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June 15th, 2011, 05:55 PM
EmG EmG is offline
Super Mommy
Join Date: Aug 2010
Location: Reno, NV
Posts: 767
Hello! My name is Emily too and I have lupus. I began having symptoms after my second son was born. Unlike you, I have never had a blood test come back positive for lupus. However, I also have lupus nephritis and that was confirmed by biopsy. I have noticed how sometimes I will get hormonal flares. But I also get flares from other things. It really depends on the person with lupus. If I go out in the sun, I get fevers, fatigue, rashes, and joint pains. (A pain in the bum in the summertime, especially when my boys want to spend hours each day at the pool!) I also get flares from stress. Whenever I'm around my extended family for long periods of time, my kidney disease gets worse. It's funny how that works. Now I live 11 hours away, and my kidney disease is in full remission! But when I lived with my mom it was bad enough to need chemo. (Even with the chemo, it didn't get better until I moved away!)

I have learned my triggers and try to avoid them as much as possible. Even without the triggers though, I have to be on some meds to keep the joint inflammation down. Plus I have nerve damage, so I take meds for that too.

Did your doc start you on any meds? Do you have a rheumatologist? I have learned that it is important to take charge of your health care. I keep a file of all labs and test results. I have 3 specialists, and my regular doc that knows me real well. (Sometimes I wish they had a frequent flyer program for doctor visits!) For some people lupus remains mild their whole life, others it attacks vital organs. That's why it is important to have regular visits to check for things that are happening that you may not feel.

Auto-immune diseases are sucky to have, and chronic and will never go completely away, although you may have periods of excellent health.
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