Lupus Flare?

I keep hearing about people being put in the hospital for Lupus Flares. What exactly does that mean. I'm scared out of my mind. I have been so sick at times I wish I could die but I would of never gone to the hospital. People keep telling me when you have a flare. What are they talking about. I'm always sick, I'm always in some type of pain. What in the world could happen to me to where I would need to be put in the hospital. How do I know I'm having a flare? Once again I'm told there is something wrong with me but all I'm hearing is confusing and I feel like no one is giving me straight answers.

The more I read about what others go through the more afraid I am. I feel like it's doing me more harm to read others stories then good. I know I'm not alone and I am grateful for that but there are so many much more horrible stories of what other people have endured. I am so afraid that is going to be me one day.

Years ago I was told I had IBS. I was so upset. I knew there was nothing anyone was going to be able to do for me. All the crap they tell you to try to help doesn't work. I have done it all. I found a support group online not long after I knew what was wrong. At first the support group helped me. Over time I realized it was actually causing me more grief and anxiety. I had to stop going to the discussion boards and just back away completely. My life was only about IBS and what I may go through or what I have already gone through. I can't live like that. Every day talking about something that is wrong instead of something good. This is the main reason I have not looked for any type of support groups for the Lupus. I can not come here every day. I can not read some of the stories. So much goes on in my life each and every day I don't want my life to be just about Lupus.

I don't know how I'm supposed to help others and be supportive when what they are going through scares me so bad that I can't get it out of my head.


Lupus affects us all so differently... some are mild, some moderate and some severe..... I had a difficult time learning what is a flare? When will I know? I've learned that I have a new normal for my life that I have a certain level of pain. I had a flare - pneumonia, right after my mother died that sent me to an urgent care and he sent me directly home for bed rest with meds and expected to put me in the hospital in a few days, but I responded well although he put me off work for a week. My mother went un-diagnosed with lupus, she was diabetic and had heart disease. We didn't realize all this until after I was diagnosed this year. I understand your fear and will talk with you any time : ) Trisha

Thank you. I guess I just have to take things as they come

I have often wondered the same thing! I was on a lupus board that it seemed like everyone was going to the ER continuously. I am not a doctor or ER kind of person. I have only been once to the ER and that was when my urine looked like cranberry juice. I feel bad most days, but I have discovered that my flares come with severe back aches, more loss of hair than usual and fatigue so bad that I don't want to shower. I'm hoping I'll just instinctively know when I need to go to the ER.


I believe that when a Lupus diagnosis is made that a 'natural panic' occurs. I know that I panicked. At the time that I was diagnosed the internet was not readily available and so I had to go to the library and check out an old book that listed "death" as the only prognosis, it insinuated that this would occur soon - and there I was with two little children! I freaked out! Well, we all know now with all the information out there that there are different levels of illness with Lupus. Sure, we will die, but we will likely live to a ripe old age. Many, many patients can go on about their lives as usual, working, living, adapting and being normal and maybe have short term flares (periods of illness) here and there while others (like myself) may have longer periods of severe disease activity causing us disability - and sometimes YES, causing us to have to visit the ER or even be admitted to the hospital for different symptoms and side illnesses caused by Lupus or other diseases we have that are associated with Lupus or organ involvement with Lupus. It is not that we are "ER People", it is just that there is a period at which we understand it is time to "go". Please be confident that you too will know when that time is - there is little "wondering" or "debating" inside yourself about whether or not it is time to call the doctor or go to the ER.

It is scary reading some of the other stories. It is probably best not to read those as a grocery list of what WILL happen to you or even what COULD happen to you. We just don't know that. My case is entirely different from anyone else's on this website - and everyone else's is different from everyone else's. For some of us, we deal with that shock and fear by offering supportive words and encouragement to those who suffer more than we do and even by offering supportive words and encouragement to those who suffer "less" than we do. We help explain some of the things that seem 'unexplainable' so that the newly diagnosed can understand what a symptom is, what it means or if it means anything at all.

Mostly though - it should be understood that it really is not all that common for all Lupus patients to have a super severe case with major organ involvement. It is like anything else, try to take it day by day and accept what is going on today, be grateful for it and try not to predict what might or might not happen today or next month or ten years from now. Telling you to bury your fear is difficult, but a good way to bury it is to help others, pray for them. Adding worry to yourself is not helping you at all. No one can predict this disease, but the odds are probably more for you than against you. The panic is natural, but it can be helped.


