Just diagnosed, what now?

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Just diagnosed, what now?

Postby Pretzelnut » Tue Nov 26, 2013 10:51 am

So I got diagnosed about 8 weeks ago with fibromyalgia. I knew it was coming as I was displaying all the same symptoms as my mum who was diagnosed a few years ago. The rhumatologist has said it was triggered by my childhood trauma, a lot of what the rheumatologist said made a lot of sense and it was a huge relief to finally have an answer as to what was wrong with me.

I don't have any arthritis which is good news for now. However I am constantly exhausted. Nothing I do makes me feel awake. Im always half asleep. Ive been having a few near misses recently due to the brain fog, I've almost burnt my kitchen down, almost burnt my house down too.

I already have a DLA claim and I receive Low rate mobility due to me having PTSD and being unable to go to new places unsupervised due to anxiety and panic attacks.

I receive income support and receive the disability premium.

Do I need to inform DLA of the change in diagnosis etc. I have applied for the warm home discount of £140 as I have to constantly have my heating on full so that will go a little way to paying my winter bill.

Any advice will be much appreciated.
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Re: Just diagnosed, what now?

Postby wendy10 » Tue Nov 26, 2013 11:45 am

hi i have fibro,arthritis,lumbar dysfunction,bulging discs,pelvic intsability,curvature of the spine and suffer anxiety and hyperventalation attacks.... i was signed off indefinate by my doctor... i had medical by the e.s.a medical and cause i could lift my hands and move my feet i was told i was not entitled to anything... i apealed and they refused it... so was told by them im fit to work... even though my doctor and specialist had written and said different... i was told i had to apply for work... i signed on for j.s.a but was told that becuase my husband was working i couldnt get it.. hes only on the minmum wage.. we are really struggling and getting no help at all... i was diagnosed a couple of years ago.. but know i have had it longer.. mine was from the trauma due to something happening when i was a child and car crash...
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Re: Just diagnosed, what now?

Postby FluppyPuffy » Tue Nov 26, 2013 12:51 pm

It's not a straight forward thing to answer Pretzelnut. In an ideal world, when dx'd with a new condition, you'd let DWP know about it, and they would reassess things and add something extra on if you qualified for the next level up. Unfortunately, rather than an ideal world, DWP seem to have their own little world where they can make things up as they go alone. This means, when advised about a claimant's Change Of Circumstances, they can do one of 3 things. Firstly, and ideally, they can reassess a claim and increase it to the appropriate level, depending on the impact the new circumstances have on the claimant's mobility and care needs. The second option is the claim is reassessed but left at the same/current rate being paid. Not ideal, but a far better option than the third and final one, which is the claim being reassessed and either the decision made is that the claimant qualifies for a lower level than what they are currently receiving, or that the claimant is no longer entitled to to DLA at all :scream-1: :scream-1: :scream-1: :scream-1: :scream-1: :scream-1:

For something like this, speaking to a Benefits Adviser would probably be your best option as they should be able to give you advice more specific to you and your current situation as well as possibly helping you prepare and complete the necessary paperwork for DWP to consider your Change Of Circumstances.
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Re: Just diagnosed, what now?

Postby Pretzelnut » Tue Nov 26, 2013 9:59 pm

Thanks, I have had a lady from the council who speciaises in benefits come out and fill in all my paperwork. She does my mums too. Only thing she cant help with is appeals as she has to direct us to the CAB then.

I shall drop her an email and see what she says.

Im expecting that within the next few months I will be diagnosed with CFS, I cant remember the last day that I wasn't tired, or falling asleep.
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Re: Just diagnosed, what now?

Postby zappa20 » Wed Nov 27, 2013 4:56 am

wendy10 wrote:hi i have fibro,arthritis,lumbar dysfunction,bulging discs,pelvic intsability,curvature of the spine and suffer anxiety and hyperventalation attacks.... i was signed off indefinate by my doctor... i had medical by the e.s.a medical and cause i could lift my hands and move my feet i was told i was not entitled to anything... i apealed and they refused it... so was told by them im fit to work... even though my doctor and specialist had written and said different... i was told i had to apply for work... i signed on for j.s.a but was told that becuase my husband was working i couldnt get it.. hes only on the minmum wage.. we are really struggling and getting no help at all... i was diagnosed a couple of years ago.. but know i have had it longer.. mine was from the trauma due to something happening when i was a child and car crash...


It's complicated and a lot depends on your circumstances and history. Were you a new ESA claim and had previously been working, or were you transferring from being paid the older Incapacity Benefit over to ESA? When you appealed and failed , was this a Tribunal decision or a DWP reconsideration ?

Generally anyone with a partner who works or earns more than a pretty basic amount won't be eligible for ESA income based.

If you feel your income is low , you could perhaps try putting your details into one of the online benefit calcualtors like www.turn2us.org.uk and seeing if you're eligible for any other financial help. eg housing benefit or working tax credits etc. Or it might be an idea to contact CAB or a welfare officer and ask them to do a full benefit eligibility check.
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