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Thread: Hi from Downunder!

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    Default Hi from Downunder!

    Hi - I was diagnosed with SLE and Sjogrens Syndrome 12 months ago. I'm totally exhausted (from the illness) and frustrated from not being able to get satisfactory answers from Drs. I'm on Plaquenil, which appears to be helping, but has left me with some nasty side effects incuding hearing disturbances and skin pigmentation. I would appreciate any advice and support I can get! Has anyone had any success with natural therapies? I have to admit, I am totally disillusioned with so-called medical specialists and experts! Thanks - I look forward to your replies. Cheers, Karen.
    Last edited by Kaz73; 04-14-2010 at 05:34 AM.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Kaz73
    Welcome to our family. I am sorry to hear that the Plaquenil has given you undesirable side effects. It can be a very effective drug for most Lupus patients. What other symptoms do you have with your SLE?
    If you read through the forums, you will find that two of our members attended a Sjogren's conference recently and have posted notes about the conference here. The information is outstanding and may help you to understand and deal with that particular condition.
    As Lupus patients, we are told to be wary of natural remedies. Many ingredients in natural remedies will actually aggravate Lupus and cause a flare-up. I am sure that you will find many, many testimonials about people "curing" their Lupus using natural remedies. Be aware that most of these have not been FDA approved, researched or tested by legitimate sources.
    I understand your frustration with doctors and the fact that you cannot get straight answers. Do not put all of the blame on your doctors. Lupus is a frustrating disease, even to those in the medical field. The disease is not the same in any two persons, it does not follow any type of pattern, and it changes within the patient. Symptoms that you have today could disappear tomorrow only to be followed by a brand new set of symptoms. Also, lab work that is positive at one testing can be negative at the next. The disease also can develop slowly and its symptoms mimic so many other diseases. It is, therefore, difficult to diagnose and difficult for doctors to tell you exactly what is going on and/or what is going to happen. Living with this disease is like living with the unknown; we wait to see what it does and then try to treat, manage, and live with the options we are given!
    Everyone here, however, is more than happy to help you in any way that we can and as much as we can. We all understand how heinous and frustrating this disease can be and how it can cause us to experience a myriad of emotions. We want you to know that you are not alone and that we care, we understand, and we are here for you.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Smile Thanks!

    Hi Saysusie,

    Thank you so much for your words of encouragement. I feel as if I have spent the last 12 months searching for support - and now I have found it! I certainly don't mean to "blame" the Drs for not being able to answer my questions, but as i generally look well, I can't seem to express to anyone just how lousy i feel, and as you say, it is like living with the unknown. I have a lot of pain, fibromyalgia, chronic fatigue and photosensitivity (not great when I live in beautiful Australia where the sun always shines!)I was first diagnosed after a severe case of vasculitis after a lovely holiday enjoying the sun. I'm looking forward to exploring more of the posts on this site and once again - I sincerely thank you. Warm wishes, Karen.

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    Hi Karen
    Welcome to Whl, SaySusie has already started you in the right direction. I have found that I am able to counter act the chronic fatigue by starting the day with a light regiment of exercise. To start I did 10 minutes on my stationary bike. I know to the ordinary person that sounds like nothing. But to us it's a lot. Then I added 10 to 15 minutes of a low impact video. I could not do everything continually right
    away but after a time I could. This helped me get through the day with less fatigue. I can actually make it to 5 o'clock without feeling exhausted. I know I've only picked up on one thing, but you just need to rest the other posts and you will find answers and advice, support and most of all my favorite. "Cyber((((hugs)))))". You will make friends and maybe find someone near you that you can get together with.

    Stay with us, we are here for each other


    nonna
    Last edited by Nonna; 04-15-2010 at 03:33 AM. Reason: Cause as usual I'm doing this on my touch and my finger does not do what I want

  5. The Following User Says Thank You to Nonna For This Useful Post:

    Kaz73 (04-15-2010)

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