Having had two kidney stone removal ops I now find myself with an e coli infection which ended up with me in hospital for 10 days.
Have become really ill and rheumy. has told me yesterday that it has now gone into my blood stream. I ache all over and am absolutely exhausted !!!
Yesterday I couldnt even get up the stairs or support myself when I had to stand - my legs just did'nt have the strength.
Am now on my fifth lot of anti-biotics but of course them and lupus don'nt really go together well. I seem to be caught up in a never ending circle and can't see my way out.
Any help and advice from anybody about fighting any infections that need anti-biotics and how to cope with them and the lupus would be much appreciated.
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irenestephen
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You have my total understanding and sympathy, it's so hard. You will get through this. I had 18 weeks of anti-biotics last year and have finished week five this year earlier today.
I wish I could give you some great advice, but honestly for me it's immodium, pain-killers and patience that get me through. A lot of prayers, sleep, swearing and stubborness also help.
I hope you find the strength you need within yourself soon, even if you have to wait for legs to catch up...I swear my head and body fell out years ago, but they're attached so what choice is there...lol.
Even though there is no 100% answer to this it is nice to know that there are other folk who find this situation difficult (not that I wish you to be ill - if you know what I mean!).
I was hoping this year would be a better one than last but I suppose with lupus that was never going to happen.
Patience has never been my strong point but for once I will have to behave and do as my rheumy. advised. All the times in the past when the kids were wee I wished for a day to sit and do nothing and now they are here I hate it - typical woman my husband says never knowing what they want!
Good night and thanks again - who knows I might wake up and find that my body and head are together again (for a little while at least).
I got recurrent chest infections last year very difficult and very poorly often took weeks to go once six weeks my rheumy temporarily stopped my immunosurpressant to get rid of the infection. Pro biotics to keep my guts ok helpful. I'm now on Long term preventative antibiotics which seem to be helping. The infections very dabilitating even scary at times.
I saw an immunologist who made sure my body responded to vaccines and to check my immune system didn't have any deficits due to the lupus.
So might be worth asking if your on immunosurpressant if safe to stop.
Pro biotics
? Ask for immunology referal or your compilments levels immune system checked
and like lupussurvivor sleep prayers plenty of fluids
I agree with lupussurvivor. And also feel your attitude to this is good. My version of lifelong SLE seemsto mean I've been prone for 58 yrs to any infection that can get going. So I've taken loads of antibiotics (oral usually but once IV inpatient) over the decades, and they always seemed to more or less work, but made me feel pretty crap while I was on them.
But it has only in this past year that I have discovered what it's like to be on long term aggressive oral antibiotics treatment: last week I was allowed to come off after 5 months of flucloxacillin 500 mg 4x daily, with the weird fasting routine that antibiotic requires.
My condition was due to a long term infection that had been underestimated by perfectly good dentists & an oral surgeon & my gp, partly cause my SLE wasn't NHS diagnosed until last year. This led into osteomyelitis of the upper jawbone & sinusitis in that sinus space, & nasal passage infection, above the bad bit of jaw. Last week ENT told me my CT seems clear now, finally, but I still have symptoms. So now it's a case of keep in touch with all my consultants & drs while we see what happens off the flucloxacillin.
My feeling is that managing this infection & the antibiotics treatment over the past 5 months has been really really hard. But has also given me a weird sort of strength. For what it's worth, seems to me:
You're right: learning the special sort of patience this antibiotics stuff takes is a good thing. And discovering the a multidisciplinary approach this treatment requires can work if I do my best to take responsibility for myself while i also do my best to reach out, trust in and communicate with the drs and nurses who really are here wanting to help within the limitations of the system. Panic is tempting at times, but doesn't really help much so if poss: let it go. And, for me, the solidarity of one special member of this forum has made all the diff (this really special person has longtime experience of these antibiotic regimes and basically has made all the diff to me, even though the treatment she herself is undergoing is arduous)...and back 5 months ago, at the beginning of my current infection ordeal, she was really pretty much the main forum member who replied to my antibiotics/ infection forum questions: I admit it: I was really upset, and her good counsel and friendship has made all the diff, empowering and calming me. So if there is anything I can do to show this solidarity to anyone going through this antibiotics thing: I'm going to do my level best!
