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Thread: Hello

  1. #1
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    Default Hello

    Wanted to say hello to everyone. I'm in the UK and was diagnosed this year after an episode or urticarial vasculitis. Then got joint pains, currently have joint pains and fatigue.

    Am interested in alternative therapies.


    *waves*





    *finds waving hurts shoulder*

    *waves less vigourously*

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Default

    EDIT: Please read my explanation and clarification in my post dated Oct 8th below. I'm sorry for any confusion I may have caused.

    Rob

    Moderator

  3. #3
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    Hello Furrydog

    Welcome to the site. There's lots of information on the board and the people here are very friendly and supportive.

    I'm in Canada, in lupus limbo. Lupus runs in my family both my sister and my mother.
    Oh look ... a cookie

  4. #4
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    Rob..

    I didn't know we do not discuss alternative medicines. I thought we don't allow solicitation of alternatives or the sale of anything.

    The site, Admin,..owner or as us as a family do not advocate alternative medicine without being under the supervision of a doctor, nor does the site endorse anyone's opinion. Nor do we advocate their use of any drugs outside what is prescribed and how it is prescribed.

    We have in the past discussed alternatives, food, herbs, exercise, vitamins, minerals, Eastern medicine and therapies....A subject I must say I have enjoyed...and some that have annoyed me.

    I understood we do not 'endorse' ones choice of therapy be it conventional or homeopathic but open to the discussion of it, their experience with it.

    Have I misunderstood the rule, Rob? I just don't want a person, Furrydog to feel misunderstood if the intent wasn't there to sell.

    I didn't read Furrydog's post, I am only referring to your reply. So, I am unaware of what he said, so maybe I am off beat?

    Love,
    Oluwa
    I have Lupus. So *^#@! what.

  5. #5
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Oluwa,

    The post in question was this members very first post, and in my opinion it came across as an advertisement for these so called "cures" or "miracle treatments" that we all have seen on the internet from time to time. We all agree that these sort of "treatments" can be harmful and very dangerous.

    These two factors are what I considered, and they are the reasons for deleting that particular post. There is no rule against discussing alternative medicines, and I'm sorry if my wording came across the wrong way. I saw what I thought was an ad for potentially harmful products. If that was not the intent of the new member's post, then I apologize.

    Rob

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    No, I mentioned them because I want to hold off from taking hydroxychloroquine for as long as possible and wanted to know if anyone else had used alternative therapies.

    If I had been advertising, I would have given some sort of website or address and asked people to contact me to buy them- which I did not do . As it is, I am new to this and have spent lots of money buying these 'alternative' treatments when treatment on the NHS is free. So I wanted to know if I was wasting money or not.


    I also wanted to ask about massage, yoga and pilates for join pain. But don't know if they are endorsed by the rheumatological association or not, so I won't ask for now.

  7. #7
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Furrydog
    No, I mentioned them because I want to hold off from taking hydroxychloroquine for as long as possible and wanted to know if anyone else had used alternative therapies.

    If I had been advertising, I would have given some sort of website or address and asked people to contact me to buy them- which I did not do . As it is, I am new to this and have spent lots of money buying these 'alternative' treatments when treatment on the NHS is free. So I wanted to know if I was wasting money or not.
    Hi Furrydog,

    I completely misread and misunderstood your intent. Please accept my apology for jumping the gun and drawing the wrong conclusion. I will not do that again. Thanks.

    Rob

  8. #8
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    Thanks Oluwu for clarifying and to Rob for apologising. It was a bit offputting having my first ever post deleted.

    But it was really nice of you to write what you did above and you didn't have to.


    I might write the post about massage, yoga and pilates then, if thats ok?

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    Hey Furrydog

    My doctor asked me to stay away from yoga. She feels that is too stressful on the joints. She flat out forbid my sister to continue with yoga.

    I do tai chi, that's gentle and you move your joints. I find it helps alot. It's also good for your balance, circulation and breathing.

    I take plaquenil and arthrotec 75, I also take omega 3 fish oil to greese the joints and glucosamine to help repair the damaged tissue between the joints.

    You can buy soft sided wrap around joint braces at the local drug store. The brand I use is tensor.

    It helps to ease the pain so I can do house work and drive my car with out having my knee seize up.

    Hope this helps.
    Oh look ... a cookie

  10. #10
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    That's absolutely OK Furrydog, please do. I'm sorry for the misunderstanding.

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