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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyFibroTeam Member asked a question 💭
Caerphilly, UK

As anyone gone on there own? I have my appeal on Wednesday. I'm petrified. This whole process has been horrific. I've applied for pip twice. I've had an assessment where I was awarded zero points.
The person who was meant to go with me can't make it. I only got my letter last Monday. So it's a bit short notice.
I have FM along with depressed anxiety and panic attacks. I don't go out except to work. I work 4 hours 4 days a week. I have Wednesdays off to recover.

May 5, 2017
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Answer Summary

Members rallied around someone preparing for a PIP tribunal hearing, offering practical advice on presenting their worst-day symptoms,... Read more

Members rallied around someone preparing for a PIP tribunal hearing, offering practical advice on presenting their worst-day symptoms, requesting home visits if needed, and getting support from Citizens Advice Bureau to strengthen appeals. Several members shared their own difficult experiences with the assessment process, describing dismissive assessors, long wait times of 4-8 weeks for decisions, and the emotional toll of being questioned like they had committed a crime, with one member noting that many people do win on appeal. A recurring theme was the frustration that assessors often lack understanding of fibromyalgia, the importance of not downplaying symptoms during assessments, and the heartbreak when appeals are denied despite genuine struggle.

A MyFibroTeam Member

Hope it goes well on Wednesday. It may be helpful for you to make a list before you go of the things that you struggle with so you have something to focus on and have an answer ready when they ask you a question, may help with your memory. I don't know if you have a copy of your pip form that you can look through to see what answers you put. The main things with PIP are about looking after yourself so washing dressing, shopping, going out, preparing meals, communicating with people. I think if you do go to appeal a lot of people do win it on appeal so good luck.

May 5, 2017
A MyFibroTeam Member

Sorry to hear that. The odds are stacked against people now with PIP and it is really hard to get an award. CAB are good at completing the forms so for future reference its good to get them to support your application. Look after yourself.

May 13, 2017
A MyFibroTeam Member

You have to tell them what the worst day you have. Don't tell them about the good days. Not lying just telling them about the worst side of this as full illness. Good luck x wish I could come with you x

May 6, 2017
A MyFibroTeam Member

Hi Michelle. It was about 4 weeks when I got a reply. Capita then contacted me soon after for an assessment. The assessment was ok....it was hard sitting there for an hour answering questions. The assessors report was awful....basically told me I was lying. I contacted citizens advice, they have been amazing. They wrote my appeal.
I don't think doctors know how to deal with FM.
I used to work full time go to college in the evening's 2 nights a week and go to the gym 4 times a week. Now I work part time...in pain all the time...some days the pain is worse than others. I need help going up and down stairs. I need help bathing...dressing. I nap every day. Fatigue is over whelmimg. Fibro fog is really bad some days. I forget mid sentence what I was talking about. The pip experience is not pleasant but don't give up. Get in touch with CAB. Get as much evidence as possible. Hope that helps.

May 5, 2017
A MyFibroTeam Member

I still haven't heard anything
So sorry to hear you didn't get any award it's disgusting they don't know enough about fibromyalgia 😘

June 5, 2017

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