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New Member

Date Joined Feb 2011
Total Posts : 1
   Posted 2/25/2011 10:05 AM (GMT -6)   
Of course many of us look up these vague symptom for years looking for relief and a diagnosis. For me , I had severe leg pain for years and then body aches. I now have the butterfly effect I call it. It looks like a sunburn that comes and goes on my nose and cheeks. There are good days and bad days and the fatigue sometimes gets so bad that I don't want to make plans ahead of time in case I feel like ----. I am on Plaquenil and Tramadol but my Dr has not diagnosed me with Lupus yet because although my ANA is positive it is not high enough yet according to him so they are calling it szrogens. I work full time and some days feel good and some days I dive on the couch when I get home. I exercise all the time spinning yoga and regular stuff and I eat very very well. How do all of you work and try to act normal when symptom get bad???? I am pretty sure it is LUPUS.

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 2/25/2011 11:21 AM (GMT -6)   
Dear rnbear61,
Just wanted to say welcome to the forum.  First of all, I don't work, but I do understand that many individuals here do or have and have had to change many parts of their lives to adapt to the disease.  When your symptoms get bad, there is no acting "normal".  The fatigue is a big part of it for some.  Like I said, I didn't work, but I was very active with my kids, president of the PTO at their school and was always going 240.  When my disease started to progress, I realized that I had to eliminate the stresses out of my life, and take care of me first, or I wasn't going to be there for anyone in the future.  Once I did that, everything started to quiet down in my body.  Rest, Rest, Rest was the key.  I know that may not be always an option for you, cuz you do work fulltime, but let me give you this warning, if you don't listen to your body and what it needs, and you push it, your disease will progress.  Don't try and pretend that you are okay on the days that you aren't.  It sounds like you are trying to do the best, by getting exercise, and eating right and that's important.  How long have you been on the plaquenil?  I have found that this has been the best drug for me, and has been keeping the disease quiet for the most time.  But it took me about a year before I really felt it was doing what it needed to do.  Hope this helps in anyway.
Hugs and angels,
DX - sle and carpal tunnel
RX - plaquenil, prednisone, lisiniprol, etolodac, folic acid, tramadol (as needed), hormones, and lots of vitamins
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