pip updates: Hi All, Looking to see... - Fibromyalgia Acti...

Fibromyalgia Action UK

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pip updates

10x10 profile image
22 Replies

Hi All,

Looking to see if anyone has done this before

I got rewarded the high rate of pip on both components

I’m in the stages of requesting my ill health retirement and I seen on here that people that had been through the illhealth some had said to request the report from pip assessment if they get pip and send that off as evidence to my I’ll health pension scheme

I did this and got my report

On looking on my pip assessment report it said to be reviewed in 3 years

The reason being although my physical elements they don’t think will improve they felt my mental health would so there for a review in 3 years for my pip

I’ve just been diagnosed with ADHD which was emotional because now I know why I have struggled all my life so much

Do you think I should send this new information to pip now I have had a diagnosis

It’s only with the assessor saying on my report to be reviewed in 3 years because she thought my mental health could improve

I’d be greatful to hear if anyone else as done this my pip claim is up 2026

I’m 55 and thinking with this new diagnosis would I have to get reveiwed every 3 years

When it’s clearly stated on the assessment

Physically she can’t see my chronic pain getting any better

Mentally she could improve there for assess

In 3 years time

sorry hope this makes sense what I’ve wrote x

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22 Replies
Dizzytwo profile image
DizzytwoModerator

Hi there, my personal opinion would be to wait and then add it to the review.l when it's due. You are already on high award for both so your not going to benefit further money wise.

But by adding it now you may have to go through the whole process again. And to be honest it may not make any difference time wise.

So I would keep it as back up for when I got reassessed. But that's just me .

Momo

DodgeDhanda profile image
DodgeDhanda

Hi Ten.

It's a new diagnosis & if I'm not mistaken the DWP say that any changes & U should make the DWP aware.

If Ur not sure check up on the government website & then read up on if U need to tell them as it will affect any money that could be on top of what ur already getting.

Also with an accurate diagnosis of adhd, it could mean that they move U to the protected group & be it 3 yrs or 5 yrs U rightly stated ur health situation isn't likely to change.

In short Ten have a look on the government website & everything that's on there is the actual truth & safest site to see what U need to do.

DodgeDhanda profile image
DodgeDhanda in reply to DodgeDhanda

Sorry I forgot to include website address.

gov.uk

bertie1606 profile image
bertie1606 in reply to DodgeDhanda

There is no protected group with PIP, and the op is already on the highest rates for PIP

DodgeDhanda profile image
DodgeDhanda in reply to bertie1606

No ur right as I mixed it up with ESA.

Regardless of rates I'm sure U need to let the dwp know as it may change other entitlements for the op.

Dinkie profile image
Dinkie

Has your condition changed or is it that a label has been attached to the symptoms you had when you first had your PIP assessment. PIP is, as you know, is granted or not on how you are affected not on the actual name of the illness. If your symptoms are exactly the same then personally I would probably wait for the review paperwork to arrive, which will be next year as they seem to send them out up to 12 months before the review date.

Dizzytwo profile image
DizzytwoModerator in reply to Dinkie

I agree Dinkie 👍

Dinkie profile image
Dinkie in reply to Dizzytwo

I do so hate labels though! I get upset when I am defined by a label.

Gigiruth profile image
Gigiruth in reply to Dinkie

Good point,you have not had a change in how you are ,just a diagnosis of why. Therefore you would not have to notify until the review. If you feel worried about not notify ,give them a ring to confirm and ask the name of who gives you advice. Stress it is not a change in function.

Purplelife123 profile image
Purplelife123 in reply to Dinkie

I agree as well I have just gone through a review and was went to enhanced from standard. I was awarded standard mobility as well so I was diagnosed with anxiety and depression only a couple of weeks later. I sent these details in whitch triggered them to look at your claim again which I didn’t realise. They looked at my whole claim again and reduced me back to standard. They reduced me 2 points which left me with 11 … you need 12 for enhanced. I could kick myself I thought I was doing the right thing. I didn’t want my claim looked at again just telling them about something new. Wait for your review I wish I had.

bertie1606 profile image
bertie1606

I agree with Dinkie and Dizzytwo, I would wait until your review. I had a new diagnosis before my last review and included in my review forms, they had no problem with that. I was already on the higher rates so it wouldn't have changed anything if I had told them sooner. If you tell them now they could ask for a review now x

10x10 profile image
10x10

Thanks all

For your replies

I just didn’t know if I had to inform them

I also hate labels 😢

Thanks again everyone I really appreciate it x

Flyfishing123 profile image
Flyfishing123

I contacted them when I was diagnosed with Fibromyalgia and they did a brand new assessment. I would just wait.

