Has anyone claimed PIP for fibromyalgia and can share advice?

[Hei1234]

Has anyone got pip for fibromyalgia? I am really struggling and don’t know whether to put a claim in! Any advice would be great please!

I have fibro. Im not claiming but I just wanted to say its a flipping horrible illness when its bad, so hugs!. Get help and advice from a charity, dont try to do this on your own.

Hi jumping on this thread aswell, I have actually asked for the application after debating for some time. Been struggling for around 3 years bavk and forth to gp ect, diagnosed fibromyalgia about 4 months ago.
I have had to substantially reduce my working hours (luckily this is documented on a rheumatology report), have gone from being really active (easily 30k steps a day) a few years ago. To having to sit down while I am cooking and ironing.

I decided to apply because I just think the worse they can do is say no 🤷‍♀️, and the adaptations I have had to make to my life do cost more. I dont drive and wouldnt think twice if walking miles or getting public transport before, whereas now its uber as brain fog and pain are horrible some days. Grocery deliveries now (which doesnt really add to cost tbf), relying on other people way more than I like. Clothing.... I have somehow lost the ability to fasten a bra??? Like my shoulders just do not have the strength anymore.
My kids not having the mom they once had, I also have an autistic 13 year old in receipt of high rate care DLA. Luckily her needs are more monitoring and emotional needs, and the doesnt sleep 🤦‍♀️. So thankfully I don't need to do lifting or carrying.

So I would say go for it, the worst they can do is say no. Gather all evidence, i have 2 rheumatology reports, an orthopaedic report and have another appointment with them tomorrow. An MRI report, I am being honest on the pip form as I can do things like cook (on good days) as i have to for my kids. But the aftermath of doing the simple daily things cam leave me knackered for hours after.

Thank you both for your replies, yep I struggle constantly! I got diagnosed in October but my doctor is doing all my treatments so I have not got any other reports! My tablets have been upped quite a bit! Mine is the constant aches and fatigue. I only work 3 days and the rest I’m that worn out and am in bed! My doctor is supportive so said she’s happy for pip to contact her but I’m still not sure if that’s enough! I also have ibs with it and on heart meds for a high heart rate! 2 of my children are autistic and the brain fog is awful trying to remember different things.

I have fibro and get PIp, however it's not the only condition I claim for.

Have a read through the PIP descriptors and tot up how many points you would get. If it's less than 8 combined in the care section, and less than 8 in mobility, then it's not worth claiming. If you score yourself as an 8 or higher in either section, full in the forms. But get help doing it, the CAB filled in my last renewal.

https://www.benefitsandwork.co.uk/pip-test-form

Do you have anything from rheumatology? If there are any letters from them they should be on your nhs app.
My concern was because my daughter receives high rate care DLA and I receive carera for her if they will say no on that basis.
But I think when your a parent you push through dont you, so hoping the DWP understands that. Its a lengthy form, i called up and they have allowed me to fill it out online (which i find easier personally), can save and then come back to it.
Like I said nothing to lose really, if they say no its disappointing (although I would appeal). But more to gain if they say yes, I like working for my sanity which I have put on the form. Although I am down to 6-10 hours a week now. Luckily my boss has a chronic condition (POTS) do is so understanding, and she can see in my face when I am having a bad day.
So if I was you I would apply, ve finest but base answers on worst days. I have said on good days I have the fore thought to prep and get kuds dinner in the slow cooker. Bad days when I cant think and am in pain its a take away, or on the odd occasion my youngest daughter (11) is capable of using ait fryer and hob to sort herself and her sister food for example.

I know financial help wont make the pain, fatigue and brain fog go away. However it will take one less stress out of the occasion for the bad days when I need to use uber or order a take away. Help with buying bras like molke bras that I can actually get on 🤣 without the assistance of my daughters.

No I don’t have anything from rheumatology mainly because my doctor is dealing with it and has put me on medication, although I have been going back and fourth for years and got the diagnosis in October! I have changed from one type of meds then I started on 30mg of duloxetine not I’m on 120mg

Ooohhh I tried duloxetine and it made me so so poorly 🤦‍♀️ like really dizzy and sick. I am on amitriptyline.
I would scour your NHS app for everything to do with your diagnosis, print it off and send as supporting evidence.
Good luck, I am sending off my form the end of this week, apparently takes about 5 months for a decision though. If I remeber I will let you know if my claim is successful or not.

