Pip claim

[Gemmaoxo]

Pip!

I’m about to start filling in a form for claiming pip for fibromyalgia . Anyone else claim it for fibromyalgia and how easy/hard was it to get the award?

Thanks.

[Greenpeace]

Hi there!

I’m a bit pushed for time, so I’m copying the reply I gave to another member a few days ago.

You can certainly apply for PIP as it is given on a points system., and not on a particular diagnosis.

These points are awarded by answering questions on how you manage to carrying out daily tasks like Personal Care, Mobility, Cooking Food etc. Even-if you can do these tasks, they have to be done safely, and within a reasonable time frame, and without causing too much pain.

I hope this helps, and I’m sure there will be other members who will

give you more information on their experiences of applying.

Good luck.

GP. 😊😊

[Hazel_Angelstar Administrator FMA UK Staff]

You might find it useful to z contact our benefits team on 0300 999 0055 (Mon, Wed, Fri 10.00-12.00) or email [e-mail]. They can email you guidelines on applying

Get help from cab, welfare rights officer etc to complete the forms if you can. Also helps to go through the PIP descriptors and make notes on what problems you have completing them.

[SlothMode]

Hiya Gemma,

Yes I found it easy to get awarded PIP for Fibromyalgia. If this is your first PIP it can be daunting but you just need to break down each section and think carefully of things you can and cannot do. My first claim was in 2012 and they did not understand what Fibro was and how it can affect people. However they are getting better at understanding it now. Check out the information on PIPs provided here and if you're still worried about it feel free to message 🤗😊

[Dizzytwo]

Hi there, the thing you have to bare in mind when claiming PIP is that it doesnt matter what illness you have but how it effects you on a day to day basis. Good luck.

[Chronicallyfab]

When I first applied they didn't understand what Fibro was. Things have improved a lot since then and each time I have done a reassessment it's been easier. Be prepared to get a little emotional when you first fill in the form, your meant to fill in as, if, you are on your worst day and it hit me quite hard when I realised just how bad a worst day could be. Something I didn't know for the assessment was, you can actually ask to have someone come to your home so, if, they offer an assessment that you feel is too far away for you or is likely to cause issues with your pain etc. ask them to come to you.

[SlothMode in reply to Chronicallyfab]

Awww Chronicallyfab I remember that day so well. I cried too. It made you literally have to think about everything you can't do. It was horrible. Big hugs. 🤗😊

[Cat00]

I've given up applying for PIP, got it taken away when they converted from the old system. Had to go to appeal the first time and that was hard enough, don't have the energy to through all that again.

[PassionFruit6 in reply to Cat00]

So sorry to hear this, didn’t know it could get better most people I’ve heard get worst. So sorry they misunderstood your needs . Hope you will have the right support and energy to try again in the future

[Cat00 in reply to PassionFruit6]

My condition didn't get better, the rules changed and they got rid of the lower rate which is what I was on. I've got conditions more dibiltating then fibro and still didn't get it.

[PassionFruit6 in reply to Cat00]

I was being sarcastic when I said it got better, I could tell from the tone of your writing things probably had not.

Maybe advocacy is what you need to get the right words and explanations on paper for what you’re experiencing

[Cat00 in reply to PassionFruit6]

Oh! To be honest one of the biggest problems I have is that my conditions are so variable, I've just come out of a bout of migraines where I was having them everyday for 6 weeks. This happens periodically, sometimes i can go for almost a week without a migraine, sometimes they're very severe other times not so much. Benefit system doesn't allow for this, plus I have charts going back over 10 years bc I have to keep daily tallies of migraine for neurology and they still turned me down. Also I'm actually quite an active person, I do a lot of exercise, I do it in pain obviously, but that rules me out of all the mobility things etc.

I admire people that fight the system bc the systems awlfull but I don't have the energy myself!

[PassionFruit6 in reply to Cat00]

Thank you I’ll bare that in mind

[Farmerboy in reply to Cat00]

When you say the old system do you mean DLA??

[Cat00 in reply to Farmerboy]

Yup

[Gm23]

I’ve just recently been awarded full amount for both as I have been really unwell the past two year between fibro and pcos. However on my report most of the points awarded were based on my fibro. When you have the meeting, answer the questions based on your worst day. Don’t focus on statistics as it’s about you and the condition, not the condition alone x

[PassionFruit6 in reply to Gm23]

The thing is my worst days I’m left alone to deal with it and their response was. If you live with people why don’t they help?

Which is not a short answer : neglect, self absorbency and lack of care for others.

They used this against me last time and I never know what’s right to say or not to say. The full context of why my “family” are like this is complicated and to summarise if I could live elsewhere I would but can’t.

