Newbie

Hi I’m Jacqui

I was diagnosed with Lupus 2-3 years ago and nothing more was done until recently when I was given the mild tablet for Lupus (stomach went mad so I stopped taking it). I also have osteoarthritis, rheumatoid arthritis, PMR, a bulge in my spine where discs have collapsed, inflammation of the bowel (so now my stomach rejects most things including my tablets), hiatus hernia and now I’ve been told my heart is not working properly! To say I’m in constant pain is an understatement but I put my other face on and smile at everyone. To see a rheumatologist where I live is near on impossible, we either don’t have one or it’s a 12 month wait.

Anyway, hello to all fellow sufferers, nice to meet you x

5 Replies

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  • Hi Jacqui, welcome to the club!! You have found a place where it is ok to moan and not have to put a brave face on things. Take care

  • Hello Jacqui, sounds like you have a few things to keep you busy there. :(

    Are you happy to have no rheumatology involvement? One option that might avoid the long waiting list is to see a consultant privately for an initial assessment, who then may be able to put you onto his/her NHS list. It's not an ideal solution, but it may be helpful in speeding things up and getting some coordination?

    Keep in touch anyway x

  • Hello Jacqui! What is the mild tablet you are speaking of??? That is an unreasonable time to wait to see a Rheumy .....I live in the US..I basically have no wait time....but we do have Trump..arrrgggggg....sorry anyhow....maybe a hospital visit will get you somewhere quicker?? I really have no idea, I have been reading here that so many in the UK can not get appointments...WHY, I wonder

  • they have socialised medicine there, big problem same with Canada, the US was heading that way with its latest imploding healthcare. You may have been spared!

  • Hi Jacqui296,

    Welcome to the LUPUS UK HealthUnlocked Community!

    We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK contacts who you can chat with over the telephone. To download or request this pack click here: lupusuk.org.uk/request-info...

    We published a factsheet on LUPUS: The Heart and Lungs which you may like to read here: lupusuk.org.uk/wp-content/u...

    Around 90% to 95% of people with lupus will experience muscle and/or joint pain. We published an article on our blog about pain management which you can read here: lupusuk.org.uk/pain-managem...

    Have you spoken to your GP about being referred elsewhere? We published a blog article on ‘getting the most from medical appointments’ which has a section on how to be referred to a different consultant lupusuk.org.uk/getting-the-... .

    Please keep us updated, wishing you all the best.

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