Well, what to say to everyone with our chronic disease. ...What a shame we have lost people on this site because they wanted to follow others that basically wanted just to bring humour to that. I for one is sad beyond belief; this site 4 years ago brought me hope as This to me was a new disease; like all in the beginning who developed it or both. We were a helpful and caring community on here. I value that. I don't quite understand what has happened but I have huge respect for the administration of this group and just wish most people did Saying that my respect and hope goes to all of this site. We are United in our lives through our illness. Like it or not. Posted are welcome privately Kate if you find this message inappropriate. With kind regards to you all. Janette xx😊
Just a bit sad: Well, what to say to everyone with... - PMRGCAuk
Just a bit sad
Are you sleepless too Janette? It has been an unsettling time hasn’t it. Solutions are being sought, try not to worry in the small hours. Take care, Jane x
I’m awake too! Kidney Pain! 😱
Poor you,kidney pain is miserable. Does drinking water help at all ? I always need to re-orientate myself after nightmares. I wake up gasping with a mouth like sandpaper. I hope the pain eases off for you and you manage to drift off again. I’ve taken to cuddling a stuffed sheep Theo left behind. It’s oddly comforting.xx
DH has made me a cuppa tea & a little hot water bottle, nice. My third Urine Test Results will be back later today as they didn’t want to give me random Antibiotics as l’ve already had two lots of type specific & they haven’t worked. I have a CT Scan scheduled for 22ndMarch to check if l have a kidney stone(s)
Sleep Soon 😴 💤
That sounds comforting. It could even be gravel caused by calcium. Worse pain than labour, I’ve read. Your OH sounds so lovely. Mine just snores on. 😴☹️. X
Oh no Angela I’m sorry 😭😭😭
That's bad. I went through the same two years ago - it wasn't a stone. It was a week after finishing antis for another UTI - they gave me a stronger lot and it worked for 9 months then started again. I started with another UTI last night, loss of blood too. Am seeing Urology on Monday - be interesting what they have to say now I've been to all the Ologies with negative results from all of them. Just wish they could use joined up writing to one another.
That pain is so debilitating and you are doing the right thing keeping warm and resting, you are lucky with your caring DH. Let us know how you get on.
Love xxx
Will do Terri, good luck at your appointment, let us know how you get on x
Sorry to hear this Mrs N... If it's not one thing, it's another huh? I do hope they get you sorted soon!!!! ❤️
I have mostly bad nights now too. I actually started having bad nights months before I got diagnosed. If it wasn't because of not being able to find a comfortable painless part of my body to rest on my mattress, then it was because of the persistent dry cough. If it wasn't because of these first two reasons, it was because of insomnia. Frustrating!
We are all in that sleepless boat.
I have one of those neck pillows and a body pillow now with the microbes fillings which help you keep your head and body in a more comfy position in bed with less pressure so it helps reduce the pain induced insomnia.
Having more pillows with the neck pillow on top to lay my head between so that the top of your body is more raised helps with the coughing because it stops any fluid settling in your chest from mucus or stomach acid and keeps your airways open.
And taking naps when you need to or just going to bed earlier when you feel you could sleep , even if you think you should stay up or have stuff to do , helps alot. Catching up on lost sleep helps reduce the pain too.
Take care , Bee xx
Thank you, that's excellent advice 🙂
Hope it isn't a microbes filling - microbeads maybe 
Yes I meant microbeads , blooming Autocorrect!! Thanks , Bee xx
Yup agreed
Janette darling I feel pain over this too. So much. I’m sending you so much love sweetheart. Be strong. All will be well in the end however it goes. Xxxxxx
Never mind me... you come first with me😊
Hi
These things happen from time to time and I am sure things will settle down and get back to normal .Its important that we all support Admin and others that make this site what it is .
It happens on other sites as well so were not alone /
Well said Morrison ,the support on this site and the sometimes humourous posts really helped me to cope with this illness.l am sorry that you have so much kidney pain,l hope that you get help with this soon xxx.PS,l really miss Daisychain .
I agree with Morrison, very helpful forum, so comforting to have you nearby,when we are in need of help, keep up the good work.😍
Morrison l apologise ,l realise that it is Mrs Nails who has a kidney problem,blame it on brain fog.l do hope that Mrs Nails will be better soon xx.
Thanks Grants x
How is the kidney pain now? Have they put you on another antibiotic? Hope that gets sorted soon. Good that you’ve got a date for your scan. Let us know how you get on and hope you’ll feel better soon xx😘
Hi Jackie
Pain comes & goes but there’s always an ache, urine sample still not back & they want me to have specific antibiotics, which the previous two courses were.
So waiting until Monday now, fingers crossed it’s back as that’s last chance to get antibiotics before we go to France for a week!
How are you feeling? xxx
Hi you so need those right antibiotics don’t you. Will thinking and praying for you that this will be sorted soon. I suppose they have to wait for a specific culture to grow. Have a lovely time in France with your son and DIL.
I’m ok thank you. Still on pain killer on previous dose but I’m just getting a bit of respite from pain which is good. Go to see Consultant in a couple of weeks with a view to having other eye done, I hope the beginning of April but we’ll see.. Love Jackie 😘
Take Care & glad the Pain Meds are helping 🙏🏼
Be good to get your other eye sorted.
Will be in touch from France via PM for a catch up.
Love Angela x
Sweetheart are you feeling any better today? Xxx
If this is for me? MrsN💅🏼 l had a bad day but much improved this evening, hopefully have test results back tomorrow so they can prescribe some more antibiotics
Hope you are doing better Daisy? xx
I have only been diagnosed a couple of months, but knew I wanted to be in a support group. I tried one before this and the only thing I can say is, I'm staying right here!
We are glad you are here and that the site can continue to make.you feel.better with obviously the medical help but also the silly things that happen in our pmr journey.xx
So glad , you name is very nice , and I like to read it when I see it pop up , sounds like a cocktail . Hope to keep hearing from you , hugs , Bee x
That was a very sweet comment, Bee! Have a great day and hugs back!
Welcome pollymarierose,so pleased you are staying with us ,you will find help and support from caring and friendly people x
Thank you. It'll be nice getting to know you all.🙂
Not what you're looking for?
You may also like...
Sad
Thought you would like this.
Maybe a bit of clarification: what a rheumatologist said (today!)
If we don't laugh, we'll cry....
Is it possible to see a Silver Lining and Stay Positive during this Coronavirus Crisis , a thought from Auntie Bee.
Related Posts
- Just a question
- Aunty Bees Advent Calendar. Dec 16. Travelling with Chronic Pain. Like a Puppy , Pacing is for Life , not just for Christmas! And a quiz!
- The Bit I Don't Understand
- Hi all
- My Husband has just been diagnosed with a Frozen Shoulder , is it wrong that I am a little bit happy? How experience affects sympathy.
Moderation team