I really like and appreciate your post, Draginfli/Ang. It is a very encouraging way of viewing this disease. You are so on when you touch on points such as every one experiences their disease differently and trying not to predict what might or might not happen today or the future. I agree especially with the comment about helping others by praying for them. Amen to that! Living in the present, educating yourself in general as a lupus patient and praying is about all you can do. Thanks, and Happy New Year!

hi prtyblueyz, Ive had lupus for most of my life, I have spent most of that time, in total denial of it,I grew up with all brothers in the country,a tom boy,I learned to keep my feelings to myself,crying was for babies,being sick in my family was a weakness, one in my family wanted to address my health i learned to fake it really well..I take things as they come..when im sick or in a flare i still try to hide it..I have a very high pain tolerance,I wasnt untill i had heart surgery,that my family finally had this revulation,"wow" she really is sick!!!! not do what i did..all my energy was spent trying to fake it and prove to people i was fine,,so it left no time to take care of myself and rest.I told my kids for yrs..I will be 50 in april..I wish i would of taken better care of my body..I dont chat much on this site, simply because my hands do not work well and most days the computer is not my friend,Im the only person in my group of friends with no face book..I wear braces on my hands now..FOR me it is humbling..take care of your self prtybluezy and dont be afraid to talk to people about it,"LUPUS NEEDS VOICES"!!!!...fake it untill you make longer works for me...just reading some of the chats,from people have helped me change things in my life ...take care friend..celeste

Well said Ang! Glad to have you back my friend

I tried all U have done, discussion boards, groups,and I got to ur point of being scared with everyones problems. so I now rely on my doc advice and live one day @a time. be as healthy as I can be&it’ll all be ok. great advice, cuz Im never on these orgs unless im bored:( But my advice, write questions down ask yr doc, & yr illness will go one day @ at tim. U’ll learn what makes U feel good&bad. learn to live ur life from how U feel;)
Good Luk:)

Trish not sure I'm back. This one just really hit me. Hope you are well and Happy New Year my friend!

Celeste, I went through very similar things as a child. I have been looking for exactly what you said - LUPUS NEEDS VOICES! No one can understand what we are going through unless they are in our shoes. Most people cannot find a way to really understand or empathize with us. My personal advice is to STAY CONNECTED! This is a great place to find friends who care, will listen and understand. You can learn so much here too. I had been wondering also about Prtyblueyz's question too. I was diagnosed with lupus over a year ago but know I've had it much longer. I have never landed in the hospital and my organs have never been affected. I have also never been sick enough to miss work because of it. I have had MANY bad days and have plugged through them. I started to wonder how I can really have lupus if others are being affected so much more. I guess the answer goes back to everyone is different and things can change. I may end up much more sick, but I am thankful for now that I can manage. I try to focus on one day at a time and managing the disease instead of letting it manage me. Thanks all, and Happy New Year!

You people are amazing. Thank you so much. With just what was written here by all of you has made such a huge difference. I am not kidding when I see now that there is hope and I don't need to be so afraid.

I am having a very, very bad day today. I have spent hours crying. A lot of it is just frustration with all that has been going on. I'm tired of trying to be strong all the time. I'm sick of thinking that if I remind myself it could be worse then that will make everything okay.

I know tomorrow won't be as bad. I would have much more to say. I will try to have more to say when I'm not feeling so bad.

Thank you once again

Happy New Year!!!!!!!!!!!!!!!!!!


This is what I hoped you would see - I'm so glad that you are feeling some relief and when you have info overload be sure to come on here and say something like you have done.

Jennifer- it may never get worse, the better possibility is always out there.

FaceBook::: Lighthouse with Lupus, great support, informative group:)

I would say most importantly use the support boards for what you need. If you feel like hearing someone’s success story, look for those posts, if you feel like reading about someone who’s been through pain as bad as yours or worse, read those and share kind words… Share your story and see what comes back to you. Definitely avoid seeking out the scariest things you can find on those days that anxiety is taking over… But for me, this group always helps me feel normal, understood or evenidentify what problems of mine fit under the lupus experience.

For me, instead of being scared of lupus (though I do get that feeling sometimes), I was relieved to know there was an explanation for the health problems I had always had that were getting kicked down the line and passed from doc to doc like a soccer ball. Instead of worrying what a “flare” might be, I inatantly identified flares I had throughout my life back to around age 3!

Basically, a flare is a worsening of symptoms all at once (or over a short time, like days to weeks) that may go completely away afterward on its own after proper rest (like all the flares I had until about my 20s) or may increase persisting symptoms afterwards until treated with medications (like I’m trying to do now), or may persist despite treatment and cause lasting discomfort, dysfunction or disability (like I’m hoping will not happen but am trying to prepare for, practically and mentally/spiritually!) The longer periods of more symptoms versus less (or even no) symptoms, which is active disease/“lupus activity” versus remission. A short flare can cause sustained or increased lupus activity after the worst of the flare calms down, or just go back to the prior levels. Lupus does not necessarily progress over time, but it can with each flare, or it can quiet down again after months or years of high activity.

