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ColleenT
03-27-2008, 11:51 PM
Hi Everyone,

I'm Colleen from Durban South Africa. I was diagnosed with SLE and Sjogren's a month ago. I've always had joint pains of varying intensity, but mostly mild.

I've had 2 flares in the last 6 months where my body just seems to seize up and I find it difficult to move. With this I usually spike a high temperature as well. But i seem to be able to control it with Myprodol and within a day or two I feel ok again.

Is SLE a progressive disease.......does it get worse as time goes by?
Would love to hear from someone.

Colleen

Morpheus
03-28-2008, 02:24 AM
Hi colleen,
Im from Cape town SA.

Glad to have you on board.
always nice to have fellow south africans to speak to.

Yes this is a progressive disease.
We do have our periods of remissions as well. when all seems fine.
As well as periodic flare ups.

I think all would agree that some symptoms just come with the "territority" :)
Like chronic fatigue, headaches, aches pain etc.

The canadian luus org has a free book callled "Lupus:disease with a thousand faces"
It is very informative. Please have a look see.

Remember we are all here for each other. You dont have to be alone.

Saysusie
03-28-2008, 07:55 PM
Hi Colleen :lol:
Welcome to our family. Lupus can be a progressive disease, but it is not progressive like cancer. As Morpheus said, we have periods of remission where we are relatively symptom free. Then we have periods of "Flares" where our disease is active.
Progression is not written in stone, some patients can present with certain symptoms and never develop new ones. But, then, some patients can develop new symptoms, including having their internal organs damaged by the disease.
How your disease progresses cannot be determined. The best thing that you can do is to take every measure to avoid flare-ups! Lupus is, by definition, unpredictable :?

Peace and Blessings
Saysusie

sits_inthe_corner
03-29-2008, 12:57 AM
Welcome Colleen

I'm a 48 yr old female in Canada. My mother had lupus and my sister has it. I'm currently being investigated for it.

My sister is very different from my mother....and I'm different again from both of them. My mother went undiagnosed and untreated. My sister was diangnosed in her late 20's and has gone into remission for lupus, but she has active ceiliacs which she is able to control but it will always be apart of her life. I'm hoping she stays in remission.

Be kind to yourself. You have to find a balance of keeping you body flexible and in shape and not over doing it. Get proper rest and diet. Try to have healthy ways of dealing with stress...stress is a big enimy to lupus along with a few other things. Different people are triggered by different things. So you'll need to learn what your triggers are.

ColleenT
03-29-2008, 06:17 AM
So lovely to hear from you.

I too am 48 years old and my sister has coeliac disease. I know this is also an auto immune disorder but I didn't realise that there was a familial connection.

I have not told my family about my lupus.........yet. My parents are elderly and I don't want to spoil their last years. I've kept my problems to myself so far.........with great support from my husband.

So this support group is going to have to be my little release valve!

sick n tired
03-29-2008, 07:03 AM
Thats what this support group is to many of us...a release valve.

Welcome to the group!

I look forward to getting to know you better.

Karen

Pearl
03-31-2008, 05:45 PM
Hello -

Just wanted to welcome you. I wish you well and hope you find peace and comfort here.

Jana