Whether to PIP or not to PIP - Fibromyalgia Acti...

Fibromyalgia Action UK

51,153 members61,619 posts

Whether to PIP or not to PIP


I applied for PIP about 4 years ago and was turned down. My fibro has got worse since then and I am just getting over the shock of finding out I have DVT and 2 pulmonary emboli. I have started treatment now with blood thinner and things are improving. I have also developed vasculitis.

At the moment I get no money, I am not eligible for any benefits even though I can’t work as my husband earns too much. But we still have a large mortgage and all the accompanying bills and are having too dip into my husbands pension pot to keep afloat.

I feel I should be getting PIP but am worried about getting refused again.

Any advice please

35 Replies

Hi do you fit the age criteria 16 to 64

mandarin in reply to Ajay575

Yes and am unable to work. Applied before and was turned down. From what I could work out as I was able to feed myself and wipe my own backside I did not qualify.

I struggle with everything now and would try and get some help around the house if I could afford it.

Ajay575 in reply to mandarin

Was not sure about 60 now or when you joined ha ha .i would just phone them this week and apply they can only say no.really go for it and do your homework with forms I would consider joining benefits for work or seek advice from cab or that .your diagnosis do put on forms after that instead use the words SEVERE AND WIDESPREAD PAIN A LOT AND THE WORD LONG TERM they tend not to go on diagnosis a lot and instead wot you cannot do and the help and care you need etc .benefits for work explains this.in meantime I would recommend you you try the pip self test and google pip self test and benefit for work will pop up and try that it is dwp facts and points and wot your entitled to and if you think you should get really go for it but go for it anyway .try the test 5 times to let you know how system works and the points.and chop and change answers to suit if your no sure once you got the right answers that suits you and true you can get it emailed to you .

mandarin in reply to Ajay575

Thanks very much some great advice there. Will try again. Went to cab last time and they helped me fill the form in but then forgot to submit it and missed the deadline. Will try it myself this time.

Ajay575 in reply to mandarin

Just take your time and when filling in forms fill in as if your worse day of year .do try the self test it will give you better idea and understanding .good luck

mandarin in reply to Ajay575

Thanks for all the tips. Will swot up before I go for it proper. Watch this space.

Jenonnet in reply to mandarin

Definitely apply again, think of the worst you are when you get a really bad flare up and answer the questions bagging them on your very worst flare up. Use words like chronic illness, widespread pain, incurable illness and lots of things you are unable to do. Always think of how you are in the worst scenario and tell them all the things you can't do.

They need to know what you are like at your worst. I know you may not be like that very often but when you do get a really bad flare up you are like that and can't do things, so you need to be assessed by this situation.

If you get refused, appeal. Lots of applications are turned down first time and given in appeal, so don't be put off if you get refused to begin with.

Good luck. 🍀

Rose54 in reply to mandarin


PIP is not for getting help around the house

Unless you need help with personal care .washing .dressing ,eating ,preparing a meal

If I where you I would keep a diary for a week and see what sort of things you find difficult .

Gather as much evidence as you can and then if you feel you meet the criteria

go for it

mandarin in reply to Rose54

I wasn’t aware that there was a restriction on what you could use the money for. I am unable to go shopping or do anything on my own so rely on my husband and kids for everything. To be able to take some of that burden off of them would be great.

Rose54 in reply to mandarin


Once you are awarded it you can spend it on what you like

just be sure your replies to each question are relevant as this is what your awared will be based on .

citizensadvice.org.uk type PIP in their search

Also make sure all your answers state when thay ask how many days a week you need this help you put 4 or more days a week .

Take your time completing form

Helps if you have someone like Support Worker or medical professional that can complete section where it asks for any other information

mandarin in reply to Rose54

Thanks. I’m ok on the medical stuff as I am a former nurse. I had CAN help last time but to be honest I wouldn’t go there again. Thanks for the advice

mandarin in reply to mandarin

That should say CAB

Mydexter in reply to Rose54

Yes and I think they are cutting back on claims , only people in need of personal care as you say, good luck

waylay in reply to Mydexter

Nope, not at all true. PIP is awarded based on how your disabilities affect your function. So say you're me. I have chronic pain w/ mobility problems, and complex mental health problems.

The 1st question is about preparing and cooking a simple meal for one. I can't do this, be side I usually can't stand while bending over slightly (to cut up veggies, or stir a pot, for more than 5 to 10 minutes. I then have to restore 5 or 10 minutes, which isn't going to work if I have things on the hob. Sitting isn't good either. Even if I do manage to cook one meal, that much standing is very likely to trigger a back spasm, which usually lasts 5 hrs to a day (but can be a few minutes to 9 days). Back spasms are extremely painful, spread down my butt, hip, and thigh, and severely limit my mobility. I usually have to take a bunch of tramadol and often Diazepam (sometimes oral morphine) and lie down on a heatpack, stretch very gently occasionally, and wait. I often pass out for many hours due to the meds. For this reason I'm unable to cook a meal as often as necessary on at least 50% of days.

In addition, my depression and anxiety, which are extremely variable, often leave me without any motivation to eat, never mind cook. I get so anxious that I become certain I'll burn or cut myself because I'm always a bit out of it due to meds. I also become extremely anxious about interacting with people. I have 5 housemates, so when I get like this I only leave my room to use the loo, and I wait to do so until I can't hear anyone moving around in the house.

I'd give a couple of examples here, and state any aidsI use, and why I can't use other aids.

