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View Full Version : Looking for advice/info...first signs of a flare?



SleepyInSeattle
12-05-2011, 08:17 AM
I know everybody is different, but I am trying to teach myself to be able to identify the very earliest signs of a flare, so I can try to get extra rest and take some anti-inflammatories and generally try to nip it in the bud. i am hoping that by doing that, I can lessen the severity and duration of flares.

I went many years before diagnosis just being clueless and drinking coffee and trying to push through when I felt cruddy, and probably damaged myself in the process...so now I am trying to take care of myself instead.

So my question is...what should I be looking for? I want to catch things as early as possible. I know not everybody's symptoms are the same, but I am hoping to find some commonalities to help guide me.

Thank you so much, and I hope you're all having GOOD days today!!!! :)

rob
12-05-2011, 09:23 AM
Hi,

Like you said, people are different, and no two cases of Lupus are the same. However, I've noticed in my time here that there are some definite commonalities many of us share.

For me, the most frequent and sure fire sign that I am going into a flare, is mouth sores, and neck pain. I get sores on the roof of my mouth mostly, and they start tingling and burning a bit before they totally break out. The neck pain I get is a line of pain up from my right shoulder into the back of my head. Turning my head hurts, and it makes sleeping difficult.

Another sign that I get maybe 50% of the time, is a burning itch that seems to come from the inside, under the skin rather than topical like a bug bite or sunburn feels. I get it mostly on the fronts of my thighs. It's a maddening kind of itch, like hot needles from the inside.

To try to head off the flare before it gets really bad, I load up on NSAIDS-mostly Naproxen Sodium, which is sold under the brand name Aleve. It can be hard on the stomach though, so I always take this med with food, like bread or crackers. I use a Steroidal Cream for the itching on the legs, and I use topical anesthetic for the mouth sores. The mouth sores are really the worst. The anesthetic only numbs the area for a short time, and the stuff tastes awful. Eating a slice of toast feels like munching on broken glass. OUCH! I end up eating soft stuff, like yogurt, and ice cream (not a bad thing).

I also try to avoid the sun completely if possible when a flare starts, more so than I usually do. Of course, plenty of rest and avoiding stress will make a big difference as well.

Hope this helps,

Rob

ETA-I forgot to mention my other definite sign of an imminent flare-Cognitive Dysfunction, AKA Brainfog. I get a distinct effect in the form of overall forgetfulness, a decrease in my ability to spell and formulate a sentence, and an inability to communicate face to face or on the phone-I just draw a total blank.

It's rather ironic that I forgot to mention how Brainfog makes me forgetful.

Hunniebun
12-05-2011, 11:18 AM
I feel bad for you Rob, I think I've only ever had one mouth sore and it sucked, I hope they don't happen again.

For me, I always know a flare is coming when I am very stiff and swollen. My hands are usually the first to swell and they stay that way for a while. I also get bad pain in my neck that also starts from the shoulder and goes up the side of my neck and into the back of my head, and then a big headache starts as well.
I think you'll know its coming or its there pretty quickly. Lots of rest is always important either in a flare or out of one anyway.

SleepyInSeattle
12-05-2011, 01:23 PM
THANK YOU!!! That helps a lot...keep 'em coming!!!

I also really appreciate the advice on how to help reduce the severity of the flare...taking Naproxen, etc....I know rest helps, but I always wonder if there's anything else I can do. It seems like one of those things that if I can identify it early and really keep on top of it, maybe things won't be as bad. That's my hope, anyway...

Thanks for the great info...

Mica
12-05-2011, 06:35 PM
Like they said it's all different, like in a couple of years you will probably be able to pinpoint certain symptoms of a flare. Like for me my appetite diminishes, and will only crave toast with honey. Weird and specific but after almost 7 years I was able see that and stop severe flares. Headaches, joint pain and swelling, loss of appetite, and I get really weird dreams if a flare is coming for me.

debbie-b
12-06-2011, 05:58 AM
Mine always start with diarhea, after that the joint pains get worse, my skin or better tissue right under the skin hurts so much, that my husband can't touch me. And like Rob said the brain fog, when I flare, I can't put a sentense together, well none that make any sense. Oh yeah, not to forget the muscle pain and headaches.
But it always starts with diarrhea for me.

Debbie

BonusMom
12-06-2011, 10:11 PM
Although I've been diagnosed since 2008, I'm still learning when a flare is starting.

I've got a mouthful of ulcers, I'm exhausted and my feet are burning with pain. I've got to call my PCP and ask for labs to be drawn as I suspect I'm in the beginning stages of a flare and want the labs to support it, and get some treatment.

It's a guessing game.

jmail
12-08-2011, 07:18 PM
mica - Honey on toast... and I'd always wondered why the cravings... now I know... lolol

Anyway, every flare is a bit different for me, but most start with a "feeling", which is probably the brain fog coming in, but my brother who has epilepsy also describes an "aura", almost deja vu. Painful feet and having to put them up, mouth sores, etc., but probably my most common "early warning symptom" is a bad case of dandruff the day before, then all sorts of little scalp sores the next day. Almost every time.

red246
12-15-2011, 06:55 AM
Definitely brain fog, my hair starts falling out more than usual and my scalp itches. Those are my usual ones. Sometimes though the predecessor to a bad one coming is my period is late or just doesn't come at all. I've had my hormones checked and they are fine. There have been several times where I thought, would have SWORN, I was pregnant - had all the symptoms. Nope just stupid mr. lupus rearing his ugly head! I also get the, can't think of the name right now, splotchy/fishnet rash all over my arms, legs, and torso.

StephK
12-18-2011, 06:20 AM
This is still pretty new for me, but I actually had a revelation this morning. For the past couple of days, I noticed that my rash on my face was getting more pronounced (more red) and then yesterday, the joint pain ramped up, especially in my hands and ankles. Ugh. Merry Christmas.