Amytriptyline did nothing for me 😞 yes please if you remember keep me updated x

Doesn't do much for me to be fair thats why we tried duloxetine, but the side effects were just intolerable for me.
Thank you @DoAWheelie for that link it is really helpful 😊

Hi ladies, solidarity to all, another fibromyalgia sufferer checking in.

I do claim pip for fibromyalgia ( also for anxiety and OCD) but the fibro is what has the biggest impact on my life. I’m 48 and I’ve been in pain since I was 27 with what I just thought was sciatica. It took years to get taken seriously and was eventually diagnosed in 2018 aged 40.

I found the process strange to be honest because I applied for the form several times and didn’t fill it in ( story of my life ) and next thing I got a text from the DWP saying that I was waiting for my telephone assessment. I had not filled in a form so was a bit confused over this.

fast forward to assessment and it was scheduled for 1 hour. I ended up being on the phone for 2 hours 4 minutes and had the most amazing assessor who really listened. Within a week i had a back payment in my bank and was awarded high rate for both. I was so pleased and the money has made a huge difference to my life.

I recently had a review and have been awarded until 2032. I found a great lady on YouTube who has fibromyalgia and literally her channel is about navigating the pip process. I will find her details and come back to the thread .

remember- pip is not about the diagnosis, it’s about how it impacts and affects your life.

lastly, both of my dc are autistic and I claim carers and had no issues at all. Sorry for long post!

You must write about how you are affected according to the descriptors posted above. They do not care, or take account of, anything but where you fall points wise within these descriptors.

Thank you both, my problem is I lack in evidence 😞 apart from the doctor I have no other medical profession behind me!

I hope that possibly with the medication and dose you are on, and if you explain well the effects the condition has on you, you may be successful.
Thats my hope for my form anyway, i am not saying I can't, I am saying the effort it takes and the pain and fatigue I feel after are immense.
That I have gone from being extremely active with my kids to needing another adult there if we go out to help supervise and partake in the activities I no longer can. Grocery shops delivered amd working hours rrduced as no longer able to manage my daughters care needs, alongside daily activities and my own self care.

That is me! My mum comes and does the cleaning as I can’t! I have a sleep everyday, the constant pain, me forgetting things all the time and when I do do things the amount of time it takes me is awful 😢

My dd has fibromyalgia and is on pip but it’s not the only condition she has she has other physical conditions as well as mental health.
She’s not on duloxetine or anything specific for the fibro as it will interfere with her other medications.

Alexa is an absolute god send for me 🤣. Have my daughters medication times as reminders on alexa. Week by week calender (monthly in one go is way too much for me) with a column each for everyone in the house. If it aint on the calender it aint happening lol.
And walking upto the local shop can make me need a lie down some days, which is insane because 3-4 years ago I was easily walking 30k steps a day.
And even on my medical notes it lists depression as an active major problem, I dont feel i am depressed...... I feel an immense frustration that things I feel should be easy can just be so so difficult at times. Like doing up a bra, i have no idea when I lost the ability to do that....... but i need one of my daughters to fasten them for me now. So tend to get the pull on ones and step into them, ir tops with built in support.

Thank you for this, i worry they will deem me incapable of caring for my daughter. So this has helped me with that anxiety

Hi I have had Fibromyalgia for over 20 years but only decided to claim recently as I get older it gets worse and I am no longer working I recently was able to claim long term sick pay. I had my face to face appointment yesterday. It seemed to go ok as the assessor understood what fibromyalgia is and how it affects you. So I now have to wait and see. She said I should hear in a couple of weeks. Happy to answer any questions about the assessment

You can request a “patient summary” from your gp. It is free and will list more than shows on the apps.
Just used this to claim on behalf of my father in law for AA.

Ooohhh I really hope your claim is successful 🙏

I am taking my daughter to the gp shortly so will ask for patient summary for ne, thank you

Just do the claim. The worst they can do is refuse you. And even then you can appeal.

The thing with PIP is your illnesses need to impact on daily activities. If they do to an extent then it's worth a try.

You don't really claim it 'for' a specific ailment. You just put what illnesses or disabilities you have and then how you manage the specific tasks.

It's not the illness or disability that they look at you for, it's for what you can't do in your life that they look at. Everyone is different. So, it's what you struggle with daily, not the illness XX good luck

It is about the impact of having whatever disability/ illness/ condition a person has, on their everyday life. If this is not documented in the 'right way' then the chances of being awarded will diminish. That is why so many people get help to fill in the forms, from support groups.