Log in
NRAS
25,669 members29,268 posts

My body seems to be shutting down.

Hello there.

I am currently in a bad way and wondered if anyone else had experienced the same or similar problems.

Since November I have been suffering from continuous UTI's which have escalated to my kidneys. I have been to my doctors 3 times regarding pain in my kidney's but feel that I am not being heard. Twice I have been sent away with antibiotics which have given me terrible nausea and my kidneys have not been examined despite the pain not improving.

I have had terrible pain and swelling in my knee and elbows due to damage in the joints for which I was prescribed naproxen. I ended up getting rushed into a&e on Tuesday as the naproxen has stripped my stomach and I was delirious with pain. (no exaggeration, I could barely talk it was so intense) I spent the day on morphine and meds to help soothe my stomach. I was sent away with some omeprazole and more antibiotics as my infection has not subsided.

I am now in agony with my left kidney and have been up all night with the pain. I have taken co-dydramol but it only lasts 2 hours and I have to suffer for another 2 before I can take more. I was also told at the hospital that my liver is inflamed which the receptionist at my GP mentioned during my last visit but the doctor completely ignored during my appointment. I have to go back to my GP today to get them to send me for a scan of my kidneys having been on the phone to SELDOC through the night.

I feel like I am imploding. I can't deal with the pain anymore. I am supposed to go back to work on Monday haven been signed off because my knee was so bad but I don't know how I am going to cope. Has anyone experienced anything similar??

Any advice would be great.

Thanks

23 Replies
oldestnewest

You poor thing! I'm sorry, I have not had this issue so my advice may not be helpful. All I can suggest is that you go to A&E again. You obviously aren't getting adequate treatment for your uti/kidney infections. It sounds as though you have pyelonephritis which, if it isn't treated properly, will cause severe damage to your kidneys. I really hope that you can get your GP to take notice of you. Tell him what you are worried about, maybe that will make him take you seriously. And if you have someone who can attend with you, that might be helpful, especially if they say how worried they are too. Good luck, Clemmie

2 likes
Reply

Sorry have had no experience with uti but my thoughts are with you......I agree with barrister go and get help !!! You need it! I hope you feel better really soon ....and don't worry about work - you need to focus on being well first x

1 like
Reply

So I have just returned from my GP to learn that I now have a full blown kidney infection (pyelonephritis)and that the antibiotics I was discharged form a&e with were the one and only kind that my infection is resistant to! How did this go unchecked? This is now why I'm in agony because the antibiotics were useless. I'm so angry!! I now have morphine patches as my body is in too bad a state to risk any more tablets. So boring.

2 likes
Reply

Have you been referred to a Urologist. I did receive good treatment, however it was very difficult to treat. I wasn't able to have my Humira so the RA flared as well. Wishing you all the very best. Hugs X

1 like
Reply

((hugs)) M x

Reply

Oh dear what a mess. I have suffered over the years with UTI's luckily never going to my kidneys though. Still feel for you as the pain is unbelievable, I had a UTI in 2015 that lasted for 5 months and was resistant to antibiotics, I ended up having my ureathra stretched under general. I lost weight, had no energy, had to cancel a holiday to the states. Was a miserable time. Wishing you better soon. Hugs X

2 likes
Reply

Hi there, im sorry you are going through this, what you didnt say is what medication you are on for your RA, surely if you need antibiotics due to infection and/or have an inflamed liver if you are on anything except pain relief that should be stopped as well?. Maybe you are not on MTX or anything similar.

2 likes
Reply

I am on MTX, tocilizumab and prednisone alongside my painkillers but no one has told me to stop anything. I wondered about it too but I think I was too out of it to question the doctors at the time.

1 like
Reply

Well i can fully understand you being out of it with a heavy UTI, i can say two things, firstly when i showed high level readings on liver enzymes and damage was mentioned thet took me off MTX and when i had a bad ear infection which caused my eardrum to burst and when i had an oral abcess i was given anti biotics both times but i was also told to hold my RA meds which at the time were MTX and Hydroxychloroquin because both my gp and dentist who prescribed the anti biotics told me that anti biotivs would not work whilst on RA meds which reduce immunity. That makes perfect sense to me because one med would be fighting the other, now there may be a reason why that applies to me and not to you, i dont know and i am not a doctor, but i think you should definately ask a doctor to check what you should be doing.

