my life, I don't have anything, just the knowledge I have bought two daughters up to the best of my ability , survived domestic abuse, physical and mentally . This condition is terrible my heart goes out to everyone. I have put on weight feel dreadful and really lonely. Has anyone any advice ? I am going to ask my GP for some help by writing a letter explaining how much pain I'm suffering and I honestly just can't walk anywhere without suffering so much pain. I don't leave the house other than going to work. Greatful to any help or advice.... Take care everyone, sorry for going on and many thanks in advance xxxxx

21 Replies

I just had to reply

Please know I understand how you feel working everyday

I use to and cry most of way home that was before I had Fibro

It's so terrible that they can't see how hard you trying and the pain your in

I'm scared to apply for pip as are so many as they don't seem to care about pain relating to mobility or pain in general

Please fight this contact local welfare rights you deserve this benefit

I want you to know I'm thinking of you and hope they see sense gp letter is very good start

You take care good luck lovev

I'm praying for you

Lots of love Squeák xxx


Hi Squeak, thank you so much! Yes I will fight it, and suffering in pain is bad enough without people pre judging me on the other end of the phone. I didn't help myself by getting a taxi dropping me off at the door, walking into the pip office on my own, they marked me down for going alone. I had family offer to go with me but I am independent only 43 and can't imagine my life having to rely 100% on others, it's bad enough having a car sat on my drive and having to pay for taxis and relying on others. Everyone should apply that is suffering, it's supposed to make us independent! I feel that I just couldn't win, other people had said ring and cancel the appointment on the day, say your not well, they will give up asking. I thought what a waste of government money and everyone's time no wonder it's taking them so long with backlog if people keep canceling just so it looks like they are not well enough. I really dragged myself there that day, only got out of bed to go and came straight back to bed. The same person that told me this "taxi driver" ( not registered) gets enhanced mobility and driving a brand new car with nothing wrong with them! It's so unfair to us all.

Hope to speak again soon, thank you for listening. Take care xxxx Tracey xx


Tracey I do get what you saying I'm 43 now I was a senior ward sister and I'm now having to have carers at home and walk with a stick and maybe a week a year im v good and I despite the pain can pretend I look well we all do it . And I can't tell you how long it's taken me to Accept I need help don't worry I have lots of things wrong not only fibro! But I still can't unpack my work bag it still waiting like just in case I can do a shift ! I would laugh but I would end up crying I have been ill since 2003 and finished work in 2005 . I hope you fight fight and fight some more I never appealed my DLA and I so wish I had but just Felt to ill at the time as stress always makes me worse and I was told if I did not attend it was unlikely I would be successful I felt like I should be grateful for what I got . I shared this with you not cause it all about me but so you know I truly do get how you feel .i think your inspirational still working and deserve enhanced rate no doubt . I'm sorry for going on but I feel for you and I hope and pray they will see the error they have made

Take care too

Love Squeák xxx


Hi Rosie

You have really been through the mill haven't you? Please don't feel alone - there are plenty of people on here who know what you are going through and can help givr you some advice and answer questions. I can't help with PIP related stuff myself but I just wanted to say that. :)

Have you tried other medications? My GP said codeine isn't useful for fibro pain so I take tramadol. Below is a link to my blog that talks about my medication joruney! I am still waiting for my pain clinic appointment in May but I hear it is really useful. You can also ask them to refer you to "graduated excercise program" which could be good as I really believe exercise can help. I know it sounds like absolute rubbish when you are in agony but stretching and walking really helps me (until youboverdo it).


Keep going - you are obviously a very strong women even though you dont feel like it at the moment. Maybe your children can help? I don't know how old they are but can they help around the house or just giving you some distractions on the phone a few times a week?

Sending lots of love x


Awww thank you so much, yes I genuinely really have been through the mill, even more happened along the life's journey that has all been awful, the only blessing I have is my two wonderful daughters grown up and moved out and a partner of only coming up two years but a wonderful kind and caring man. So I guess I am lucky to have been blessed with those three things. I can not remove my past ( although how I would love too) but I just have to make the most of my future, it looks like it's going to be sat down for most of it but surrounding myself with kind people like yourself and hopefully I can help others. Please know anyone at anytime I always have space in my heart and life to help in anyway I possibly can. Good night take care, catch up tomorrow xxx

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They even get you on that, if your children help. They put it in my 0 points from ESA in December, I am not back on ESA for a myriad of reasons and this time I will appeal. Like you say just going alone they get you. I have my two sons at home 20 and 22 and they said well at least they can cook for you or themselves and help you with shopping. Feel so intimidated all the time, pain is pain, do they think that we would rather not be healthy and without pain other than applying for benefits. How much more degraded do they want us to feel! All to do with government cut backs, wonder how they would feel to go through what we have to? Good luck! Keep strong.

