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Lupus
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Posted 6/8/2008 5:22 AM (GMT 0)
Hi everyone,

I am new to these forum things!

I am a 31 year old female who has been diagnosed with lupus a few years back.

I just got my dream job - National Group Exercise Manager and 5 months later i had to quit because my lupus had flared up so bad i just couldnt move for almost 2 weeks.

Over the period of a month i went from 60kg down to just under 50kg somewhere, i didnt even notice. Was too sore to eat.

My sister has severe lupus (among other things) and is on so many meds that all have side effects and havent really helped because she is still in a lot of pain.

To cut a long story short, i dont want to go down that road so i have chosen to see a kinaesiologist and try altnernative healing. My doctor is totaly against it and is trying to scare me into taking western meds.

Is anyone else out there doing alnternative medicine?

Has is worked?

Am i stuck with this condition for life or is there hope it will go.

It is so frustrating, your whole life is just turned upside down, can't work, cant do what i love which is teach classes and exercise. Its quite depressing really, dont want ot spend my life hobbling around sad

what to do?

 

Posted 6/8/2008 7:02 AM (GMT 0)
I would suggest getting THE LUPUS BOOK by Dr Wallace because he gives a list of common alternative treatments and if they make things worse, he does not say all make it worse but there are many that do. Also, lupus can kill you left untreated so I would at least take the plaquenil which has almost no side effects and the major one they warn you about is something that happens so rarely it is basically nothing to worry about just get an eye exam at least once a year- something everyone needs to do anyway as your eyes and teeth can give warning about potentially serious health issues before they become really really bad. Anyway, I found I respond better to western medicine and feel better but then again I have a ton more problems than just lupus.
Posted 6/8/2008 1:56 PM (GMT 0)
muppet, maybe you and your doctor can mix the two. Your doctor is just trying to keep it real, so many people cannot get their doctor to even say thay have lupus. If, you do opt for something else, keep notes on how and what works. It wounld be nice to have your doctors blessings.

redrose, I think most of us has more health issues then the lupus....I know I do.
Posted 6/8/2008 2:23 PM (GMT 0)
Don't use alternative treatment as your primary way to control lupus.  Lupus can be a very serious disease if left untreated.  Taking any med is a risk of side effects versus the benefit of controlling the disease.  Not everyone reacts the same to treatment so each of us is a medical experiment to find the most effective treatment with the least side effects.  Many are successfully treated.

Your first concern is to get your lupus under control and then work on returning to a normal life.  If you ignore treatment you can get into a cycle of flares and your health will deteriorate. 

If you are not happy with your doctor find an experienced rheumy and get a second opinion.  Many can return to an active and normal life.  Most of those do not post. 

Hang in there but don't ignore treatment.  There is no alternative treatment that has been shown to be an effective primary treatment but they might help your general health.

Bill

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