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Posted 10/5/2010 11:38 PM (GMT 0)
I just found this support group. I hope you dont mind my just jumping in..

I was diagnosed with lupus 8 months ago. I was diagnosed after suffering from eye problems, I had swelling and a spontaneous corneal tear. I also had hair loss, and swelling in my joints, as well as feeling very very tired and  weak.

I suffer from very dry eyes and mouth and blepharitis.

I have been on and off the usual treatments, but have just got worse and worse.

I now have swelling in my salivary glands, a LOT of swelling. The doctor (rheumy)  thinks it is the lupus, but I have to go in today for an ultrasound to see if it is cancerous as apparently that is a possibility.

I have children who are still very young, and I am really worried and upset, and I really really seriously feel very unwell indeed.

I also get random fevers which the doctor doesnt seem to attribute to the lupus. Does anyone else get these?

Im sorry Im complaining, its just that noone in my family seems to understand just how unwell I feel.

 

Posted 10/5/2010 11:46 PM (GMT 0)
I get fevers as well.. My doctor always ask me this when i do a check up..So i guess it is related to me having lupus.


Also. lupus can be treated. Its not a life sentence. Won't you be glad to finally know what is causing you to feel so unwell. I am not wishing anything on you.

I really do hope you get well soon as well as I hope you dont have lupus. But that can just send you into more test etc to figure out what you actually have.

Goodluck tho..keep us informed.
Posted 10/6/2010 12:13 AM (GMT 0)
@kuma you've definitely are in the right place to vent and ask questions... we can all relate to each other in some way... It is very hard for many people who haven't been exposed to what lupus is to understand us, since most times we all look fine... Someone on this site actually gave me great reference for a way to better explain how we feel to others... the spoon theory... go on www.butyoudontlooksick.com. This site was very informative. I have dry eyes myself, i'm not too sure if its due to the lupus but I do have retina holes which i am getting lasered later this month, I am on artificial tears for the dry eyes... I also us contact lenses so I don't know if that's a contributing factor to my dry eyes.
Good luck and keep hanging in there!
Posted 10/6/2010 12:57 AM (GMT 0)
fevers are a lupus symptom. May I suggest The Lupus Book by Dr Wallace for self education and perhaps those closest to you to read and learn more. Lupus used to be a death sentance but today we can live full lives with proper treatment. The importnat thing is to listen to your doctor. Plaquenil takes months and months to work full (up to a year with some people). Prednisone is really the only instant medication. Oh and make sure your doctor is a lupus expert and a rheumy not all rheumys are lupus experts.
Posted 10/6/2010 11:12 AM (GMT 0)
Hi,

I was diagnosed 8 months ago now, so I have my lupus diagnosis, Innocent .

I had another set of tests today, I dont read Japanese very well (Im australian), but they are doing the ana again, and a dna test?


The tests today were to see what was going on with an enlarged salivary gland. I am in Tokyo, japan, so things, I presume are a bit different here. They still havent ruled out today with the ultrasound that it isnt cancerous, so i have to go back for a biopsy on Saturday.

I am really not getting much relief from the symptoms with prednisone and the antimalarial. I have never felt so tired and sore and weak. My hair is falling out and leaving bald spots, ive arthritis in my joints. I just HURT.

Now I have these swollen nodes in my neck I also cant swallow very well. Its just test after test.

It so hard when people dont understand just how unwell I am feeling.
Posted 10/7/2010 3:56 PM (GMT 0)
AWWW ((HUGGS)) We know how unwell u r feeling... We can relate totally to what you are going through.

But think of it this way, the test will hopefully shed some light on what you is going on with you and hopefully you can be treated and be relieved of some if not all of ur symptoms so that you can be happier and more comfortable with ur life.
Posted 10/8/2010 2:43 AM (GMT 0)
Good luck Kuma we are all praying for you... I am so sorry that you are feeling so rotten. I know how hard it is to stay positive when you are just plain sick all over and can't find relief. Here's a BIG hug to you.....!
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