Make sense?

waylay in reply to Rose54

PIP is for any extra costs you have due to your disabilities. If she needs help around the house because she can't do things, that's fine. Besides, they don't ask what you're going to spend it on.

Rose54 in reply to waylay

Yes I agree and did say once awared can be spent on anything

However completing the form and at assessment need to ensure you stick to criteria .

For instance needing help to do housework does not score any points

waylay in reply to Rose54

Ah, yes!

This is a good guide about claiming PIP.


The Benefits and Work Guides are even better but you will have to pay to join them


Thanks. Might be worth it so will have a look.

Mdaisy in reply to mandarin

You're right they are great guides releasethemagic , however I would strongly urge any member including yourself that before joining Benefits & Work and paying the fee to contact the FMA UK Benefits Advisor. All the contact information you need is in the link below;


Wishing you well with your claim if you decide to go ahead

Emma :)

Benefitsandwork is fantastic. I wish I'd had those guides when I first applied. Using them for my appeal.

Make sure you send in your medical evidence. The forms make you think that they'll contact your GP/consultant/etc., but they rarely do this. You need evidence that states your diagnoses and meds and treatments, but more importantly, you need evidence that supports your function problems. If you have a physio, they might be able to say things like, "She can't walk further than 50m at a time. She also has a great deal of trouble standing, sitting, and walking". Your GP may not know how your daily function is, and they may charge. Benefitsandwork have a little package you can give to a doctor to tell them what kind of things you need them to write. Obviously if they don't know they won't write anything, but they're more likely to phrase things in the way the DWP wants if you explain it/give them the forms. If you have had an Occupational Therapy assessmemt, that's very useful! You can also get husband, friends, etc. to write supporting letters, as they see your daily function problems more.

They are turning people down at a very high rate, often by giving them 0 points. This is meant to convince the claimant that they'll never get it, so they give up. Don't! They do this to so many people! It sounds like you should definitely get some PIP.

After the assessmemt, request the assessor's report. They're often full of errors. You can point out those errors and argue why you should have gotten more points for each activity when you apply for Mandatory Reconsideration. MR only overturns about 20% of decisions (it seems to be a target), so don't get psyched out if they turn you down.

Once you've done the MR, you can apply for a tribunal appeal. These are independent of the DWP, and right now claimants are winning 71% of them! The tribunal judges are well aware of how bad the system is. It will take a while, though.

Um.... I think that's it....

if you need help then why not contact your local council and apply for help and directly payments

Ajay575 in reply to justmai

Good idea justmai .i Mandarin and the report they give you can be very good and helpfull for pip

I ve applied for pip 3 times now and still get refused. Its an absolute joke that they dont give it to the people who really need it like us. I have fibromyalgia, bursitis, plantar fasciitis, and meralgia, and have memory loss problems and cant work and still cant het it. I would just re apply hun and even tell a few porkies if u have to. Xxxx

Angel533 in reply to Janey1973

Appeal x

Mdaisy in reply to Janey1973

Hi Janey1973

I would say that you have do have options that may help. Firstly if you haven't yet spoken to the FMAUK Benefits Advisor this may be the first port of call as she can help you with many aspects of claiming PIP with a fluctuating condition. All the information you need can be found in the post below, please click link to read;


Within the post above, we provide links to websites that may also be helpful when claiming. Many members have cited Fightback4Justice as helping with legal issues surrounding PIP and apparently it does entail a fee but less that an ordinary Solicitor would be. Apparently they are all trained and have experience in these cases, but as you understand I am not recommending them either personally or on behalf of FMAUK as we cannot be responsible for third party websites as per guidelines. However, it might be worth making contact if you desperately need help and you feel the benefits outweigh the cost. Other members may be along in a bit and can private message you about this service.

I hope this helps

Emma :)

waylay in reply to Janey1973

Do not lie! If they ever find out you'll be charged with fraud!

Morning. I would definitely apply for it. If you get nothing at the moment then you have nothing to loose. Do your research on how to fill the forms in and get advise from cab. Make sure you concentrate on the things you cant do for yourself and things you need help with. Good luck xxx

You should definitely apply again. If you subscribe to BENEFITS and WORK they’ll give you a step by step guide . Do a bit of the form every night for a week studying advice and explaining your difficulties. If they refuse you again then ask for an appeal either by personally attending or in writing. I was turned down 6 years ago but applied successfully last year. 😉

waylay in reply to Ellenlow18

Attending the appeal works far better than having a paper appeal.

Apply for it as u should get it don't let your last experience haunt you 💐💝x

Thanks peeps xxx

If you don't ask you'll never know. As your condition has worsened you might now be entitled. Good luck.

Apply for PIP be prepared to appeal. Definitely use guides from benefitsandwork.co.uk/personalindependentpayments I did for my husband and he was awarded PIP. The guides are worth the money. Always answer questions based on worse day's but be honest penalties not worth punishments if caught. Don't be afraid to tick not sure box etc. My husband got pip using benefitsandwork.co.uk guides he has fibromyalgia plus other illnesses and I've been on DLA since 2004 because of fibromyalgia plus other chronic conditions. Hope that helps, and that you are awarded PIP.

waylay in reply to ruthiepooh

You're supposed to answer the questions based on your average day, and if you vary a lot, tell them what good, bad and average days are like, and how often you have them (i.e. bad days 30% of time).

Do not answer based on your worst days. If you happen to be having a good day on the assessment day, they'll look at you and your form, see the big difference, and decide you're lying.

You may also like...