Whatever, I know I am not out of the woods yet, but I also know this is something I can cope with more or less ok if I just keep calm & carry on. I feel it's probably more or less the same for you and anyone else. Since my NHS diagnosis, I've read a lot of posts here about coping on all sorts of other types of serious meds, and felt total respect for everyone doing this. But antibiotics like those we're on haven't been mentioned much. So, I'm very grateful to you both for your posts and hope maybe you'll feel like keeping in touch. But no hard feelings if not
PS tatty's reply only shoed on my screen when I pushed submit: seems to me she is totally right about how to cope: those sort of Lifestyle management things have made all the diff to me!
E.g. And it took me ages to realise that my sicca probs were making swallowing the bad tasting caps really hard (they got stuck in my oesophagus & hurt), but finally I realised that mixing 1/2 & 1/2 sparkling water with still cut the bad taste, and taking several slow sips of water before taking the cap helped prep my gullet so the caps went down better, + after each cap gradually drinking a good glass of water also helped
Thankyou for taking the time to answer my plea for help. I am struggling to get over this bout of illness as it seems I have been going from one thing to the other for ever. I usually fight this lupus in every way I can but at the moment it is trying its best to win and I am ashamed to say that it is just now.
I feel sooooooooooooooo tired. Yesterday was such a bad day that when I got myself to wash some dishes I then had to lie down for the next couple of hours!
I have made myself have a sit down shower and actually put some clothes on instead of being in pyjamas today and at the moment am in a fighting mode. We will see how this goes on for the rest of the day!
What worries me is that I am allergic to so many things that they had to get a micro-biologist to work out what anti-biotics I can take so if this e coli is resisting this one where do I go from here? I feel I am going round in square circles and the fight goes on - anti-biotics versus lupus and at the moment the result is 2 - 1 odds on the anti-biotics!
I have the most understanding husband and family but I find it hard to explain just howI am feeling at any one point in time. If it was'nt for you and this forum I think I would be completely at a loss on how to cope.
I am at the moment trying very hard not to take notice of the aches and pains that this e coli infection is causing or the fact that I hve now got a mouthful of ulcers due to the anti-biotics! If I wake up tomorrow and my hair has turned green I would'nt be at all surprised the way things are going
I have an appointment with my very understanding rheumy. and will mention some of the things you said.and see what that brings.
A very understanding family is great but sometimes the feeling of being a burden washes over me and I find it hard to explain to them just how I feel at any one point in time. Like a lot of things only people who have gone through the same experience really know what it is all about.
Especially glad to know your rheumy is great: what a diff that makes. And a microbiologist on your case: good. Not that anyone would ever wish for all this
Today I have actually achieved some light housework (putting some washing in machine then putting it out - wahey go me!!!!!!!!!!!!!)
. Really tired and shattered but at least I feel that I have done something to make me feel tired - if that makes sense. Sometimes I get very tired of being tired
All I can do now is hope the doc. will give the all clear for the e coli and then hopefully I can just get on with everything else - the aches , the pains, the stiff and swollen hands, the Raynauds, the short term memory loss, the balance issues, the crappy bones and the fact that I was 54 last Thursday but feel like I have the body of a 90 year old (in fact my mum is 93 this year and she is in better shape!).
Off to take my tablets and get some sleep - I wonder how many tablets we have all taken since we were all diagnosed????????
I HAVE ALL THESE CRAZY SYMPTOMS ALL THE TIME.I FEEL DEPRESSED A LOT BUT I TRY NOT TO THINK ABOUT MY SITUATION BECAUSE I HAVE A TEENAGE DAUGHTER WHO IS nonverbal non-mobile(C.P) TOTALLY DEPENDANT ON ME SO I TRY TO JUST PUSH MY PROBLEMS OUT OF MY MIND.SO MUCH HAS HAPPENED TO ME SINCE I WAS DIAGNOSED.I ALWAYS TRY TO BLOCK EVERYTHING OUT TO KEEP FROM WORRYING WHAT MIGHT HAPPEN TO MY BABY IF SOMETHING HAPPENS TO ME.I FIND MYSELF CRY!NG OFTEN IN THE MIDDLE OF THE NIGHT WHEN I KNO SHEs ASLEEP.I HAVE NO FAMILY SUPPORT BUT I DONt WORRY ABOUT THAT B/C I PROBABLY WOULDnt WANT TO BE BOTHERED IF THEY WERE TO SHOW ANY INTEREST.SORRY IF THIS BOTHERS ANYONE.SOMETIMES I GET OVERWHELMED!!!
Yes u will get threw it I had the problem of having another illness on top called hidradenitis suppertiva and the antibiotic they gave u triggers a lupus flare but of course the drs here have no understanding of lupus whatsoever I have to tell them I've had loads of problems with drs here not realising it takes longer for a lupus person to get well
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