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Koilover512
05-06-2013, 06:56 AM
For the past week I have been feeling horrible. My normal symptoms are joint pain. But lately the joints havenít been so bad. Just some pain here and there like my wrist and maybe a knee. The issue is I feel horrible. I am really out of it, fatigued, a bit dizzy, and nauseated and sometimes my chest and throat feel tight. Could I be going into a flare? I have never gone into a flare......

Shanna
05-06-2013, 07:40 PM
Well I've been diagnosed for about a year now and have had a few bad flares that put me in the hospital. Everyone's symptoms are different, but I notice bad fatigue (like the kind where I can't keep my eyes open no matter how much sleep I get) and my hair starts to fall out, also I'll get mouth sores, and bad joint pain,not controllable with pain meds. Wish you luck and I hope u bounce back fast!

iwish67
05-28-2013, 03:22 AM
Sorry to hear you are in a flare. I am in one as well at the moment. Never had one this bad before. Been 6 weeks so far. Really bad joint pain in all joints especially feet, ankles, knees and spine. It is so disheartening when your mobility goes. They say just rest, not always that simple. I hope you feel better soon. I have no real answer other than get advice from rheumy. Mine is 900 kilometres away makes it tricky. Rest and just hope it finishes soon. Big hugs to you.:laugh:
Keep smiling always.

Jaynie
05-30-2013, 01:18 AM
Hi
Sorry to hear you're poorly (ok, so I know this is a Lupus forum...)
Personally my flares make me feel like I have flu, raw skin is the biggest symptom, exhausted, achy etc. if I'm in the sun too long, my face stings and I feel dreadfully washed out. Hayfever seems to set me off. I've not been too bad this year, but it's England and the sun hasn't bothered to show up (works for me!!)
Everyone is different.

Jx

Koilover512
05-31-2013, 02:50 PM
UPDATE: I went to doctor and she suggested that I start a two week regimen of prednisone. I have always hated the thought of going back on that horrible drug but if it will make me feel better then I’ll do it. The first couple of days of prednisone were pretty great. I was super awake. Prednisone = Crack lol. Once the two weeks were over I started taking the Mobic again. About a week and a half on the Mobic and my chest started hurting. I have had tightness before but never had pain. It hurt when I would breath. I went to emergent care. They took an EKG and a chest x-ray. Found nothing wrong and sent me home. Told me to call my rheumatologist in the morning. I called my doctor in the morning. She fit me in later that afternoon. She thinks I could have fluid build-up around my heart. She took me off the Mobic and started me on Indocin twice a day. I am also scheduled for a 2D echo on Monday. I am starting to feel better. I just hope that the new meds help. If they don’t I will be looking at more prednisone or stronger meds. Right now I am taking plaquenil and that is very mild compared to other meds.

tgal
06-01-2013, 02:38 PM
The one thing I want to remind everyone is that what you feel Lupus doing is nothing compared to what is happening inside. I know the meds sounds scary, heck, are scary, but if you let your body continue to flare the Lupus can do much worse to you than the meds that could help stop it.

believe me, I don't like my meds. I sat for 3 hours this morning in an "I don't want to take you"argument against them (it happens on occasion especially when I am not feeling well, go figure). I took them though because I like the odds of the "possible" complications from the meds better than the "probable" complications from my Lupus

Koilover512
06-02-2013, 07:09 PM
believe me, I don't like my meds. I sat for 3 hours this morning in an "I don't want to take you"argument against them (it happens on occasion especially when I am not feeling well, go figure). I took them though because I like the odds of the "possible" complications from the meds better than the "probable" complications from my Lupus

I do that all time! Lol I put the pill line up on the counter in the morning and the thought crosses my mind....do I really need these? Hmmm lol and then my husband yells at me. He keeps me in line lol

Jaynie
06-06-2013, 12:52 AM
Mari,
I'd kind of forgotten that what we see on the outside is nothing compared to what is going on inside. It's all so hidden. Makes me realise that when I am having a rough day, my body is struggling inside so I need to read the signs and take it easier, giving my body the chance to catch up.
Fr me its about giving myself permission to rest...my usual urge is to fight against it and try to ignore it, tho I'm fixing that!

