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Fibromyalgia Action UK

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Nannyfibro profile image
23 Replies

Good Morning All, I have not posted anything for a while. But have been reading some of the posts.

I was sent a review last year in April then I got a letter this February saying that they have awarded PIP until February next year. However I got a text last week saying I have an appointment (phone appointment) for the 23 May which is on Monday. I’m literally anxious stressed out for the simple reason. My family member helped me as she was having to prompt me because they lived with me and could see my condition deteriorating. However now I don’t have that support due to fall out and there’s not been any communication for over a year and half. I have since been diagnosed with dementia early stages by GP. And planta faciatis (not sure if I have spelt it correctly 😂) I’m constantly forgetting things I’m trying to be positive about the appointment but am so stressed out that it’s brought on so much anxiety and stress that I am already suffering from and this has gone into overdrive I’m throwing up and spending much time in the loo just worrying I will not be able to explain myself well. Thank you 🙏 for reading.

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Nannyfibro profile image
Nannyfibro
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23 Replies
Blue-52 profile image
Blue-52

ahh bless you, I know it’s stressful, but think of it this way, you are not lying, you have a genuine illness, and all you have to do is tell the truth, write everything down ie from every ailment you have alongside fm, write down all the symptoms and how it affects your daily living, and hey you will have it all in front of you. You will be fine, and I really hope you get a lovely person. Gentle hugs.

Nannyfibro profile image
Nannyfibro in reply toBlue-52

thank you blue, I do write things down but get alll flustered and confused and my brain goes to mush it’s like a fuzzy feeling and I then go into coco land with the fairies. I have written it down all the symptoms and how it’s affecting my everyday life. Thank you for being supportive and responding. Much appreciated 🙏🙏

Blue-52 profile image
Blue-52 in reply toNannyfibro

ahh I know that feeling , it’s enough to send you loco. When you get the call explain 1st how you can misunderstand and how confused you get tell them you will be slow at answering. I wish you all the luck 🍀🙏

Nannyfibro profile image
Nannyfibro in reply toBlue-52

thank you very much Blue-52 🙏

Nannyfibro profile image
Nannyfibro

hi Ajay, I did have the paper assessment which Age concern helped complete. I will try and get through this as best as I can. Thanking you for your support and reply. Much appreciated

Nannyfibro profile image
Nannyfibro

HI Ajay, initially when I had the appointment the assessor came to the house and saw my condition. I don’t have anyone where I’m living& the family I have are all working and are unable to get time off to be with me. Or to be added to the phone conversation. In the DWP letter they said I could have someone added to the call.

Nannyfibro profile image
Nannyfibro

hi Ajay, you see what I mean. Confused to death this brain is a mush. My friend also called me to tell me it’s Tuesday. Everyday is rolled into one haven’t a clue some days what month or day it is. Regarding the cooker I stay well away because I’m a danger to myself I fancied boiling eggs and left them on the stove and started watching TV after half hour I could get burnt smell. I hobbled to the kitchen which was full of smoke and the eggs were black as boots same with the pan. Not only that I don’t have the concept or idea of much water to have put in the pan. Once my sister came from London to visit she cooked a meal and warned me stay away from the kitchen as she just took the pan out of the oven and she shouted to everyone and said don’t touch the pan and what I go and do touch the pan trying to move it and burnt my whole palm of my hand.

Nannyfibro profile image
Nannyfibro

thank you, you’re always there to help and support everyone on this group. Much appreciated 🙏🙏

Nannyfibro profile image
Nannyfibro

Hi Ajay, I was given higher as I have arthritis in lower back, broken coxix tail bone twice fell a month ago down the steps and have injured tail bone again. atheritis in ankles knees and bottom of sole of the right feet. And at the time I was being treated for sciatica.

Nannyfibro profile image
Nannyfibro

thank you 🙏

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

You could give our benefits helpline a call Monday morning, and they can maybe give you some additional tips and advice

FMA UK benefits helpline information leaflet
Nannyfibro profile image
Nannyfibro in reply toHazel_Angelstar

hi hazel, just seen it in the link thank you. I’m not with it sorry

Nannyfibro profile image
Nannyfibro

Hi Hazel, that would be awesome. Do you have there number please. I’m not sure where to navigate and get it from. Thank you 🙏

Onedaymore1 profile image
Onedaymore1

aww sorry this is happening to you. Just a thought, do you still have the paperwork from the previous successful application? Could you use that as a reminder of previous questions/ answers? Obviously update where you are getting worse, how you manage daily living activities. Wishing a positive,quick and easy outcome for you x

Nannyfibro profile image
Nannyfibro in reply toOnedaymore1

Good Morning onedaymore, I did not make a copy. But I was sent a form by CAB which arrived yesterday and I have made notes under each element. Im hoping that they ask questions from the form sent by CAB and they don’t confuse me more then I am. Thank you for responding and being supportive x

Onedaymore1 profile image
Onedaymore1

🤞 for you that all goes well for you x

Nannyfibro profile image
Nannyfibro in reply toOnedaymore1

thank you x

Latics1989-90 profile image
Latics1989-90

HiI'm so sorry you've got to have another assessment so soon after your last one. I just want to reiterate what everyone has said. Please make sure you have your form from CAB on hand to help you. They really shouldn't need to ask much once they know about your dementia. I really hope you get someone nice. Good luck for today

Lots of love Lynne xxxx 💜🫂💟🫂

Nannyfibro profile image
Nannyfibro in reply toLatics1989-90

thanks you latics1989-90

Just finished my assessment it was two hours. She went with it like a fine tooth comb and I was getting fed up agitated and frustrated as it was the same questions. However we will wait and see. Although she said I might loose my license and if I have notified DVLA. She can notify them for all I care as I don’t drive the car and it’s for ever growing mould inside it because of lack of it being used battery is dying constantly as I hardly drive it. We shall wait and see.

Nannyfibro profile image
Nannyfibro

Hi Ajay, and Everyone had my phone assessment today. It took 2 hours and 10 minutes. I felt interrogated. I really cannot understand why a phone consultation when I was visited and she saw me face to face how bad I was. I didn’t feel I was being listened to. I tried to elaborate on some of the questions. But she shut me up and said she would come to it later. But did not come to it. But in the end she asked me if I had notified DVLA about my condition. I told her I didn’t drive because of the severity of my condition and pain. If it went I wasn’t bothered. As I hardly go out because of the pain. So let’s wait and see what comes of this assessment

Nannyfibro profile image
Nannyfibro

I’m so pleased it’s over and done with. The stress and anxiety they put you through unnecessarily. They don’t realise what they are putting you through when you already have to deal with so much going on in your life.

Nannyfibro profile image
Nannyfibro

Hi Ajay, I already got a text from PIP saying report is in and will hear soon. That was very quick.

Nannyfibro profile image
Nannyfibro

thank you will do

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