Blessings

Reply

Yes I've had an infection before and told to stop methotrexate. This last two weeks grandbaby had chicken pox so I've been put on Antivirals and again told no methotrexate again! M x

1 like
Reply

No wonder you are at your wit's end. It's difficult to see how you can be just sent home without someone taking a holistic look. Did you ever get the chance to explain your situation to a single health professional who actually listened to you? If not, I hope you'll get that very soon. Be gentle, but persistent in your demands. Our health professionals do care. Have you spoken to the NRAS helpline about your situation? If not, I would strongly recommend you do so. It's really worth making that call. All the very best.

2 likes
Reply

Huge hugs coming at you. Been there, done that, got the kidney damage. I agree with all the advice you've been given but could I just add this. Drink as much as you possibly can raw water, barley water, any non-acid liquid you can force down. It helps Jan

2 likes
Reply

Hi Suki1088 - It sounds like you are having a really hard time there and I am so sorry for that. The UTIs can be really dangerous, so I have my fingers crossed that you get it straight soon, and stop feeling bad in the process..

Reply

Thank you all for your advice. I great appreciate it. I had to go into hospital again last night as my morphine patches were not enough to stop my kidney pain. It has been a long night following a really tough couple of days of not being able to sleep or eat because of pain and nausea I really hope this settles soon. I'm not sure I can cope much longer.

1 like
Reply

I'm so sorry you're so poorly, appropriate choice of adjective really considering, you really have been poorly treated too. It begs the question why you weren't also prescribed a ppi such as the omeprazole they prescribed at hospital when you were initially prescribed naproxen, that could have avoided you stomach problems & the pain, it's common practice for goodness sake.

It really does seem your GP isn't listening either, being informed by his patient of kidney problems on three different occasions & not taking even a basic blood test he's failed in basic medical practice. Also why if the Receptionist was aware of an abnormal liver result why did your GP not ask you to either stop any treatment which could affect the liver until your blood could be tested again or simply call you in for order another blood test. Did you ask at the appointment or was it as you left the Receptionist informed you? Either way he's responsible for reading your blood test results & if it was significantly higher than your norm then he should have acted on it. I do hope you've now seen your GP & informed him of your hospital visits. I think unless there's good reasons given for his failures I'd either be asking another in the Practice to to be your named GP or asking around locally for recommendations for another Practice to take you on.

It makes me so cross to hear of such practice, especially from primary care, you might have guessed, it's a real concern.

I do seriously hope you're able to recover fully from these troubles & you soon start to show positive results. Take good care Suki. x

2 likes
Reply

Thank you for your support. I am looking into changing practice as I'm not at all happy with the care I've received.

2 likes
Reply

2 things about that, firstly you may leave a gap in your care of 10 days while your physical files disappear so make sure you are not needing a script or blood tests etc during that time. Secondly if you do leave you must consider still putting in a complaint. It is far better that a doctor is corrected over a mistake and improves his /her performance by a complaint procedure than by the result of an inquest. We should always try and consider the impact of our health care on others especially those coming behind, things like adverse reactions to a nedicine should always be reported and recorded for the safety of us all.

Blessings

Reply

Yes you make a good point.. thanks for the advise.

1 like
Reply

From experience, though this may not be the case In every CCG, if it's a local transfer it should be pretty immediate, in transferring electronic records that is. There's a system called GP2GP designed to make things easier but it depends on if they react & transfer them to the new Practice straight away of course. Paper records can take longer because they've to go from the Practice you're leaving to NHS England (or whichever country you're in) & then from there on to your new Practice. With electronic records you should be able to make an appointment teeou've been accepted, which could be the following day after you've left the care of the previous GP, excepting Sunday's or if the Surgery is closed all weekend. That's in practice of course!

1 like
Reply

Thats good info for eveyone i didnt know any of that. Thank you.

1 like
Reply

You're welcome. Happy to share.

1 like
Reply

That should be you should be able to make an appointment the day after you've been accepted

Reply

I think you should contact your rheumatology helpline because if you have an infection and are on antibiotics then you have to stop your tocilizumab, although I've never had to stop my mtx. The biologics supress your immune system so it can't fight the infection as well. I hope your new antibiotics start to work very soon. X

Reply

You may also like...