Have a nice day peeps!
Jx

tgal
06-07-2013, 12:17 PM
Mari,
I'd kind of forgotten that what we see on the outside is nothing compared to what is going on inside. It's all so hidden. Makes me realise that when I am having a rough day, my body is struggling inside so I need to read the signs and take it easier, giving my body the chance to catch up.
Fr me its about giving myself permission to rest...my usual urge is to fight against it and try to ignore it, tho I'm fixing that

Have a nice day peeps!
Jx

Yes, we all have to learn new things. We call it our "new normal". Doesn't mean bad it just means learning to do things differently in order to take care of ourselves.

PJNunn
06-17-2013, 07:21 PM
Good question! I've wondered the same thing. Nobody has ever really explained to me what a "flare" is other than things get worse.

Hollie
08-20-2013, 03:14 PM
I think im kinda in denial too even after 3 yrs. I push myself to the limit then pay for it...like you Mari I need to give myself permission to rest and relax and not feel guilty about it...even though I still do! im still in denial about needing to take ALL the meds the doc prescribed..i get on a kick where I take them regularly then get pissed off b/c im 31 yrs old and am taking a handful of meds twice a day JUST TO MAINTAIN! and I still feel like crap half the time...grr so aggravating...I know im not the only one on here having these feelings and thanks for letting me rant and rave...nice to have people that understand..no one really does unless they have the symptoms...

much love to all my lupie buds

Creekbank
08-20-2013, 05:30 PM
Hollie,

I am the same way as you are. I do not give myself permission to rest. I have 2 children and I am a stay-at-home mom. I also home school my oldest. Thankfully, he is old enough to do most of the work alone, but I still feel the responsibility to look after all he does. My other is 4 and stays very busy. I also push myself to the max and suffer to extreme's. I am in a flare now and about 2 weeks ago was in docs office for heart and lungs. Inflamed to the point all my organs are being affected. With the meds, starting to feel a little better, but still hurt badly. I can also relate to having to take all the meds just to get through a day.

Thanks for sharing and hope you get relief soon.
Creekbank

heather123
09-09-2013, 09:34 PM
Hello,

I am confused.... I thought flare is when your anti DNA antibody comes out positive which means your innards are under attack... Whatever it is (eg 20 yrs ago was my kidneys, now is my cns). Partial remission is when you are still on your meds but no ant DNA present and full remission is no meds, no symptoms, no anti DNA positive result.

However, even when the anti DNA was not positive, I have always had symptoms of some kind and even joint pain, ankle pain, fatigue, .... Etc. except during that time I always had excuses (should not have ate that last night, bad shoes, etc). I realize now that is called denial !!!!

After 20 years I think I may finally not be in denial!!!!

Can someone clarify the flare question?

Thanks!!!

steve.b
09-09-2013, 10:33 PM
my understanding ....... a flare is any time your lupus is more active than normal.

tgal
09-10-2013, 04:34 PM
Steve is exactly right. Our meds can and will alter blood results. Add to that there there is no test for Lupus for a reason. Anytime your disease is more active than usual it is considered flaring when seen in the blood work or not. Too many Drs don't even understand Lupus enough to understand that bloodwork does not tell all. It is why it is so I portent (and hard) to find good ones)

deannegirl
09-11-2013, 10:44 AM
Hi Hollie.

I'm 31, a mom of an 11 year old, a 45-60 hr a week business professional, leader of a Lupus Meetup Group and I never want to admit that I'm sick. Every time my symptoms subside I go full speed ahead with work and commitments. Then the second a flare starts to creep in I get so pissed off at my body and at life for dealing me this crappy hand I want to scream! I'm right there with you girl. Forget the bloodwork. I've had really bad bloodwork and felt fairly okay, and then I've had perfect bloodwork and felt like I was going to die. All I can say is, the bloodwork and our symptoms do not always align, and the pain and inflammation we experience is hard to measure in real-time. Hang in there and just know you're not alone. X