Newly diagnosed

[Oscarlola]

Hi all I've just joined today just been recently diagnosed with fibromyalgia been refused pip and Esa I've put an appeal in for both of them not holding out much luck but I've got to try I received 6 points for pip but no points for esa has anybody else been refused x

[neesey1005]

Hi I receive nothing - no points I have been diagnosed by the hospital and my doctor but because my walking has good/bad days and I don't use any aids to walk etc. And I can dress myself and cope quite well (except for one of my bad days ) -when I have overdone it or haven't packed well - I am unable to work because I can't sit too long can't walk too far and fatigue but their attitude is I have a working husband who can support me. X

[Hidden in reply to neesey1005]

That's awful Jersey,I tried two hours a week!and it destroyed me me ,I tried to hide it from my kids ,lol,of course they spotted me I'll in my bed wherever did I come up with the idea to hide it!!you can't hide fibro flares lol,I had to pack it in I miss it,and when people ask what happened to you oh don't you work anymore with my two walking sticks!?for real!it just bugs me.

[honeybug]

Welcome to the forum Oscarlola

😊🌸🌿🦋

Sorry you have FM but you’ve come to the right place for support and to talk about your journey with this disease.

You may even make some wonderful friends from the beautiful souls that meet here.

Best wishes and take care.

😊🌸🌿🦋🤗💗xxx

[Oscarlola in reply to honeybug]

Thankyou glad I've joined xx

[honeybug in reply to Oscarlola]

Me too 😊🤗💗😘

[neesey1005]

Yes tried to work - pain kicks in after a week!!! I worked in chlidcare - too much stress to much pain , tried cleaning and shop -, come to the conclusion fibromyalgia combined with my age constant work affects me big time - trying to hand wallpaper -managing two sheets a day otherwise the next day I am crippled up - I do lots at home but I do an hour sit an hour - it's the only way I don't get bed ridden x

[Oscarlola in reply to neesey1005]

That's what I do neesey at least we can rest when we want at home 😣

[YASMINTINA FMA UK Volunteer]

Hi there and welcome, il put a couple of links on here you might find helpful healthunlocked.com/fibromya.... healthunlocked.com/fibromya... Xx

[Oscarlola in reply to YASMINTINA]

Thankyou xx

[cutebird]

Hi, haven't written on here for a while. But saw your post on here (after I was doing a survey) I have been diagnosed for 14 years, but your problems with benefits seem quite familiar with me!! I have tried to claim for DLA, PIP in the past, but no luck there. I got ESA for one year back in 2011, but then was refused after that. I am now on Universal Credit, but it doesn't even cover my rent, so I have now got arrears!! I might try ESA again, and I'm waiting to see if I need to attend a medical for universal credit. Keep fighting and don't let them put you off, someone's got to get these benefits!! Take Care, Love Liz xxx

[Hidden in reply to cutebird]

That's awful,can citizens rights not do anything for you?

[glo100]

Hello there duc welcome to the group it's lovely on here there's always some one who can answer any questions you need to no. I was refused pip along time ago before I had fibro I suffered with really bad head pains in my head in and out of hospital but when I found out I'd got fibro real bad and had to give up work to I tried again cs I cdnt get to them they sent someone to me assess me and finally I got it just appeal duc keep trying I also get ESA to keep on to them you hv to how bad are you duc if you don't mind me saying. Take care glor xxx

[Oscarlola in reply to glo100]

I have bad days and good days I'm trying to not do to much as when I do i suffer for days , it's more across my kneckbans shoulders but my joints swell up aswell , and I'm tired a lot x

[Oscarlola]

I havnt worked for approx 2 half years i got finished from..my cleaning job with ill health as i was in pain with my back and pelvis I have been looking to see what kind of job I'm able to do i cant stand to long , sit to long and bending or heavy lifting , so it's hard I have bad days and good .

[Hidden in reply to Oscarlola]

Best of luck to you I had to give mines up to its not easy.

[Ragdollheidi in reply to Oscarlola]

Hi Oscarlola, yes, I have been refused as well for both pip and esa, I also have fibromyalgia since jan 2016. Now I just work round it the best I can. But I fell several times and used to freeze on the spot so that I had to phone for a cab. Then in jan 2017 I progressed on from using a walking stick to a rollator or walker, because of the falls. I am now seriously contemplating a mobility scooter and I am only 48. But the job centre can be ignorant and unhelpful and even ridicule people with fibromyalgia. I cannot even move around indoors safely. I always have to steady myself and hold onto something. This is my daily reality now. Ordinary people have been the most helpful, especially on buses and holding doors open etc. But then I live in the country, semi-rural, so people are a bit different up here from London where I grew up. And I go to classes and groups now, and play Rummikub again, (great fun!), and started baking again recently! I do what I can to try to make life a bit more enjoyable and to take my mind off the constant pain! At first the DWP really upset me, but now I don't think about them at all, they are not worth one second of my thoughts or feelings. Hope you sort yourself out.

[Oscarlola in reply to Ragdollheidi]

I'm so sorry to here what your going through and yes your right don't let them bother you I'm giving it a try and if I don't succeed well I'm not going to let it get me down i get sick of complaining im. Tired all the time 😣 so I try and keep going the best I can x x

[Hidden]

Yes I was treated badly ,not everyone has been but it seems majority. Welcome to the site though, just persevere with them and appeal every time.best of luck.

[releasethemagic]

The questions on the forms for PIP and ESA need to be answered in full knowledge of what they are looking for and how they score the things you cannot do or have difficulty with. For example if you can manage a task 4 days out of 7, you are classed as Fit. If it is less than half the time, you could score points.

Get hold of the various Guides on how to fill in the forms. See the links below and contact Janet the Fibromyalgia Action Benefits Advisor. Your local Citizens Advice Bureau can also help. If you decide the forms did not include enough information of the type they are looking for, you can include it in your MR or Appeal request, or you could decide to claim again, starting at the beginning again in a few months time.

benefitsandwork.co.uk/emplo...

advicenow.org.uk/guides/how...

pipinfo.net/

drive.google.com/file/d/0Bw...

[Oscarlola in reply to releasethemagic]

What will happen if I'm waiting for my appeal date and I'm just newly diagnosed with fibromyalgia after I put it in will I be able to phone them up I have told them already that I was having tests for fibro .

[releasethemagic in reply to Oscarlola]

I believe you would need to make a fresh application for PIP to introduce new conditions not diagnosed at the time of the PIP application, but your local Citizens Advice Bureau could advise you better than I can. ESA and PIP are supposed to be not about the medical condition though, It is about what you can and can't do in relation to their list of daily living activities and mobility. For PIP see this website - click on Activities and then on each activity for the full details

pipinfo.net/#activities

For ESA the list of activities and points scores can be found here

sense.org.uk/get-support/in...