Hi, my name is MillieMay! — Scope | Disability forum
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Hi, my name is MillieMay!

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MillieMay
MillieMay Community member Posts: 29 Connected
in Start here and say hello!
I have daily chronic pain that is severe, it affects all my joints and my back.
I believe I’ve been misdiagnosed I feel I have both lupus and RA.
been getting gradually worse.
Hello to everyone. Will be nice getting to know you all.
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  • Karen7788
    Karen7788 Scope Member Posts: 598 Pioneering
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    Hi @MillieMay,
    Hello and welcome.
    Have you been referred to a rheumatologist? 
    I have RA and they think I also have Felty Syndrome. 
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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Good Morning @MillieMay welcome to our great group.
    I hope you are well this Saturday morning.
    When you are ready have a look around the site, you can join in on any of the chats/threads/debates or even ask you own question.
    Look forward to seeing you around.
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Welcome to the community @milliemay :) It's great to have you on board!

    Thank you for telling us a bit about your situation. Have you spoken to your doctor about the fact that you think you may have been misdiagnosed? Is this something that's being investigated? 

    Here's a link to the chronic pain and pain management category that teddybear12 mentioned, which I definitely think you should check out. 

    You can find our other categories on the categories page. 
    National Campaigns Officer, she/her

    Check out our Playground Accessibility Map
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  • MillieMay
    MillieMay Community member Posts: 29 Connected
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    Hi All,
    thank you so much for your comments, I was diagnosed with RA by a very good private rheumatologist. Then had to go on to nhs care was diagnosed with fibromyalgia.
    I believe the first diagnosis and I know I need to find a better local rheumatologist.
    my blood tests show constant inflammation.
    I have the butterfly rash on my face and lots of lupus symptoms.
    I will have a look at the pain section.
    thank you 
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  • Karen7788
    Karen7788 Scope Member Posts: 598 Pioneering
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    Hi @MillieMay,
    I attend a good NHS rheumatology clinic and can’t fault them, they’ve been excellent. I was diagnosed about 15 years ago and are on numerous medications including biologics. I also have osteoporosis in my hips and spine, was diagnosed with this following a wrist fracture. I have neutropenia so I have to be careful about infections etc. as I’m immunosuppressed and I’m also undergoing tests for Felty syndrome.
    I hope that your current medications are controlling your flares and if not they will probably use different ones until they get it under control. 
    Good luck with everything and you may find NRAS to be informative.
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