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    Cheers SaySusie. The problem I have at the moment...

    Cheers SaySusie. The problem I have at the moment is one of the GPs at our surgery says no raised ESR then no flare up. Then 2 weeks ago I was in A&E barely able to stay awake with a BP of 76/49 with...
  2. Thread: Hello There

    by SuzyB
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    Many thanks all. I did have some interesting...

    Many thanks all. I did have some interesting information from the lupus nurse at St Thomas' in London. She said that the standard for checking disease activity in Lupus is ANA not ESR as ESR can be...
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    I know just how you feel Bella. I'm currently the...

    I know just how you feel Bella. I'm currently the only earner in our household as my husband was made redundant just before xmas. Yet I'm struggling.. I'm so tired I get up, go to work, come home,...
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    Slowly Getting somewhere

    After 6 months of needing to sleep for on avg 11-12 hours a day I'm slowly getting somewhere. Although it often feels like it's one step forward and two steps back.

    I saw my GP who wants to rule...
  5. Thread: Hello There

    by SuzyB
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    Yeah in the UK it's really frowned on if you try...

    Yeah in the UK it's really frowned on if you try to change dr & youre made to feel bad.
  6. Thread: Hello There

    by SuzyB
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    14
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    1,285

    Well she couldn't answer either :( she suggested...

    Well she couldn't answer either :( she suggested my ESR & CRP levels are being falsified/masked by the prednisilone & naproxen. I showed her a photo of my very swollen foot when my ESR for the same...
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    I know this is a really old post but I'm only in...

    I know this is a really old post but I'm only in Bucks, UK
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    Sticky: Last year whilst in Tunisia for a holiday I came...

    Last year whilst in Tunisia for a holiday I came out in what I can only describe as little blisters in one patch around my neck and on my shoulder on one side. I also felt extremely tired. I spoke to...
  9. Thread: Hello There

    by SuzyB
    Replies
    14
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    1,285

    Got an appt to see GP tomorrow. Want answers to 2...

    Got an appt to see GP tomorrow. Want answers to 2 main questions. 1. Why is my ESR 'normal' when I have visible inflammation? And 2. What can I do to get my energy back & where's it gone?
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    Sticky: My recent brain fogs (that I can remember) ...

    My recent brain fogs (that I can remember)

    Getting out of the shower going to towel dry my hair and wondering why it feels odd (forgot to rinse the conditioner out)
    Sat in a meeting and couldn't...
  11. Thread: Hello There

    by SuzyB
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    1,285

    I guess it's got to the point now where I've had...

    I guess it's got to the point now where I've had enough. All I do Monday to Thursday is sleep and go to work, I have no energy to see my family or friends. And then on a Friday and Saturday I am...
  12. Thread: Hello There

    by SuzyB
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    14
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    1,285

    Many thanks. I have a rheumy but she's not...

    Many thanks. I have a rheumy but she's not brilliant. Last time I saw her she told me off for not having had a bone density scan. (How was I to know) she scheduled one which I had last Sept & I've...
  13. Thread: Hello There

    by SuzyB
    Replies
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    1,285

    Hello There

    I have just found this site and thought I would say hello.

    I live in the UK and so far have been diagnosed with MCTD, Sjogrens, Raynauds and SLE.

    I've had a nightmare recently with...
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