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I'm very much the same. I have chronic pain and work full time, but struggling more and more and literally do nothing other than work cos it wipes me out. I spend evening s and weekends sleeping or recovering. So I don't know what to suggest but wants to follow the post to read other peoples' input! Xx

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hi rosie I was talking the citizens advice person the other day and she told me that it best to let them feel out the form for you ,I don't know if this would help you at all but you could give it a try .

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and p.s. i agree with Susie, or let DIAL fill it out.


Hi Rosie and welcome. Reading your post was like reading my story, although I am a bit further along the line. I too brought up my children on my own, all 3 of them, survived an abusive marriage, put myself through uni as a single parent working 2-3 jobs at a time just to keep us going. I was just at a point where I felt life was good when it all fell apart healthwise. My employment as a teacher was terminated in June 2014 as I was no longer medically fit to teach. Since then it has been a long round of medical appointments, including an 11 week pain clinic programme.

Like you my mobility is the worst affected and I cannot walk without a stick or a rollator, I had to change my car to an automatic as my hands are not strong enough to change gear, I need help to get dressed, to serve food, to clean the house ... You get the picture.

I applied for PIP in January of last year and was turned down, I got 7 points for personal care and 4 for mobility. I asked for mandatory reconsideration and got no where. My tribunal is on Friday and I have already been warned that the panel can remove points previously awarded. I have a few friends with health problems, all of them far more able than I am and they have been granted PIP for care and mobility. There is no rhyme or reason to how this is awarded.

Financially things are tough, going from a very good salary to £71.40 a week ESA is a shock to the system, and I only get that till March and then goodness knows what will happen. My partner is self employed and business is very slow. He had hoped to be able to retire shortly but now he can't as we simply can't afford it.

I'm sorry I can't be more help. What I would say is keep a diary of your pain levels and what activities you can and can't do and then write to your GP with a copy attached. Give it a few days to be read and taken in and then go and see him/her. I wrote to my GP early on as I was so fed up of being in pain and no reason given for it. I got a diagnosis and better meds but most of all, I got listened to. It was one of the best things I have done.

Good luck, Linda.

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Hi Linda, unfortunately I agree you seem to have been reading and writing the same book of life as me. What a wonderful person you are and I'm so sorry that your life like mine and many others is and has been so difficult. I feel blessed to have found so many, caring and helpful people. I am going to take your advice and make them notes, see my gp Monday and explain and ask her to help me. She has so far helped and listened to me and I will ask her to write me a letter supporting what I am telling her with regards to the pain and suffering I am feeling . I can't wait to get to see the pain specialist I know im probably hoping for a miracle but I just want a bit of relief, pain is exhausting and really gets you down. I hope some good times and fortunes are coming your way and I would love to stay in touch and see if I can help you or help each other. I am sorry I was slow to reply I had been to work, 8-5 and then my parents came for tea. I am exhausted now and I am struggling to keep my eyes open. So I will call it a night and look forward to catching up soon.

Take care best wishes xxx Tracey Xxx


Hi Rosie-ts

I am so sorry to read of your plight, and I just wanted to wish you all the best of luck. I sincerely hope that you achieve your mobility if you decide to go for it?

Good Luck



Hi Ken,

Thank you, following all these lovely supportive replies from such kind people, I have to pursue the reconsideration not just for me but for everyone else, hoping that someday they will listen to us genuine people and support us not make us feel like scrounges . I like many others will have paid in years of taxes and national insurance and I have never had a problem of my money being used to help support genuine people fallen on hard times or Ill health I just expected to be treated like a human being when I called. I am a sales and marketing manager and pride myself with a team of people that provide excellent customer care. What I recieved was rude, pre judged and an uncaring attitude. No doubt working with so many disloyal people can try your patience but everybody is different and have different circumstances, needs and requirements. This message needs to be heard and like I have always said to my staff and my children growing up " treat others as you wish and expect to be treat yourself" . This seems to be a really basic thing that is missing in society and certainly from my experience in the DWP . Take care everyone lets keep strong and positive. Xx


I can relate to your story as do many others- what I would like to say is- write to your MP. write to the government!- write again to your MP, keep doing it never let up, you ar enot complaining to DLA, so they cant stop your money , but to the government- write to Jeremy hunt- IDS is not human! IDS lives on his mother in laws orchard, what does he have to worry about...

these morons have no idea what it is like to be in so much pain and try to move and work.

I was pretty much crippled up going to work on two crutches years ago, you could hear the bones cracking in my spine, dla didn't want to know.

all these who make the rules have a decent wage- eat decent food and have no worries-

they roll out these barbaric rules which causes even more stress and those who do not qualify get it all.

please write to the mp and parliament. while everyone accepts the diabolical treatment with out complaining to government it will never change.

