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Thread: How long do "flares" last

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    Default How long do "flares" last

    I'm pretty new to this whole thing and still as yet undiagnosed, but I know that I have some type of auto-immune thing going on.

    Keep in mind that I take none of the medicines that most of you are taking, I've just been medicating with Lortab's left over from my surgery and some Flexeril that I had leftover from something else late last year. I'm still working on getting to the Rheumotologist to get a diagnosis, but ibuprofen and tylenol just don't work anymore.

    Anyhow, I'm just curious how long flares usually last? I feel like I have been in a constant flare since I had minor surgery to remove a lymph node on March 8.

    Thanks,
    Susan

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    Hi Susan,

    Welcome to WHL. I was diagnosed with SLE in 2004, and in that time, my flares have been fairly predictable. For the most part, my flares have been constant, only varying in intensity. Every three to four days, my symptoms will mostly go away, but not totally. And then for the next three to four days, they swing back and become fairly intense. However, recently I had a period of almost two months where I was totally flare free. This was a first. I don't know the how or why of it happening, but it was a couple of damn fine months for me!

    My flare symptoms are fairly common ones. I get joint pain, fatigue, mouth sores, and brain fog mostly. Anyway, being "in a constant flare" can, and does happen. I hope you can find the answers you need ASAP. Being in diagnostic limbo is no fun.

    Rob

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    Hi and welcome to WHL! You are asking a difficult question and I am not sure there is a correct answer. Each person's flare is different and acts differently just as each persons Lupus or Autoimmune disease is different thus making it so hard to diagnose. As Rob said there are times when I hardly notice it even though it is not gone because it has gone way down. Then there are times like the last couple of months when it is like a two headed monster attacking me from every angle.


    It all depends on what meds you are taking (if any), how much sun exposure you have, and a host of other things that you will come to learn affect you. Sorry I was no more help but I am glad you are here with us. Hopefully we will heave better answers next time!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hi Susan,

    Welcome to the WHL and nice to have you with us.

    We all suffer in different ways with flares as a large majority of us have over lapping auto-immune diseases beside A1 diseases.

    Could you please tell us more with what your going through and suffering for it to be a flare, then we can help even more.

    ~Hugs Terri~ xxx

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    mine is about two weeks and that is without any treatment

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    Hi Susan,

    How are your flares now since asking?... myself regarding the SLE are unpredictable like Rob but refering rashes they can go as long as 2wks onwards, you just never actually know where you are when flares start so try and bare with it even though it's hard, your actually on a Roller coaster ride waiting for it to stop.

    Hugs Terri xxx

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    Hi Maryalice,

    Sadly 2 weeks doesn't sound unusual. Like I said, a Flare is simply when the disease is acting worse then normal. There is no "normal flare" it is just a time when your symptoms are worse then the rest of the time. A flare is not a symptoms but a word that describes a bad period of time with your disease. I do hope you get better soon
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

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    Hello Susan,

    How have you been coping lately refering your flare/flares, please keep we updated please. xxx

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    One of the things I HATED about my old rheumy and about all the information websites out there; that made my lupus HARDER to deal with; was that they all state lupus goes through periods of flare and remission. Their descriptions made it sound to me as though sometimes you would feel like a normal healthy human being and then other times you would break down and become totally sick.

    For ages this made me feel like I didn't have lupus and my meds weren't working because I NEVER felt normal.

    Being on this forum and having real life experience with lupus now... I know that the idea of flare and remission is not completely accurate. While intensity and length vary from person to person... it is best to look at your lupus like this.....

    Remission: You will always have lupus... every single day of the rest of your life.
    I know that sounds bleak, I am sorry : ( But it is reality and its best to absorb that and deal with it and work your life around it... for years I could not accept I had lupus because of a false portrayal that people with lupus go weeks, months, years without lupus symptoms. Its just not true and a dangerous portrayal that had me going off my meds which set off terrible flares. Accepting lupus is a part of your life is essential... As tgals signature says Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections."
    What lupus means to you will vary, for me it is varying amounts of joint stiffness and pain, head aches, dizziness, nausea, fatigue, weakness and brain fog. These occur to varying degrees every single day of my life, with the occasional day where everything is so low grade I can almost feel like a human if it werent for fatigue and weakness. Sometimes I will have terrible days as well but I don't lump them into the flare section too hastily. My digestive tract has also slowed to near not working, I have autoimmune thyroiditis and now tremors. People make lupus out to be not such a big deal... maybe to keep from scaring newly diagnosed... but I think it just helps to confuse.

    Flare: There will be periods when you are hit by the flare truck. Again everyone is different and people can even have varying degrees of flare within themselves. For me, a flare runs alot like a bad flu at around two to three weeks. If I take care of myself a flare may only last a week... but generally having a daughter and a man child (my partner lol) makes taking care of yourself tough. When I get a flare, getting out of bed seems impossible, my joints are so sore and stiff, but what really stops me is a dizziness/vertigo and an unreliable ability to control my muscles/body... this makes driving impossible and dangerous. For many years I have been in a kind of denial and have not had regular specialist care... so as far as what organs may be affected during a flare for me, I wouldn't know. I recently got a good GP and she is investigating me current condition.
    Not seeing a specialist regularly and being monitored by a competent doctor has probably led me to this point in time where my health is on a rapid decline : ( never let it get like this, I am a fool.

    I don't know if that was any help at all, I hope I haven't depressed you. It is my strong opinion though that you need to be given a good dose of the reality of lupus from the start so you can intelligently manage your symptoms to the point you can function in a near normal life. Staying on your meds and visiting your specialist regularly is important and by doing so you can control lupus to a point that it isnt such a horrible burden.

    Dont ever let someone lull you into a false sense of security though. My old rheumy used to say I was lucky, I had a very mild case of lupus (he told me EVERY appointment while ignoring my questions about why I had spark like feelings in my head). He could not have known that, there is no way to know that. My lupus almost killed me and today I can not eat normal food and my head embarrassingly wobbles and twitches.

    Always be vigilant and you will have a long happy relatively healthy life. : )
    Last edited by giggle; 05-28-2011 at 05:47 PM.

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    Ironically my boss and others ask me if I am better now. Its hard to just say you will never be better. I just say I am better now and nod and smile and give them what they want to hear.

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