I have fibromyalgia. I'm worried my claim won't have been successful — Scope | Disability forum
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I have fibromyalgia. I'm worried my claim won't have been successful

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System Posts: 643

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  • tinatiny
    tinatiny Member Posts: 3 Listener
    Hi,I am new on here. I have fibromyalgia ( at least that's what the GP tells me) I applied for PiP in July and had assessment on Dec10th have just received letter to say they have everything they need.
    I don't feel confident at all about getting the award as have heard so many stories of people being turned down that have Fibromyalgia. A friend of mine has fibromyalgia too and can do a lot more than I can but I was turned down about 4 or 5 years ago ( I GOT NO POINTS!!!.) and my friend receives PIP.   I can't walk very far at all due to exhaustion and have to stop every couple of minutes as I just can't take another step. I struggle with day to day things as well. The brain fog, depression  and exhaustion are the worst and most days I achieve nothing and end up only being able to sit around or sleep. 

  • poppy123456
    poppy123456 Member Posts: 25,533 Disability Gamechanger
    tinatiny said:
    Hi,I am new on here. I have fibromyalgia ( at least that's what the GP tells me) I applied for PiP in July and had assessment on Dec10th have just received letter to say they have everything they need.
    I don't feel confident at all about getting the award as have heard so many stories of people being turned down that have Fibromyalgia. A friend of mine has fibromyalgia too and can do a lot more than I can but I was turned down about 4 or 5 years ago ( I GOT NO POINTS!!!.) and my friend receives PIP.   I can't walk very far at all due to exhaustion and have to stop every couple of minutes as I just can't take another step. I struggle with day to day things as well. The brain fog, depression  and exhaustion are the worst and most days I achieve nothing and end up only being able to sit around or sleep. 


    Hi,
    The letter you received is a standard letter, which is quite pointless because a decision can still take between 2-12 weeks.
    There are lots of people that claim PIP because of the way they are affected by Fibromyalgia, myself included.  PIP isn't awarded based on any diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.
    Natuarally on any internet forum you'll mostly only hear the bad stories because if someone had an award they're happy with they have no questions to ask so we don't hear their story.
    Please don't compare yourself to someone else. No one knows exactly how a person's conditions affect them. It's very easy to put on a brave face with things in life, just because you see a person that may look ok on the outside, doesn't mean they are on the inside.
    Once the decision's been made if you're not happy then you can request the Mandatory Reconsideration (MR)

  • tinatiny
    tinatiny Member Posts: 3 Listener
    Thank you for replying and sorry I didn't mean to sound as if I was comparing myself to my friend . I suppose I am just thinking negative as feeling that way at the moment. It just seems like sometimes it's the luck of the draw with PIP. I am not in a very good place at the moment and feel like I didn't explain everything in my phone assessment, things I should have said just went out of my mind. 
  • Tori_Scope
    Tori_Scope Posts: 7,005

    Scope community team

    Welcome to the community @tinatiny :) 
    feel like I didn't explain everything in my phone assessment, things I should have said just went out of my mind. 
    Many people feel this way after their assessment. It can be difficult to get across everything you think is important to your claim, but I think you've done well to get through it!

    You've mentioned experiencing depression, and not being in a good place at the moment. Are you receiving any support for your mental health currently? 
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  • tinatiny
    tinatiny Member Posts: 3 Listener
    Hi, Sorry I took a while to get back to you. At the moment I  have family support but have not spoken to my GP for a few months. The last time I spoke about it to my GP I was given an increase in Sertraline from 1X 50mg tablet daily to 3x 50mg tablets daily. The increase was too much and the side effects were terrible so I reduced it back down slowly and am back on 1 a day. I have had Fybromyalgia for about 5 years and the symptoms are worse than ever now. Going to see a G P is difficult for everybody I think because of Covid. There are not many appointments available unless you class yourself as an emergency so I have just given up for now.
    So far any G P i have spoken to about Fybromyalgia are not very helpful and I was just prescribed Tramadol and Sertraline, I was not even given any information so had to research the condition myself.
    I sometimes just feel invisible !!!!! Doctors have not been helpful and I haven't been able to get financial help as I had to stop work due to my health. I know I won't be the only one in this situation but it just makes me think there is no point in anything these days. I hate this feeling sorry for myself attitude I seem to have but can't seem to shake it off.shame
    The Stress over making a claim for PIP has made everything feel so much worse and the wait is awful.
  • Tori_Scope
    Tori_Scope Posts: 7,005

    Scope community team

    There's no need to apologise @tinatiny, it's enough to get anyone feeling down. 

    You're right that it can be difficult to get a GP appointment at the moment unfortunately, but it does sound as though you could benefit from chatting to them. 
    I reduced it back down slowly and am back on 1 a day.
    Did you do this with the support of your GP, or on your own?

    Are you interested in accessing talking therapy to help you cope with your mental health at all? If you live in England, you may be able to refer yourself for talking therapy on the NHS through the IAPT service. This means that you don't have to wait for your GP to refer you.

    You could also see whether there are any organisations offering mental health support in your local area through searching on the Hub of Hope.
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    Concerned about another member's safety or wellbeing? Flag your concerns with us.

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