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I so feel for you - it was like reading about myself over the years although I am further down the journey. First of all I would recommend Benefits & Work website it has lots of tips and advice & it helped me enormously with my DLA claim. If you become a member you can get to see even more things to help you with appeals, tribunerals etc. I began by claiming for DLA about 2/3 yrs ago - they refused & I sent in an reconsideration letter going into more detail about my difficulties after searching For advice on the net. I was awarded low care only even though my needs were mobility like you. I then just soldiered on working etc with this, then last year applied for a worsening in circumstances & got refused. I do have other mobility issues - arthritis & menieres which affects my balance.

Another year on I was getting worse & suffered a breakdown after my ex's mum died who I was close to & my beloved dog died. I also care for my mum who is deaf, blind & incontinent so it all got too much. I took 6 months sick leave & never went back. I now work for myself helping others to enjoy art activities. I live alone with my son & have no money but I am a lot better in my head.

Lastly you must pursue your claim as I had to renew my DLA & got the help of a charity called disability EQuality NW (UK) & have now got low rate care & low rate mobility which is a little better I suppose, but it can open up other benefits for you

to claim.

Take care & I think that all of the lovely people on here help to make you feel stronger to carry on.



Thank you for such a supportive caring reply. I will take strength and determination from your advice and guidance. My heart goes out to you, what an awful and tough time you are having, I wish I could something to help. I am pleased you have found some way of helping yourself and in turn helping others. I truly am Greaful and I am so pleased I have stumbled across this site and such a lovely group of strong, motivational people. You take care and keep in touch. Thank you again xx Tracey xx


This sounds like pure hell. Some may not like what im going to say here. But I see it around me every day. How can they justify refusing a mobility portion to someone with your issues it really is beyond me. I work full time I have another disease so can't take amytrip or many pain killers so I pace & self manage. I like many have worked all my life and never had to claim. I don't call myself lucky it's just hard work & life. But as time has gone on what helps keeping me on the go & in employment is my car. I live where public transport is negligible no trains & a car keeps me employed. But as I get older & worse I can't drive a manual version so I've had to reinvest in an automatic. It's not new its 8 years old and has cost me on my budget an arm & a leg. Now I may be a bit thick here but I thought pip was to help us stay independent & working and being less of a burdon on the state. I am tired of seeing others with this mobility portion that are really coning the system. Just two examples here I'm sure there are many more. Very nice lady had mobility part for years, probably genuine case at the beginning. But lives abroad, came home to renew car last Nov. It's been on the drive opposite my house since then. Brand new, never used. Example 2. Sister gets awarded car other sister pays her £40 per week & uses it as her own very rarely takes claiming sister anywhere. Uses it for daily life & work as if it was hers. It is so annoying when genuine people can't get real help. Sorry it's so long rant over. Tx


Hiya, thank you for taking the time to talk to me, yes it has been awful for a long time and now I feel so poorly and always in so much pain, I know everyone here is the same and my heart goes out to everyone. I know how frustrating it is seeing and hearing of people around you claiming and receiving enhanced rates just because they know there way round the system, I was honest and I thought I had completed the form explaining I was unable to walk anywhere without being in agony and certainly couldn't even get out of bed without pain killers. I go to work then come home and sit with my heated blanket, heated cushion. I haven't been to the shops in months and order everything on line, I can't drive my car and spend all weekend also having to sit and rest. It's really lonely and difficult having to stay home and not join in on days out with my partner and his children or not being able to go and see my two daughters, or spend time just doing my grocery shopping just anything just basic things. I already suffered with long term depression this is not helping the situation. I was trying to come to terms with this is now my life and I am going to have to make adjustments and learn to live with it, but I feel a real set back and feel like I'm not believed now that they have declined my mobility, I was hoping I could use the money to get taxi to and from work instead of having to catch lifts and put people out their way. Instead I just look at my car out the window that I can't drive and the start of the early nights is just a reminder that I can't even take my little dog Rosie for a walk anymore. Sorry for complaining I know everyone is in the same position I just haven't come terms with it yet and yet another fight on my hands to try and get some extra help. I fully dee stand every point you raised and it would be good to keep in touch. Take care best wishes Tracey xx


Dear Rosie, I can strongly recommend It helped me enormously with my PIP application when I was being migrated from DLA (still waiting to hear from DWP). This service is run by ex-benefits advisers and lawyer who are on your side. They provide information packs, that warn you of all the loopholes & extensive advice on appeals & how to avoid all the pitfalls. There is also a forum where you can get one-to-one answers from an adviser, usually within 24 hours. There is a cost (£19 per year I think) but it was the best £19 I paid. They walked me through the whole process & I found it incredibly helpful, because at that time I was so stressed and wound up that I couldn't think straight. Their practical advice was absolutely priceless. Sorry to hear of your problems. I wish you all the best in your appeal - go take a look at their website. Like you I'm not very mobile, so it was helpful to communicate with someone who genuinely wanted to help me by just sitting at home at the computer. Good luck Rosie - there is help out there!


Hi, thank you so much for the advice, really appreciate you taking the time to help me. I will let you know how I get on. I hope you are ok. Xxx


Good luck! & yes let me know how you get on, B x


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