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Author Topic: Anyone here have lupus as well?  (Read 1532 times)
Lillupie
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wedding 12-10-11

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« on: March 19, 2010, 09:09:18 PM »

ok,
 Here is my situation. At the age of 16 I was diagnosed with lupus. I have pretty much have felt great until about last September. THis is even with dialysis. I started dialysis almost 3 years ago. My dialysis labs are great, but my body hurts. I am soo tired, that there are just days that i can even keep my eyes open, my legs hurt when i move them much. My arms and shoulders and sore and just feel really weak. I also get out of breath really easily, and I am not hypertensive (my bp run normal to low side), nor do I have fluid on. I am just so exhausted. Witin the last year I can count getting unexplained fevers 3 times for no reason at all.

So today I go and see my rheumatologist. He didnt know what is wrong iwth me. He claims that lupus is really inactive when you are on dialysis?!

I dont know what to do. My Kt/v is above a 2.0, and that is without doing a midday, and now i am doing a midday regularly, and i still feel this way.
Does anyone else feel this way? Or what should I do?
Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
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