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Lupus
How am I feeling with this battle?
To soon to tell - 0.0% - 0 votes
I'm feeling much better - 11.8% - 2 votes
holding my own - 41.2% - 7 votes
I feel I am going down hill - 47.1% - 8 votes
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Posted 2/4/2009 4:30 PM (GMT 0)
I was wondering what ever symptoms came up that brought you to this forum do you feel like you are better, worse, holding your own? 
Posted 2/4/2009 10:19 PM (GMT 0)
Hey Carol,

 

I would have to say my Lupus is better, but my Fibro is worse. Much worse. I guess my vote would be "holding my own".

Posted 2/4/2009 10:51 PM (GMT 0)
Carol,

With a few new symptoms recently and possible flare I feel like I've gone down hill a little. Hopefully I will come out of it soon and start feeling better!
Posted 2/7/2009 8:54 PM (GMT 0)
I'm a new person. The forum helped me so much in several ways. it was good to connect with people who knew how I felt, and you folks answered so many of questions and helped me deal with the issues that we face with when diagnosed with a chronic illness. I believe that finding a good rheumy who's willing to help me with my meds has been helpful, as has my acceptance of this condition and the desire to separate "me" from my disease. I'm determined to come out of this, and hearing Bill's story, and seeing his positive attitude, makes me believe that it's possible.
Posted 2/8/2009 5:03 PM (GMT 0)

hey Carol,

I thought about this for a few minutes.  i wish I could at least say that I am holding on.  but just came out of flare that lasted a few days.  and plaquenil is not keeping the sores in my mouth like it used to.  But felt better this morning.

I am having some problem seeing this morning.  will see the rheumatologist tomorrow. and schedule an appointment with the eye doctor.

but I have to vote that I feel I am going down hill.  all of you are wonderful people, and glad I found you, but not really holding my own at this time

Hester

Posted 2/8/2009 6:12 PM (GMT 0)
According to all my bloodwork - ANA & inflammation markers & such - I am doing much better than when 1st diagnosed. And some days I feel better than then, but some days I feel as bad, but in a different way. At first, I could sleep hours & hours & hours & still feel exhausted & could fall into a deep sleep instantly. (So they want to tell me the Lupus is in remission.) Now, I feel tired but not sleepy, it's more all over muscle/joint pain that keeps me stiff. Somedays it skips over into all-over *pain* rather than ache....never had that before, they are muttering "fibromyalgia" at me but I'm not listening very well. Haha!
Posted 2/8/2009 9:21 PM (GMT 0)

Same here Lynnwood, I am so exhausted here lately, somedays I can barely hold my head up, my rheumy tells me it's from the fibro rather than the lupus. I am not sure which it is, but I know somethings got to give. I have had lupus for over 12 years now and this is by far the worst I've felt.

Melissa

Posted 2/9/2009 1:05 AM (GMT 0)

I can't believe how many of you have Fibro. I am so sorry. That is one thing I don't have thank God. I feel so bad for all of you. I can't imagine. Thanks for answering the post.

Posted 2/9/2009 1:29 AM (GMT 0)
I also feel like I am going down hill...all my bloodwork and tests also prove that I am going down hill. I have been exhausted....go to bed about 9 or 10 wake up at 11...help roomates make breakfast and it flat out wore me out so I went and took a nap...a 3 hour nap. Then woke up and went to Target, couldnt finish shopping because I was so tired. Went home and took another nap, woke up at 5 and now its 8:30 and I think I am ready for bed. Feel like all I do is sleep. I am dreading work this next week. I don't know if I will be able to make it the whole day. When I was first diagnosed I wasnt near this bad...I don't know how many of yall know the spoon theory at butyoudontlooksick.com....that is what I have to do now. Plan my spoons out for the day!

I just keep praying that things get better soon! All of you are also in my thoughts and prayers and I am so greatful that you are all here and thankful for all the helpful advice! Without you guys I don't know what I would do. Thanks for helping out a "new luppie"!
Posted 2/9/2009 1:58 PM (GMT 0)
Hi Carol. I'm holding my own. As most of you know, this past summer I could only walk with my walker, couldn't climb the stairs in my house, and became so weak I couldn't bathe myself. So although I'm often in lots of pain from the lupus and fibro, spend lots of time in bed, have chronic diarrhea, and complain often to all of you (thanks guys), I'm better than I was and that's great. Gotta run to the bathroom! B

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