I have a history of not being heard or understood when explaining vulnerable situations requesting help. So very triggering process

[SlothMode in reply to PassionFruit6]

Maybe you should just tell them the truth even though I know it hurts. Others don't understand as fibro is an invisible illness. They can't see the pain we are in. They also think we are being lazy when we can't do certain tasks. They don't always have the time to help out and sometimes they don't even think of our needs. They leave us to struggle and walk away. Will that do lol? I live with people and that was sort of my reply when asked at my assessment. 🤗😊

[Gm23 in reply to PassionFruit6]

It definitely is a triggering process, I get health related anxiety which is obviously around a lotConsidering I’m always unwell lol! But I just had to remind myself it was a one off time, and Prepared myself and allowed myself to feel deflated after it. I’m so sorry about your family, that must make things so much more difficult. X

[Gemmaoxo in reply to Gm23]

What were the reasons they awarded you that? What did u put down which u can’t do etc?x

[Gm23 in reply to Gemmaoxo]

I was just brutally honest, I found it so embarrassing but it had to be done. I spent the majority of last year in my bed and couldn’t do anything for myself, I couldn’t even shower myself most of the time because I was in so much pain so they took things like that into consideration. Basically tasks that keep you healthy and alive such as making food and eating etc, getting out and about and exercising x

[valerienesbitt91]

I have fibromyalgia I filled in my pip FromI had no problems with my claim just one thing list all your illness you have

[Farmerboy]

Good morning, PIP is not awarded on an illness or a diagnosis or disability. PIP is awarded on your inabilities to preform the PIP descriptors and activities safely and repeatedly and in a timely manner. Your first port of call for information is take a self test of the PIP application on the Benefits and Works site and see how you score. The test is free to do and asks the same questions that are on the PIP application form. Please be honest if you take the test as should you proceed with your application any information or evidence sent about your abilities or inabilities will be questioned and have to be justified at your eventual face to face assessment.

[BlueTofu]

HelloI am about to apply with the help of a charity worker. You use their language to reply to questions. In ESA it was repeating back 'I can't repeatedly and in safety in a timely fashion ... Use the worst possible day. I'm not hopeful, but.. I'm trying to take it personally or a reflection on me as a person. It's just a practical necessity to receive this financial benefit, having paid into the system for years. Good luck to both of us. Don't get be up if you're rejected at first, it happens a lot; but then it's awarded on appeal.

[Chloe_x]

Hi, I got awarded PIP a few days ago

I found filling out the form hard and I got an extension for that. Then the DWP moved my phone assessment - apparently it had to be 1.5months later if I wanted it recorded! Then, they missed that appointment anyway and told me I couldn't have it recorded. So I finally just had a non recorded assessment. It went OK but I wasn't feeling too great about it.

Then, suddenly... I got it. I got PIP one day after my assessment! Absolutely insane! So overall I found it difficult and it took ages - started in June, ended in late Jan - but I put a ton of effort and detail in and made sure I had evidence, and it worked out.

I'm hoping to make a YouTube video detailing my experiences with PIP, but because of my health I don't know when that'll happen.

Best of luck with your claim, and feel free to message me if you need help.

Chloe x

[Mojo54 in reply to Chloe_x]

Hi, could I ask you what rates you got awarded. Thanks

[Chloe_x in reply to Mojo54]

Hi, when I wrote the form I was aiming for lower rate daily living. But I ended up getting enhanced for both - so the full amount

[Gm23 in reply to Chloe_x]

I would be curious to see your YouTube video on this! I’v also been awarded both high rates but it seems to be very rare this happens. And I also like connecting with others going through similar situations. What’s your YouTube handle? X

[k77a in reply to Chloe_x]

That's great news.l would be interested in how you worded things, with fatigue brain fog affecting you, in daily life ? I'm in the process, of filling out the form now my second attempt at claiming it , first one was before my fibro diagnosis. X

[Chloe_x in reply to k77a]

I broke my claim down into pain, fatigue, and brain fog. They accepted pain and fatigue as symptoms, but their response about brain fog was as follows:

"Reported restrictions not supported: There is no evidence to support a cognitive impairment, as shown in HOC [History of Condition], brain fog considered as known symptom of fibromyalgia, however is not a global cognitive impairment, and has no indication of memory test clinic referrals, and SOH [Social and Occupational History] indicates attendance in university."

This was copied and pasted underneath every single one of my answers! So my best advice for brain fog is to make sure you have strong supporting medical evidence of it, particularly any "memory tests" (god knows what they are, I never got any because pain is by far my worst symptom. Given that they used university as evidence I don't have brain fog, I'd say you'd have a tricky time convincing them you have it if you have a job.

Sorry about how pessimistic that sounds, but I want everyone to succeed if they deserve it so I hope that this helps you make sure you're prepared. As for fatigue, I'll go and find an example where they supported it as a reason, and I'll type up what I said.

Oh, and if you can afford it financially, I'd absolutely recommend asking for additional time filling out the form. They let me have an extra month, which I think demonstrated to them how hard I find communicating - the only downside is that it extended the process.

[Chloe_x in reply to Chloe_x]

Gosh, what a long reply, sorry. This reply is huge as well and no worries about answering it if replies are tiring.

