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karenboss
01-26-2010, 04:07 PM
Ok I think I am starting to peice this together.

Here's my story -

I went to my primary because of joint pain and my sister encouraged me because she has RA (the point being I wasn't dying) the dr ran the ana tests and it came positive with a positive ds DNA - this was about a year ago. I developed mouth sores in the spring and summer, on and off and mild joint pains now and then (some times pretty painful but short in duration) and scalp sores, a few skin sores.

then I think I expereienced my first 'flare' but am only now calling it that. I spent the labor day weekend doing yard work, was in the sun two days, the following week was miserable, dry eys (couldn't see, couldn't oopen them, very sensitive to light - it was rediculously debilitating), also, GERD flared up, couldn't eat, lost 10 lbs, thowing up and the trots, then I develped a cough and breathing pains. All of this was in early September and I sought treatment and little by little things were brought under control, by December 1st I was feeling much better and eating almost normally.

Now I feel almost great! I'm not on plaquinell (taking a break because of the ear ringing) I have only a few small sores in my mouth and scalp -

now, I read that it is common to experience 2-3 flares a year. Is that consistant with you're experience? And do they usually last about six weeks?

Also, when I flare again will it be the same way for me? Dry eyes, GERD, asthma (or whatever that was)? Or can it be completly different. I guess I mean to ask not what will it be for me but what is it for you, do your flares always start out with the same symptoms?

bunnie
01-27-2010, 07:16 PM
Hi Karenboss,
I'm still undiagnosed, but lupus is in the running for me... I had my first big flare last spring after having my baby girl. It lasted about 6 months. Felt better for about 2 months, then had another... was feeling better for about 6 weeks, and now I just started another earlier this week.
Mine usually start with headaches, joint pain and stomach pain. I hurt from fingers, to toes, to tip of my head right now. I was making dinner tonight and my fingers felt like they were being stabbed with needles. (this was a new one for me, but my fingers weren't blue... just cold)
Of my three flares lasted from six months at the longest, to 2 months this fall, and now I just started again.. really hoping this is quicker.
From what I have read on here, flares can vary so much from person to person, and even flare to flare. Symptoms can change, and triggers can change too. My biggest triggers that I have noticed so far are flourescent lights and solar glare off the snow.. (I am in Michigan) I can't have the curtains open in the daytime if there is snow on the ground.. headache will ensue...
My rashes are constant and I still haven't found a way to make them lessen. But, I see my rheumy again next month, and hopefully something will come of it!!
Hope you continue to feel well..

mountaindreamer
01-27-2010, 08:22 PM
hi karenboss,

nice to be in touch again.

I have learned the signs of an oncoming flare. I get a little (some people would probably disagree with "little") irritable, and my mouth gets strange feelings. My tongue feels like it is swollen, and the inside of my lips feel like they are chapped. I usually have about a week of signs before the flare hits. I can't tell you how many flares a year i get. I get a few that last for weeks, then i get several a year that only last a couple of days....i don't get any forwarning of the shorter flares. And then sometimes, i feel like i am in a perpetual flare. I take plaquenil and mtx, along with a cup full of other things. I am still learning how to live with this, but at least i am not surprised when the flares come along. My daughter and boyfriend usually pick up on the signs before i do.

Faith
01-27-2010, 09:55 PM
Hi Karenboss,

Sun exposure, flourescent lights, dehydration are triggers along with a couple of other items on the list. I can't determine when they are going to occurr or how long. I am sorry I am not much help.

laurid8967
01-28-2010, 06:32 AM
Hey there Karenboss -
When I first began to get sick, my flares would be every several months, lasting a few days. As time went on, they happened much more frequently, and lasted longer. Currently, I would say that Im in a flare more than not, I had a great run last year from end of Sept til mid-December - AWESOME! But I would say that I alsomst always have fatigue, joint point, muscle pain, etc and then I get more serious flares ON TOP of that (the last three affected lungs, kidneys and CNS - respectively). As someone said, flares are very individualized and can vary from one every five years, to a continual-type flare.
Does that make sense? LOL - Its great youre still able to work and such - Ive been unable to do that since the beginning of 2008. But overdoing it can set my body off terrible. I think the best we can do is avoid the triggers, take care of ourselves and listen to our bodies if they need rest and de-stressing.
Hope this helps!
Lauri

laurid8967
01-28-2010, 06:38 AM
Ooops -
I know a flare is starting RIGHT when I open my eyes - head feels like its swollen like a balloon, eyes swollen, brain fog and my whole body feels tight and swollen. My hubby only has to take ONE LOOK at me and says, "Youre sick, honey,huh?", as my face is swollen and butterfly rash is REALLY red, not just red..lol THank God for perceptive hubbies!!
Lauri