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overit
09-15-2006, 04:35 PM
Hi all. Thanks for all the posts here - a wealth of information and perspective in this forum! I've had mild SLE so far (skin/joint) but fighting pleurisy now for first time. I'm wondering how you folks know you're heading into a flare. I assume it's different for everyone like the course of the disease in general.

Thanks,
overit

Saysusie
09-16-2006, 04:57 AM
Yes, flares are as different for each of us as the disease itself is. It is almost impossible to predict a flare. Sometimes, the best that we can do is to take precautions in order to avoid a flare.
For me, my muscles begin to burn as if on fire and I get overwhelming fatigue (cannot move!). Generally, when I feel these things, it is followed by a flare which, for me, means mouth ulcers, debilitating fatigue, stiff and sore joints, loss of apetite, and extreme muscle pain.

Hope this helps
Saysusie

vernb2
09-16-2006, 11:23 AM
for me I feel like I am getting a pimple on each shoulder blade....

psalm 56 3
09-16-2006, 11:38 AM
I am just learning to recognize my flares. I too get mouth ulcers and my muscles become very weak. Back in May I went to a tanning salon and tanned everyday for 30 days. When I reflect back, by the latter part of that month I was in bad shape. It has progressed from there and now I have to seek medical treatment. I have noticed that if I rest it makes all the difference in the world.

stardust
09-16-2006, 02:35 PM
for me,

my arms start to burn and I get this thing like electric shock flashes.
It's really hard to explain but the skin burning is the main symptom and nothing stops the burning but ice rags.

littlered
09-20-2006, 11:51 AM
My husband can tell I'm about to go into flare. He says I get more snappish and irritable (well, maybe that's just me :roll: But the first thing I always notice is that I feel like I'm coming down with the flu. Achy all over and I move like I'm under water. Then my face turns bright red in the classic butterfly pattern.

psalm 56 3
09-20-2006, 12:14 PM
They say everyone is different. I am thankful my skin does not burn. That sounds rough. I am like littlered, I get those same flu symptoms. It usually takes me a bit to figure it out. I am much better at it in the summer, mainly because the flu is not prevalent at that time of year. I don't know if it is just me or not, but have any of you had a problem with fluid in your ears?

TracyDawn
09-20-2006, 12:39 PM
for me, the spot on your neck where it meets your shoulders, you know that joint? it starts hurting and swells and gets really hot. then it goes away and the next day or so it hits. That's my warning to clear my schedule. ;)
As for the question about the fluid on the ears, I don't get that often but have had it. I do get ringing in my ears, actually it's like a buzzing sound and very irritating. Took me forever to realize I was the only one hearing it. LOL

psalm 56 3
09-20-2006, 01:12 PM
I get that ringing in my ears and was told it is the following:
What is tinnitus?

Tinnitus is a ringing, swishing, or other type of noise that seems to originate in the ear or head. In many cases it is not a serious problem, but rather a nuisance that may in time go away. It is not a single disease, but a symptom of an underlying condition. Nearly 36 million Americans suffer from this disorder. In almost all cases, only the patient can hear the noise.

stardust
09-20-2006, 01:15 PM
With all the different symptions, it seems as if the hot, burning skin seems to be in almost all??? I wonder why that is, is there any kind of study being done with lupus to catorigize all these different symptoms and find "the most common"??? and go from there??????

stardust

yaya
09-20-2006, 07:16 PM
I usually don't sleep well but for some reason for about a week before a flare I sleep really, really well for a couple of nights and then is all down hill from there. My mouth also gets sore, like my taste buds are inflammed and I get sores in my nose. Also, joints and muscles hurt and the skin on my knees, elbows, ankles and other joints is really hot but I don't have a fever. Strange "condition" we are blessed with. :shock:

littlered
09-21-2006, 10:48 AM
YES, I never really connected it with Lupus before, but I've started waking up with lots of fluid in my ears. (I thought I was just having night sweats and not remembering.) Wow...I thought I was the only one. I have to use Q-tips...
Here's a question...they SAY you're never supposed to put Qtips in your ears...but doesn't EVERYONE? :roll:

psalm 56 3
09-21-2006, 11:22 AM
[i]You have no idea how glad I am to hear that I am not the only one with this problem, I thought it was just me. I do not get ear infections at all, just that pressure from fluid. I do use Q-tips in the ears. My husband told me to pinch my nose with my mouth closed and blow, that does relieve some of the pressure. I wonder if it is Lupus related or just us? Also I have noticed that I get terrible neck aches that follow with a low grade fever. I have never put any of this with Lupus.

stardust
09-21-2006, 12:23 PM
I DO know that pinching your nose and blowing WILL pop your ears BUT
IT CAN ALSO BLOW YOUR EARDRUM !!!!!!!!! possibly leaving you with another whole set of issues!!!!!!! worse than cloggy ears!!!!

NOT a good thing to do :( :( \

Yep, I use q-tips too ! :)