I have noticed on this forum and some others , most folk are really struggling at the moment with worsening flares.
I remember reading somewhere that atmospheric mould was really bad for us , so maybe we all rent out some jumbos and fly to the south of France and live in a commune over Christmas!
Seriously it is just so miserable to be feeling rubbish with Christmas arriving too. Yes it is easy to push yourself to doing too much but I think we all know how to pace things and there is so much cheery and positive about Christmas time.
My autoimmune problems began almost fifty years ago as a young child with sore joints and recurrent UTIs and kidney pain. Recently after about four years of steroids despite lots of other symptoms, especially gastric, neuro etc ,at least my UTIs were at last infrequent . I previously was on almost permanent antibiotics for years but they seemed at last under control .
As soon as autumn's first leaf fell it has all come back with avengence.
I am having constant kidney pain, lack of flow nausea and shivering. Last week I had a whole five day course of Ciprofloxacin , better for one day then back it came. So now I am resigned to another spell of these nasty antibiotics. They go for my tendons.
Everything else is jumping in too and despite a large depot medrol injection only four weeks ago I have had to increase the oral steroids also.
I just realised others were having tough times too, but to be honest if it is increased mould I really don't know what we do about it.
Our house is well ventilated and warm so maybe it's just the way the cookie crumbles for us all chronic illness veterans on here!
Keep cosy and away from leaves! X
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cuttysark
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I am suffering too, and would to know the answer to this, it's my first Christmas with sort of diagnosed lupus but have had juvenile RA and now R.A for years.
Interesting you too have the tendons problem Jenwren, I always blamed the Cipro but get it even when I am off the antibiotic, so maybe the disease process too.
My right foot is bad just now with the tendon on the foot above my wee toe pulling up and tightening.
Agree re moulds. I found out 6 years ago to stop having a fresh Christmas tree in the house after suffering badly and also ended up with a nasty rash. I now have no Christmas foliage in the house of any sort. Even fake trees kept up in the attic over the year can pick things up. I have decorated with pretty little fairy lights instead. Pre lupus I was fine. I also follow the ventilate the house very well then turn the heating on to keep warm. I hope you feel better soon cuttysark.
It is tough but it is always worth doing everything we can to keep as well as possible. I have old style fairy lights, even the ones I have put up are on in short evening bursts and well away from where I am sitting. I too love the smell of a fresh pine tree. I am going to buy a few oranges and put cloves in with ribbon around.....hopefully that will be ok and give a festive smell. The problem is visiting anyone you have to sit away from trees and spot lights in the kitchen etc ...all these things cause me to flare...as if there isn't enough to think about this time of year!
Atmospheric mould is something I know nothing about however it maybe an option! Autumn comes around and I know for certain that a G.P appointment is inevitable.
Always the same pattern the fatigue, heart, gastric, etc.
Sorry that you are flaring at the moment . Antibiotics are necessary at times but do so much damage as well. I understand your reluctance to use them.
Hope you come through this quickly and can enjoy some festivities!
We seem to be twins with our collection of symptoms, I get the heart thing too, gastric, neuro, kidney, bladder , joints etc, gosh just about everything!
Trouble is I really think that is why folk don't understand , they can't actually believe there are people out there with all those symptoms. You see their face glaze over if you try to explain.
Then at they end they say"but you look so well"!!!
I know we all get that.
Someone a while ago posted about a hospital clinic which actually had a poster up which said,
"Please don't tell any of our Lupus patients that they look well!"
Hope your keep as well as you can,and enjoy a lovely Christmas.
Gosh Cuttysark, you really are having a bad time aren't you? But, like you say, we can only stay positive and it is no use being miserable. We certainly do know how to make the best of things, because we don't have an alternative. But life is good. Family and friends mean so much and at this time of year it is the best time for showing our love and joie de vivre!
Hope things improve for you over the next few days so that you can have an enjoyable Christmas.
So sorry to read your kidney infection is back after being better controlled over the years!. That's particularly tough!. I've been so lucky not to suffer this way!. I do hope you feel better soon and take care over Christmas.
I feel a wee bit better this morning so I think the second course of Cipro is finally working, fingers crossed. Got to parcel all the presents today . Miserable rain outside as usual , it would be even more miserable trying to get through the winter without Christmas wouldn't it!
Hope you have a happy time and keep as well as is possible.
Hi cuttysark. I'm sorry you are having such a rough time and I hope that the new year will start to bring some relief for you.
I don't know if it is to do with increased mould levels but I start to go downhill from the middle of October each year with an increase in a number of symptoms. So Christmas is my worst time of year and I always wish for the quick arrival of the middle of January when I start to very slowly pick up again.
It actually helps a lot to know that many of us go down hill in autumn. Not good at all, but at least we know what is happening is part of this horrid disease.
I couldn't get out of bed yesterday with this kidney infection making me feel so weak, I have doubled the steroids this morning on advice of GP and feel I can face a bit of present wrapping now.
You just panic a bit with Christmas and whole family coming round. But like most of us I am my own worst enemy and could easily leave everything out and my three daughters in law would take over and feed us.
I am looking forward to spring already!! You are so right Christmas time is so often our lowest ebb.
I've thought of your question a lot and what's happened to me ie colitis suddenly flared when I'd done health admin and all Christmas preparation and I thought I've got time to do some pleasurable things and don't feel well enough now. It's a busy stressful time of the year for lupies with lots of extra jobs and I don't run a household like you all do !. So easy for us to be ill at this time!. Glad your a little better today, hope it lasts for you and you have a happy time.X
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Anyone an expert on wee and visible white things in it/ or had similar please! 😬
Weight Loss and Public Humiliation :-)
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