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Fibromyalgia

hi my name is Lisa I own a cafe I had an accident that caused fibromyalgia it's affected every part of me. My eyes are blurred most days I'm struggling with walking I suffer horrendous headaches and have weakness in both arms I can't run my business anymore I have constant accidents resulting in burns all up my arms. I'm constantly exhausted. My doctors have advised I need to give my business up. I need advice on what help I can get if I give it up because it's killing me

Replies

  • poppy123456poppy123456 Posts: 11,062Community champion Disability Gamechanger
    Hi,

    You need to make an appointment for a benefits check with your local CAB. It's impossible to advise further on an internet forum because no one knows your full circumstances. You also have your own business to think about which can be very complicated. Certainly not something to be discussed on an internet forum.

    In the meantime have you considered a PIP claim?  If you've had the condition for at least 3 months and expect it to last a further 9 months. This isn't means tested and you can claim this and work. It's not awarded based on a diagnosis, it's how your conditions affect your ability to carry out daily activities based on the PIP descriptors.

    Evidence will be needed to support a claim. A claim can take several months, maybe longer. You'll most likely need a face to face assessment as most people have them. See link.

  • AlwaysoneAlwaysone Posts: 15Member Connected
    Hi Lisa - I don't know how you are managing to do anything - I was so relieved to be diagnosed with FM this year because I thought I was dying ;life certainly wasn't worth living. I support the suggestion to contact CAB - so helpful especially as I have a 3 second memory at the moment.they helped make a start on all those horrible phone calls and forms. Good luck
  • Lisacafe12Lisacafe12 Posts: 3Member Listener
    Thank you it's took a long time to come to this decision I've tried to tell myself for months I'll wake up and just feel normal again I've bin through so many tests and physios I'm on a lot of medication which makes me a zombie my body is to tired to move a lot of the time now. I'll make an appointment with cab and try and get some help x 
  • poppy123456poppy123456 Posts: 11,062Community champion Disability Gamechanger
    I know exactly how you feel. I've had fibromyalgia for more than 10 years, diagnosed by a rheumatologist several years ago. I also have other conditions too. There's no treatment available unfortunately and i've found that no amount of medication will ever fully take my pain away, having previously been on more than 28 medications at one time. Everything i've tried has failed for me.

    You do learn to cope the best way you can. I know my limit to what i can and can't do, my worst times of the day against my better times of the day. Brought up 3 small children alone but we cope because we have no other choice.

    Cold makes my pain a million times worse. Hot baths are the best.

    I hope you get the advice you need and if you have no joy with CAB then try your local welfare rights.
  • AlwaysoneAlwaysone Posts: 15Member Connected
    @poppy123456

    I've had Lupus all my life - always thought I managed quite well but Fibro is a whole new definition of pain and misery! I was a single mum for 20 years too. Do any of your children have AI?

  • AlwaysoneAlwaysone Posts: 15Member Connected
    Thank you it's took a long time to come to this decision I've tried to tell myself for months I'll wake up and just feel normal again I've bin through so many tests and physios I'm on a lot of medication which makes me a zombie my body is to tired to move a lot of the time now. I'll make an appointment with cab and try and get some help x 
    I've done this for 4 years - it didn't get better and now I have 4 years of consequences to sort out! I get full ESA/SDA etc and 2 bed housing rate. Ironically my PIP was cut which made things a lot worse and I haven't been able to successfully appeal it but CAB are on it. Whereabouts do you live? Only asking because, here in Hampshire, you can self refer to iTalk - it really helped me!  x
  • poppy123456poppy123456 Posts: 11,062Community champion Disability Gamechanger
    @Alwaysone No, none of my children have it. SDA? do you mean SDP?
  • BlanchetteBlanchette Posts: 7Member Listener
    SDA severe disablement. allowance .
  • poppy123456poppy123456 Posts: 11,062Community champion Disability Gamechanger
    SDA severe disablement. allowance .
    I know what it is but it no longer exists. This was replaced by Incapacity benefit in 2001, and IB was replaced by ESA.

    There's a disability premium now which a lot of people mistake it for SDA and it's called severe disability premium. It's paid on top of Income Related ESA, if you claim daily living PIP or mid/high rate care DLA, live alone and no one claims carers allowance for looking after you.
  • AlwaysoneAlwaysone Posts: 15Member Connected
    @Lisacafe12 Other avenues might be through Pals at the hospital -are there any fibro related clinics? help with transport .Social services - local volunteers and charities. Adaptations and care at home? Physio assessment? Counselling? 

    I'm just trying to  think of all the help I'm getting! I have a wonderful young support worker who has been a great help. 
  • AlwaysoneAlwaysone Posts: 15Member Connected
    I'm waiting for my report from the Rheumy  saying it's fibro - I'll forward it to the DWP and suggest where they 'file' it!
  • Pippa_ScopePippa_Scope Posts: 5,858Member Disability Gamechanger
    Hi @Lisacafe12, and a warm welcome to the community!

    I'm so sorry to hear what you're going through, and I'm glad to see you've had some support from other community members. You're not alone, and we're here to help. Please do keep us updated with your circumstances and we'll advise where we can.
  • poppy123456poppy123456 Posts: 11,062Community champion Disability Gamechanger
    Alwaysone said:
    I'm waiting for my report from the Rheumy  saying it's fibro - I'll forward it to the DWP and suggest where they 'file' it!
    I would advise against doing that and keep hold of it for future evidence. Not that a diagnosis, helps claim PIP/ESA. Sending that to DWP could be classed as a change of circumstances and you maybe sent more forms for which ever benefits you're claiming.
  • AlwaysoneAlwaysone Posts: 15Member Connected
    You're right, diagnosis bears no relevance but my DWP woes has been going on since last November when my assessment was brought forward a year and my answers were unfairly edited. 
  • Lisacafe12Lisacafe12 Posts: 3Member Listener
    If you make make a new claim for Housing benefit I've been told you have to go onto universal credit can you still get pip or ESA as well 
  • poppy123456poppy123456 Posts: 11,062Community champion Disability Gamechanger
    PIP isn't part of UC. If you claim UC for the housing element then all your other benefits then move across to UC. Income related ESA doesn't exist for new claims anymore because all areas are now a full UC area.
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