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View Full Version : Trying to understand flares



wendya432
07-04-2012, 07:09 AM
I hope this is the right place to post this, please move it if not.

So, I'm trying to figure out these flares. When you have a flare, how long does it last? How long do you go in between flares? Between flares, do you feel good, have no symptoms, or it's just more mild?

Looking back I can pinpoint times when I had a flare. The first one I can remember was awful and I had no idea what was going on, I thought I had a virus. That was about 5 years ago. In the past year they've been much more frequent. Every time I get dental work done I have a flare, every time I'm sick I have a flare, and recently I had coxsackie virus and had a huge flare. This is what brought me in to the Dr. lately and what led me to research Lupus. Since then I've been feeling my worst ever. And I feel like I'm constantly having symptoms. Although I'm not sure if it's a flare or not?

Basically I have had joint pain constantly for the past 5 years or so. I have nose sores, and sometimes mouth sores that come and go (not sure if they always come when I have a flare or not, but always when I'm stressed or sick). I've always been sensitive to the sun, but just starting recently I feel like anytime I'm in the sun I feel awful and I recently got a sunburn that won't go away after 2 weeks and left me peeling with sores. I think I get a malar rash randomly. Usually anytime I spend time in the sun or after my shower it is noticeable for about an hour. But when I'm in a big flare it's always noticeable. There is always something going on with my kidneys (started after getting HELLP syndrome after delivering my 2nd 5 yrs ago), but never officially diagnoses with kidney disease or anything. I pretty much always have some type of rash (usually on my thighs and rear-end, how nice and embarrassing!). My brain fog is getting worse all the time,, I'm always tired, etc, etc.

So, what I don't get is, do all these things happen with a flare? Or do we always have something going on and the flares are just when things are really bad? Like right now, my joints hurt, I'm short of breath all the time, I get bloated and my stomach hurts every time I eat, etc, etc. BUT, I don't have any nose sores or head sores. I have my usual fatigue, but I've had more energy than usual. I don't feel like I'm in a flare, but I still feel like crap, know what I mean?

So does Lupus just jump around the body all the time and it's always noticeable? Or am I always in a flare??

Hope this makes sense what I'm trying to figure out!! :)

debbie-b
07-04-2012, 07:26 AM
For me, it's like this. I have joint and muscle pain all the time, some brain fog, painful skin( no rashes), fatigue, shortness of breath, swollen joints in my fingers, you get the picture. The painlevel is usually at 5, daily.
When I have a flare, everything is much worse and the painlevel is at 8. The flare lasts sometimes for days, sometimes for week,s or months. It's different for everybody, but after a while, I was able to tell when I am in a flare.

Debbie

jmail
07-04-2012, 04:18 PM
Everything about lupus seems to ebb and flow, whether it'd be what gets attacked, how severe it might be, how long it lasts, what triggers a flare, etc. It can be very frustrating coming to terms with your body's limitations, and it's a seeminly constantly moving target. I've been dealing with the symptoms for over 20 years. Every year or two, I seem to add something new to the mix, but I have had some marvelously long periods of time with no serious issues. My main thing seems to be the inflamation. If I keep the inflamation down, then my other symptoms aren't as strong. I can also usually gauge the severity of an oncoming flare by it. A good doctor and a patient who pays attention to their body's reaction to various "input" (environment & drug stuff) are very important.

Unfortunately, there are no hard and fast rules with this... Except I stay out of the sun anymore, and if I have to go out in it for some reason, "coverage", which includes clothing and sun screen are mandatory, else my body will rebel, within minutes sometimes. Even some flourescent lighting can cause me issues. I will have the ocassional day where I don't remember I have lupus hardly at all. Minimal pain, minimal joint swelling, etc. Then there's days where it's tempting to think about just getting it over with. Most of my days are between the two extremes, with more of what I call "good" days than not. However, my "bad" days have gotten worse and more frequent at this point in time. I had one flare last over 7 weeks recently, but we're thinking it was helped along by a reaction to an antibiotic. But I've had a period of time of about two years where I was practically asymtomatic over 6 years ago. No one said I had lupus tho until just over two years ago now. Sorry to sound "non-commital" with my reply, but that's the nature of the beast.