newly diagnosed

hi, new to all this, was diagnosed in 2010 with osteo arthritis but was always convinced that it was more than that. i've had every test going and lots of blood tests until last week after 5 years I've finally been diagnosed with RA which all now makes sense. Because its taken so long to get there, I've become so unwell i have to give up work, and now try and understand the minefield that is the benefit system

11 Replies

oldestnewest
  • welcome to the group.

  • thank you mike, got loads to think about now. benefits are the last thing i wanted but working has become so difficult. trying to do shifts and commuting have certainly taken its toll on my health.

  • Hi I was diagnosed with RA 3years after I thought I was going mad. I also was having problems keeping up with a very intensive job that I had to swap for a job that I could cope with and the relief was instant. I did grieve for the life that I used to have but 18 months on and now taking 20mg methertrexate injections weekly (after trying hydroclorinequinine and oral methertrexate) and a top up every now and again of steroid injection I am now able to try and control this dam disease instead of it contring me. I have a lot of help, the methertrexate team of nurses and doctor at the Wharfedale hospital are fabulous and always there for any questions, you just have to ask.

    I really hope that you get medication that will make you feel better as pain is really awful in making you feel really down, sending you very kind wishes.

  • Thanks Wendy, only just started Hydroxychloroquine and it takes a while to work, hopefully by the time i leave work i will start to feel the benefit. I'm just trying to get my head around everything. the diagnosis and redundancy came within a week. tried to be so independant for so long and hide everything from my kids so they didn't worry.

  • Hi dawn3570,

    we have some publications on benefits. I have put a link to them below for you. There is also a list of contacts in the back of organisations that may be able to help :

    nras.org.uk/publications/be...

    nras.org.uk/publications/ho...

    I have also included a link to the section on the government website that gives information about financial help and benefits for disabled people:

    gov.uk/browse/disabilities/...

    Hope you find these useful

    regards

    Beverley (NRAS Helpline)

  • Thanks Beverly, been looking at different websites but nothing made any sense. it was all making my eyes go cross eyed and emotional so i gave up. These publications are really helpful

  • If you need any more help Dawn feel free to give us a call on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    The benefit system is a bit of a nightmare and although we are not the experts we may be able to signpost you to other organisations that can help,

    Beverley

  • i do appreciate your help x

  • Welcome dawn3570. I hope you now start on the road to better health. A little patience is needed but once you start reacting to the meds you should notice considerable difference. We've all been where you are just now at the start of treatment whether we had early diagnosis or not but the difference will be a marked one once you settle into the mix for you, & with a bit of good fortune HCQ will make that difference. It was my first DMARD & worked for a good while but as can happen it became less effective but there are plenty for your Rheumy to choose & mine was methotrexate. 6 years on & I'm on the whole reasonably well controlled. I do have up & down days, particularly if I've done too much but that's usually when I'm having a really good day & overdone things & not listened to my body, we never learn! I also have OA which was diagnosed at the same time as RD & which thankfully is pretty much covered by pain relief & exercises after my Rheumy asked my GP to perform a full pain relief review. It's taken a few months increasing the doses but I'm now on top of that now & reached effective levels.

    As well as the excellent advice you've received from Beverley if you find you would like to speak to someone about entitlements I found our local Citizens Advice Bureau helpful re benefits. They had lots of info & helped me when I applied for PIP. I was like you & didn't like the thought of needing to apply for help & have to admit the process took a little while but it was worth the wait & was awarded it at the beginning of the year. One thing my advisor said was a bit of a throwaway comment & he possibly says it lots but he said I'd paid into the system all my working life & all I'm doing is dipping into what I've paid. Those few words helped me feel less of a scrounger somehow & more entitled, I'm claiming a little of what I'd contributed all these years. I'm in the Blue Badge Brigade too & that's been really worth applying for!

    I hope you find the site as helpful as I do & hope to see mor of you now you've found us! :)

  • For the short time ive been on here, everyone has been brilliant and so helpful. It puts everything into perspective knowing your not alone in all this and no matter how your feeling there is someone who understands where your coming from.

  • Glad to hear it!

You may also like...