Fibromyalgia Action UK

Worried regards to PIP

Hi everyone, I am new here, yet thought I would write my first post as I am loosing sleep over it.

I was diagnosed with fibromyalgia some 10yrs ago, I have hypermobility in both ankles. Poor memory. Ileostomy. And was told last week that I have chronic fibromyalgia , hence why I am now on MST, and oramorph in the day if needed. Amongst other medications. Ok so have been on higher rate DLA, and lower rate care component. .

Next Thursday I have someone coming to my home for a face to face with regards to the PIP. And Friday a face to face with regards to the ESA I think.

All I am reading on the Internet is how sufferers of fibromyalgia are being declined , and there DLA being stopped. I can't walk unless I have my crutches , and hubby does things for me. However I am stubborn aswell. I have pool therapy 3 times a week as its non weight. Bearing . Can anyone please give me some advice as all I keep thinking now is....they are going to say I am fit for work with my memory, and I don't know how I feel from one day to another, I would be a liability .

Sorry for the winge, but am very scared now. Xx

8 Replies

Hi Cariad-65 , Welcome to our lovely forum.I hope you enjoy it as I do.Im from the US so can't help on this but someone will be by soon, I'm sure . Peck.🐤


Hi Carl & welcome to the site, I'm sure you will love it as we all do & it's great to talk to others that really do understand ☺

I can't really help on what you are asking but the site has a brilliant benefits Adviser Janet, who will be able to answer you. I will get link for you in a moment.

Luv Jan x


Thankyou Janet . Look forward to receiving it. Xx


Hi Cariad-65,

Not to interfere Janet28 , just to let you know all the information can be found on the community forum under the FAQ section here;

Hope this helps

Emma :)


Hi Cariad-65 welcome to this site. I wish you had more time before your assessments. I think Janet28 must have been called away so will try and help. If you look on the right hand side of your screen and if you have a tablet you might need to turn it round so you have the long side eg landscape to see it. Look under Pinned posts you might have to click to see all of them. You will see FMAKU's Own Benefit Advisor and if you click on that it will give you details and also a link so you can email her if you want to.

Try and have someone with you both times so they open the door and do everything. The worse you look appearance wise the better so don't wash your hair, dress nicely etc. I can see the part that is worrying you most is that if you were forced to work is the memory aspect. You therefore might be asked whether you deal with your own post, pay the bills, make phone calls etc so be prepared for this.

If there are any specific questions please ask us as there is usually someone who have had experience on something you are asking about. Good luck with everything.x


Hi not all fibromyalgia sufferer's get declined I got pip in June this year you need to be truthful with them they are not asking how you are as such they want to no how much you can do on your own and what you can't do have all your paperwork to hand ie hospital appointments physio mri and scan appointments also list of medication, have someone there with you for assistance and moral support remember they do not make decisions so as I said be as honest and truthful as you can good luck let us no how you get on Carol ☺


Hi Cariad-65

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you below an excerpt and a link to the *CAB - Citizens Advice Bureau cache entitled: ''Preparing for your PIP assessment,'' which is very useful as it advises you ''what to say and do'' and ''what not to say and do.''

*Talking about how your condition affects you:

*You should be prepared to talk about how your condition affects you even if you’ve already detailed it on your PIP claim form. It can be hard to do this but it will really help if you can talk about:

the kind of things you have difficulty with, or can’t do at all - for example, walking up steps without help or remembering to go to appointments

how your condition affects you from day to day

what a bad day is like for you - for example, ‘On a bad day, I can’t walk at all because my injured leg hurts so much’ or ‘On a bad day, I’m so depressed I can’t concentrate on anything’

It’s a good idea to take a copy of your PIP claim form with you. That way you can refer to it in the assessment and make sure you tell the assessor everything you want them to know about your condition.

*Observations on what you say and do during the assessment:

*The assessor will use the information you gave on your PIP claim form but also draw opinions from what you say and do on the day. For example, they might ask you how you got to the assessment centre. If you say you came on the bus, they’ll make a note that you can travel alone on public transport.

You might also be asked to carry out some physical tasks during the assessment. Don’t feel you have to do things in the assessment that you wouldn’t normally be able to do. If you do them on assessment day, the assessor may think you can always do them. If you’re not comfortable with something - say so.

*Citizens Advice Bureau - Preparing for your PIP assessment:

I want to genuinely and sincerely wish you all the best of luck with your PIP assessment, and please take care of yourself.

All my hopes and dreams for you


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hi cariad 65 like you i was so stresed about my home assesment for pip the lady arrived on time she showed me her id she had a laptop with her now first have someone with you to take notes or record the assesment i wore my pyjamas and dressing gown and slippers i was in my wheelchair dont bother to much about your apperance dont go to the hairdressers dont fuss with your home i had a copy of the form i had sent in i had help to fill the form in like you i have fibromyalgia i dont get much sleep and i have dificulty walking i have perifual neuropathy in my feet .my memory is bad i cant have a conversation as i forget what i was saying i forget peoples names i to have asthma its worse with stress just answer there questions if your memory fails you they understand they do examine you you will have to do what you feel comforrtable with dont try and walk i cant do things in the kitchin arthritus i cant plan a route i dont drive i have help with dressing and bathing ,and i just found out i was awarded high mobility and care as for the esa do you have a wheelchair if not borrow one or hire one for the day please let us know how it went i will be thinking of you your illnesses are real good luck xxx

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