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How do you know about internal damage after flare?
1stLadyDi posted:
I've only been dealing with my condition for just over 2 years. I am really curious as to how you know if you experience any damage to any internal organs after a flare barring having tests run? I mean, you can experience a flare and see and feel the affects in different areas all over your body. So, when it's all said and done, how do you know that any and/or which organ experienced any damage(s)? Or, do you just assume there's damage, schedule a doctor's appointment, and ask for tests to be run? I would really appreciate any responses that may be of help.
lupylisa44 responded:
Organinvolvement does not happen to everyone with lupus. So you can't just assume you have organ involvment after a flare. Many times organ damage is undetectable without having blood or other tests run. It is always a good idea to se a doctor on a regular basis so he/she can detect any changes in your bloodwork.

With love, with patience and with faith, we'll make our way.
mommawithlupus87 replied to lupylisa44's response:
Like Lisa said I know I have gotten organ damage on my kidneys and I know with this flair my CBC (complete blood count ) was way down ... I get blood taken sometime 2 times a week others once every two weeks . for my kidneys I was getting a nice orange jug to collect my pee for 24 hours . But they start off with blood work and react to what they see I have also had X-rays of hands and such . it doesnt hurt to ask your dr if you think somthings not right .
1stLadyDi replied to lupylisa44's response:
I'm not assuming anything. I'm asking how would anyone know? If it had not been for finding out that I, evidently, experienced some organ damage (lung), after a previous flare, unbeknownst to me at the time, I wouldn't be asking the question. It was because of keeping a medical journal, new symptoms, monthly visits to my rhuemy, etc... followed by chest x-ray & cat scan that the discovery was made.
1stLadyDi replied to mommawithlupus87's response:
CMNava replied to mommawithlupus87's response:
hello- did you feel your kidneys hurt from the outside. Like your middle back?
mommawithlupus87 replied to CMNava's response:
I had no pain at all in my kidneys I have never had trouble as far as pain or not being able to urinate or anything but had damage done .... the biopsy they took now that HURT as they gave me nothing to deal with it because then it would be filterd by my kidneys no meds after either . not somthing I want to do again but just know I will have to
CMNava replied to mommawithlupus87's response:
why did they decide to do a biopsy? They told me i had a kidney infection and i was on meds for 10 day and I still hurt. I am courious to see how people found out they had lupus. my blood work seems to be normal.
mommawithlupus87 replied to CMNava's response:
I had blood work and also (dont know if you have seen it yet orange pee jug )you have to colect your pee for 24 hours . I did this many many times all comming out with protine I think I was 17 at the time . so I dont recall everything I wasnot active with my lupus till last year when I had a flair ( in my mind I was healthy 100% of the time ) Sorry Im not much help with it
1stLadyDi replied to CMNava's response:
I have & unfortunately, when addressed with my primary care doctor, she wrote it off as being caused by the duty belt I wear (I work in law enforcement). I disagree, though, as I've been in this line of work for over 10 years & never had a problem until recently. The throbbing pain radiates from the middle of my back, on each side of my spine, & proceeds outward. Strangely, though, these episodes occur spontaneously and tend to last up to 60 seconds at a time. It's still an unresolved issue as it goes away only for a season.

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