You say in your post that you requested the PIP report to help with your Ill-Health Retirement. You need to think about whether the report helps your application or not. If the assessor thinks you might get better and they could reduce your PIP at the end of 3 years, does that help your employer to refuse ill-health retirement? You may find that just using the DWP letter that states the points awarded on PIP and the benefit amounts is a better option. A copy of your blue badge can help, also any assessment your Local Authority has done to put handrails or other aids in your home. Request copies of all letters your Hospital Consultants have written to your GP - you are entitled to copies from the hospitals, and you can request a copy of your medical records from your GP, although that might not include the letters from hospitals. You also need a copy of the ill-health retirement rules and definitions from the pension fund. Your application needs to address the criteria they use to make the decision. If there are tiers or levels of ill-health retirement with different pension entitlements or review periods, it's important to make sure your application fully matches the tier you are aiming to get.

10x10 profile image
10x10 in reply to releasethemagic

Hi

Thank you it’s been a long process with this I’ll health retired been going on since January

My occupation health doctor done a report

He also stated pain wise he doesn’t think it will improve but my mental health might

Then then write to my gp asking other question that went back to them beginning of June

I will ring the pension agency and tell them I’ve now been diagnosed with ADHD

I was just worried if I also had to tell the pip

Thanks for your advice x

vikki123456 profile image
vikki123456

I have fibromyalgia and ADHD there is a link and having ADHD is what makes fibromyalgia difficult and why we are both in so much pain because our brains are running faster than most, I myself live in flight or fight mode in my brain and this has led to me developing fibromyalgia in the first place. People talk about remission with fibromyalgia or fibromyalgia flare ups. I do not have any pain free hours let alone weeks or months

10x10 profile image
10x10 in reply to vikki123456

Hi Vikki

I am exactly the same no pain free days

I try everything to combat inflammation

Only just then reading making a drink of

Turmeric/pepper/cinnamon/ginger powders are supposed to be great for

Fibromyalgia and other conditions

Don’t know if it’s true but il have ago

Thank for your reply I never knew ADHD and Fibro were linked x

vikki123456 profile image
vikki123456 in reply to 10x10

There was a study in 2010 and another in 2017 about the connection. I am a children's disability social worker and in less than a year I have come across 2 mothers aged in there 40's like me that have both ADHD and Fibromyalgia. It appears to be more prevalent in women, than men. Women are usually the main carer of there children and it is this role that hides there symptoms of ADHD, due to their kids routine, school runs etc. however once the children become more self sufficient, that's when there life starts to unravel. That's also when the ADHD brain is exhausted and overwhelmed and starts sending disorganised pain signals etc. I know other people with fibromyalgia and chronic fatigue, whose pain is no where near mine. I wish I could have a break and be like them. I find working helps me, but at 5pm I am in bed every night and all weekend. my partner says I live to work, not work to live. He has autism and also has chronic fatigue, we are a right pair

10x10 profile image
10x10 in reply to vikki123456

Aww bless you

That’s for that information

I had to give up my job of 20 odd years cause most days I was bed bound with the pain and fatigue

Since you told me about the adhd and fibromyalgia I’ve had a read on line and it’s unbelievable

The way it’s linked and heightens the symptoms

Thanks again x

vikki123456 profile image
vikki123456

I've also tried everything. I had a tens machine and a clip in my ear trying to zap my vagus nerve as I read that can help, unfortunately it didn't. See the link mayoclinic.org/tests-proced...

vikki123456 profile image
vikki123456

I take non stimulant ADHD medication as it's helps with my fibromyalgia symptoms. Also when I was on the max dose of amertripoline for nerve pain, (75mg AM and PM) when it was increased to help with my depression to 100mg X2 daily, it stopped the electric shocks I have in my hands. I told my GP to consider prescribing it to others with fibromyalgia if 75 didn't work. This means I can drive again. I suffer terribly with restless legs syndrome, except it affected my entire body and it was torture. 75mg AM, PM Venoflaxine reduced that significantly. Just sharing my experience. I am living with fibromyalgia and ADHD, rather than suffering from it. Took me a few years to get there but I now manage it, rather than it managing me. If I ever go out, which I can't 90% of the time as I get over stimulated and will pay for it later. But when I do, I always give myself a couple of days rest afterwards. People who don't live with these invisible illnesses/ disabilities just don't understand how it affects me as I am the life and soul of the party, because I have ADHD. They wonder why I use a crutch one day and not a few days later!

10x10 profile image
10x10 in reply to vikki123456

Omg thank you so much for this

I’m on pregabalin and amitriptyline at the moment, but last week stopped taking the pregabalin because of side-effects. I won’t know till tomorrow what medication I’ll get for ADHD, but I will speak to my doctor over the medication that you’re on. I wouldn’t mind trying that myself because we seem to have very similar symptoms. I’ve been on different medications to no avail but thanks so much for this. I do really appreciate it x

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