For fatigue I received this comment under most of my answers: "Recommendations and evidence used: Given the symptoms of pain and fatigue supported by the FE [Further Evidence] showing GP Letter supporting her reported diagnosis and symptoms ... [and] FH showing examples where she has functional power but not reliable management in time or repeatability on majority of days due to pain and fatigue, and MSE showing fatigue as call progressed, she would not be able to reliability prepare and cook a meal without assistance." -> so for the other answers they substituted in the topic replacing just that last phrase with, for example, "not be able to reliability get in or out of a bath or shower without assistance."

Interestingly, I didn't even notice that I was getting more tired on the phone, but there we go. Apparently you're allowed to ask for a rest if you need it, so that might be something to bear in mind for the phone call/assessment.

For preparing food I got the second highest score of "needs supervision to either prep or cook a simple meal". I described the fatigue element generally as "a significant aspect of my condition is post-exertional malaise, which involves the worsening of my fatigue and pain after minor physical or mental exertion. There are many things that cause this; if the activity is more physically exerting, my symptoms will flare up for longer. I'm not able to exercise at all".

Specifically for food prep I wrote "I grow fatigued easily, so I cannot cook complex meals. My meals are prepared for me ... Because of my fatigue, I cannot cook a meal as described every day; cooking a meal is not repeatable for every meal, or every day. When I cook I am in more pain the next day, so I tend to cook one meal - a small portion of pasta and ready-made sauce - every three days. ... Because I grow tired easily, I have rest breaks when I cook, which either involves lying down on the sofa or resting on a stool. Resting means that I'm not as tired as I would be; however, even when I rest, cooking still makes me more fatigued and increases my pain." -> I also gave specific details of things I can and cannot do, such as the fact I don't use an oven. To explain my energy levels I said "On days when I am able to prepare a meal once without help, the subsequent exhaustion and worsened pain mean I’m unable to prepare another meal that day, or the next day".

After the phone call, they wrote down "adaptations to cooker that is quicker, rely on others to cook, fatigued, small portions, resting in between." I suppose they got the gist of it.

I hope that gives you some insight as to how they drew their conclusions from what I said. If you have supporting medical evidence stating that you have fatigue, that'll be a godsend for sure! I also submitted a letter from a family member, and I emphasised fatigue in every single one of my answers (since it impacts my entire life, as I'm sure you relate to!), which just meant lots of copying and pasting.

Best of luck and if there's anything you want to talk through, you can message me on here anytime

[Gemmaoxo in reply to Chloe_x]

Thanks so much for your reply! It’s helped a lot. I am just waiting to see if they accept my telephone app. Hope they do as I really don’t think I would be able to stay awake for the face to face 😞

[Chloe_x in reply to Gemmaoxo]

Yay, I really hope you get it🤞🏼Same here - I did the phone call in bed, there's no way I'd have been cohesive enough if it had been in person!

[Gemmaoxo in reply to Chloe_x]

It’s just so hard isn’t it. The main thing I struggle with is getting people to just understand! Honestly if people understood how I feel my life would be so much easier 😞

[Chloe_x in reply to Gemmaoxo]

Yeah, I totally understand that, it can be frustrating and disheartening all in one - but I suppose that's why these sites are a blessing, otherwise we'd be all the more isolated

[Gemmaoxo in reply to Chloe_x]

Just had a call and my over the phone assessment has been accepted!!😍

[PenelopeClearwater in reply to Gemmaoxo]

Brilliant news! I’m waiting for my appeal. Apparently, because I was able to speak during my phone assessment (even though I was lying down the whole time and had my Dad helping me), they reckon I’m fine and can do everything I told them I struggle with… I just want to cry

[Gemmaoxo in reply to PenelopeClearwater]

Oh never! I think it’s so bad how they rate it! They can’t see how u are so for them to decline it because you were “fine” on the phone isn’t very good! Hope you win your appeal 😀

[k77a in reply to Gemmaoxo]

How do you request a telephones, appointment

[Gemmaoxo in reply to k77a]

I just said to them I struggle with sleep disorder and worry about falling asleep. And that that it’s easier as I have children to x

[k77a in reply to Chloe_x]

Thank you , for your lengthy reply .The fatigue & pain are most debilitating , for me as amplified by another condition fibroids .l have .I have also requested , an extention & the fact l don't know how long it will take.Im on another benefit , due to my inconsistency to be employed as a result of my symptoms. I've just forgot , a ladies name that l have met several times.And this has happened in social settings, resulting in people becoming offended, by me .l have mild dissasostion too, which is documented, but wording everything, takes so long then forgetting what l have wrote & repeating the same thing 🤔.Or overtaking medication.The lady on the phone,was lovely from DWP. I have family members & strangers notice it, which means it is noticeable .Anyway thanks again,for taking the time , out of your day , to help .Best wishes to you 🌺