The good news is that being diagnosed with lupus doesn’t mean things will get worse (though they probably would have if you didn’t know about it and didn’t treat it with lifestyle changes and medical treatment), and it’s treatable (unlike IBS, which I also have, that just lets you know you have an abnormal and difficult condition of your body without any treatment or reversal options!) Thus, due to changes you can make, will likely get better than it has been recently and it may never get as bad again! The bad news is that there is so much mystery and uncertainty in both the day-to-day and the long term, and the “prognosis” merely reveals itself as you go along (but that’s reflective of the reality of life itself, is it not? We just learn to take things as they come, plus proactively modify our responses and actions, more fully than most people ever could. Is a life that aware/intentional really such a bad thing? I see it as a gift, albeit a frustrating and difficult one to carry!)

The best self-care you can achieve will make a huge difference no matter what severity or pattern of lupus you have, so it’s of highest importance to know yourself and what you need. That includes when to seek more information, examples, warnings or shared-experience stories, plus when to tune it out! Perhaps the most useful thing on the message board is to describe how you’re feeling today, or read about what someone had felt other days, and know that although that may never happen to you, you’ll be aware and ready to handle it when it does and know how to find comfort, support and resources from the community! With so many around us, even our own doctors and families, who don’t really understand, it’s definitely a gift to have this community of wisdom, care and true sympathy available whenever and however we need it :slight_smile:

A note on helping others: you can just share your own story or questions; that can help a ton! No need to worry if you have answers and feel free to just read. Just like with lupus, there’s a right time for everything, and it’s important to fight for what’s right for you. Being you is enough for us!


I was just recently diagnosed, but as others have mentioned I have known I was ill for years. I have ended up in the ICU for pnuemonia and uncontrolled BP. While lupus itself rarely lands you in the hospital it is the other issues that go with the disease, i.e. organ involvement & pneumonia. However, you can do much to keep yourself in good enough condition to never need to see the inside of a hospital. This is an autoimmune disease so staying away from people with obvious colds or flu, using sanitizing wipes on the handles of shopping carts and resting when YOU need to. You know your body better than anyone.

I check in on another website titled I think that just about sums this disease up for most of us. You can see a broken leg, you can see a burn, etc.

There will be days when it seems overwhelming...just a fact. That is when this site is by far it's most magical as your concerns, questions or need to vent will ALWAYS get a response. You are not alone out there.

Hang in there, kiddo. No promises that it will be rainbows and sunshine but there is much to be thankful for. Keep looking for the positive and you will find it.



Hello prtyblueyz,

Like "Trisha" said Lupus comes at we all in mild degrees, middle sate and stronger and some hit remission which is lovely to hear....if you don't mind me saying your in a panic state through your diagnosis and it's very rare people go into hospital with flares unless some other involvement as occured with them....we've had members like yourself join the site frightened to bits and once they've got to know how to handle it and live with it daily, i can honestly say i'm very "

PROUD OF THEM"....this link below explains and flares but getting worried does'nt help none of we what ever degree we have it at as it can make you feel symptoms more so try your hardest to carm down and deal with it daily, live your life steady and pace your body besides taking breaks then your adding no extra pressure to yourself.

The more you interact with members and truly get to know about it the more you can handle life in general.

I also have IBS and a good many members...they put me on colofac tablets to help stop the spasms when they occured and also lactulose to help my bowels function right, any foods that irritate it have been cut out, i'm eatting better so this is how you should be thinking.

Don't think the discussions on here will cause you harm, the discussions are added from members either got that symptoms...maybe wanting to know about the issue.

I will admit i am one of those members who have it severe where treatment won't help me but i do as i've mentioned to you, pace my life and i thank god i wake daily to a loving husband who i adore very much besides my dog and life carries on...the saying is (Life is what you make it)

So make the best of it and whoever is talking to you otherwise besides LWL ignore it because alot of people out there can't handle it themselves.

Love & hugs Terri xxx

Can not find the group

EdieLynn said:

FaceBook::: Lighthouse with Lupus, great support, informative group:)

Hello prtyblueyz,

I can't help you on that issue as i'm not with Facebook sorry :) xxx

I got reprimanded by the admin in the Lighthouse Lupus group! Seems quite a few people have been. You can vent and ask for honest responses to your questions/problems, but if you answer in any way deemed out! I have Lupus! It's too difficult to make sure I do not offend someone in some way! : )