I know stress makes a flare up worse.But isn't this sort of the way anyone would feel highly stressed I'm in agony how can i not worry!

I know stress makes a flare up worse.But isn't this sort of the way anyone would feel highly stressed  I'm in agony how can i not worry!

I literally feel like if 1 more thing happens I'm going to just not be able to go on,I cannot not be stressed I cannot.I wake up feeling like I guzzled a gallon of gasoline overnight???Why I do not know..I have several ulcers they bleed then they dont the biggest is exactly like the size of an eye it looks like a eye shape and goes deep..They gave me pictures of my busted up ulcers.My kidney hurts and my surgeon is afraid to do surgeries because "I have lupus and am more prone to infections".I just finished a round of cipiro 2 weeks ago. I still have the stone it has not passed.It only hurts when I walk or stand BTW I have a 11 month old daughter!So is GI problems the norm for lupus and how about then the kidney stones cronically and ulcers.Is this all connected?Does everyone go thru these exact things kidney stones ulcers tendons so tight they feel like they are going to snap?This is the first time I have went through this and knew it was a "lupus" thing .Its like a round of terribly painful things. I also get FAT I gain 40 pounds all without barely eating.Then everything goes away at once the weight falls off and the ulcers go away i can eat jalapenos ,anything nothing bothers my stomach.Am I so unlucky to have all these problems or are they all something lupus patients suffer from?I cannot say i have never been this aggrivated as I have been going thru this for over a decade not knowing the lupus part just thought it was a bunch of medical problems.Ugly this lupus is a ugly thing its the only way to explain how it is.

4 Replies

  • So sorry to hear how you are feeling hang in there!! Lupus I have always thought not only ugly but a cruel diseaae

  • Wow, your sure don't have it easy.  This added stress is not helping much with anything.  My Lupus first started like this but then mellowed out once on the right meds..  I can say one thing that worked for me is to avoid foods that caused me inflammation, such as sulfides (for me).  Once I started to eat foods that didn't irritate me with immediate inflammation or produce phlegm,  I started to feel better.   All you can really do at this point is stay in touch with your Dr, eat healthy, get as much sleep as you can, meditate if you can  and stay active.  This will give you the feeling of at least being able to control something and hopefully it's the start you need to feel better.  I realize this is hard with a baby but you seem very determined from all your posts I've read from you.  You could even look up muscle testing yourself on line to weed out foods that may be bothering you that you never realized.  I had  celery juice on it's own  the other day and got phlegm immediately, and I cooked everything with it.  Now I have to rethink some things myself.  I had 2 surgeries in January and my Anesthetist said maybe I should wait till I feel better and my lupus is more stable.  I told him I'm always going to have Lupus and kidney nephritis so when is there going to be a good time.  Recovery was hard I might add but they were pretty big surgeries.  I  maybe should have only done one or spaced them out more because  after a month of the surgeries I was getting weird epidermis pain, burning like and lost a lot of weight.   I started to eat junk to gain the weight back and messed up my system and now am trying to recover from that.

    Stay strong and take one day at a time and keep us informed,  (love your pictures) :)

  • Thank you I just want to feel better.You know that song"wanna feel better better better lol..I listen to that and thnk I'm not alone.

  • Dont this Lupus push you to the limit? Well, what you thought was a limit, til the mouth ulcers kick off as well, or those muscle pains kick off, again, too? 

    Push you? Oh dont start me. If its not the symptom after symptom, its a casual hurtful remark, or the lack of patience with yourself. Layer, on layer.

    You have struck me as a strong and resourcful person. All these different problems. Is it Lupus? I know the seeming last straw. Met it, stared it down and thrown it away. Sometimes our body and mind despair together, but it is only a brief moment of tiredness beyond exhaustion. You will pick up. You will. You are a mum. Enough said.

    Yes Lupus is cruel. Sometimes I think it has a wicked sense of humour too. Prostrate, in pain, door bell ringing, phone ringing and all you can do is blink. Well, and breathe. And laugh, a bit, painfully. Are you SERIOUS Lupus? Really?

    Next day you do a bit more, ache a bit less. A good day, by our standards.

    You are much stronger than you know. Look at those decisions you have made, and dismissed recovery with a throw away remark.

    Hang in there. We know. We all know. No two descriptions of our own struggles alike, except that THAT IS alike. One more variable to add. One more brick in the wall. One day we will get over that so tall wall. One day after all the struggle, the sliding back, the scuffed knees, broken finger nails and torn clothes, hands will reach down, hands will reach up and grab your bum and you/we will be pushed and pulled over that wall. One day. We simply (ha) have to get there. 

    We know. We share. We understand. We love that you can open up on this incredible site and be caught on a cloud of non judging, sympathetic support. We all need an outlet. Thank Lupu UK for this one and the gurus and friends from all over who come here to listen, rant, cry and take heart.

    This has turned into an essay. Sorry.

    I hope tomorrow is a better day for you, and the day after that. 

    You have my admiration for your steel through your many trials.

    Hang in.




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