Stage 2 ckd with constant pain

[Pdbird]

Has anyone else experienced severe pain in one side for a long period of time? I get kidney stones regularly & my kidney does have lots of very small stones but the urologist says they shouldn’t be causing my pain as they’re too small.

Nephrology says I have egfr 61 & creatine 100. Hypertensive, hypercalciuria & hypercitraturia. I’m unsure what all this means but the pain is keeping me off work & most days completely off my feet. I have lots of pain medication from my GP which wipes me out also. My life seems to be I’m either in complete agony or high as a kite on pain meds.

[Bassetmommer]

HI Pdbird,

That's no way to live. Kidney stones can cause pain. Take it from someone who passed over 32 stones ( that's what I caught, who knows how many others I did not) If I sat back to hard or bent the wrong way, I had pain. This is not even talking about the pain of trying to pass them. Your doctor needs to be more sensitive to your issue. Taking pain medication can also be very bad for the kidney, depending on what it is. Ibuprofen was prescribed to me for my arthritis and that compounded my kidney issues.

Once I was put on Allopurinol, and citrate acid solution, the stones went away. My stones were cause from high uric acid, There are things your doctor can do to help dissolve the stones and stop them from occurring.

Being hypercalciuria & hypercitraturia means you have too much calcium in you body and your parathyroid is not working well. Both of these things can be corrected or improved.

See if you can see a renal dietician who can help you get on a diet that will improved your blood, thyroid and kidney function. You are at stage 2 CKD, but without mediation, you could continue to lose kidney function like I did.

[RickHow]

You are kind of assuming that your pain is kidney related. It can so easily be something else. I have only one kidney. And on that kidney is a large cyst. One day I got some pain, but thought nothing about it. But day after day it did not go away and in fact increased. Finally I went to my gp. He sent me for scan. Kidney was normal. (although I am stage 3b CKD). The pain? Determined to be muscular. Gave me muscle relaxer medication. Within a day it lessened. Surprised your doctor just "treats" your complaint with pain medication. But sounds like they have determined it is not your kidney and like mine, just muscular. Muscles can take 6 to 8 weeks to return to normal.

[Pdbird in reply to RickHow]

It’s definitely kidney pain. Right flank pain sometimes radiating to my groin. I’ve been getting regular kidney stones for five years but for the last year the pain is daily. Urology says the small stones which are in my kidney shouldn’t be causing this pain so is kidney related as it also gets worse if I drink alcohol or if the Dr presses around the area. Nephrology saying it’s could well be kidney but hard to treat so pain clinic next. I take Lots of different pain relief daily & even that doesn’t help the pain much. I’m at my wits end now, I spend most of my time in bed, been off work for almost a year with it

[RickHow in reply to Pdbird]

Hasn't anyone done an ultrasound, or CT scan of that kidney?? To check for stones, or other types of blockage, or tumor? Has anyone given you hydrocodone (or equivalent) for pain? I assume you have had tests for UTI? Also check out this link:

healthline.com/health/right...

[Pdbird in reply to RickHow]

I’ve had scans, ct scans, blood tests & many 24 hour urine collection tests. The scans showed lots of tiny stones in that kidney which shouldn’t be causing me the pain I’ve been in.

I’m currently on:

Econac 100mg suppositories

Codeine phosphate 30mg

Pregablin 75mg

Morphine surface 10mg/5ml

The nephrology dr has suggested an ACE inhibitor.

My last bloods were done in January so will be having more done this week.

I was born with duplex kidneys & during lex urethras on both sides & had the extra bits removed 30 years ago.

I’m just at my wits end now, I need to get back to work & I need to be fit & well enough to look after my family

[ballie52 in reply to Pdbird]

Hi Pd bird I also have duplex kidneys on my left side and a calaceal diverticular pouch which gathers lots of small stones!

I had PCNL done to try and get rid of the stones but they seem to have grown back again...!yes they can hurt as my left kidney has been in agony for the last 4 mths because of the growth of the stones to 13mm..you know yourself when it's the kidney that hurts..doctors are quick to say kidney stones shouldn't hurt when they are still in the kidney but they can hurt like hell

Hope you manage to get things sorted out soon.

[Pdbird in reply to ballie52]

Hey Ballie52

I have had a letter from the hospital (nephrology) saying that my results show my eGFR has improved from 61 to 71 which is great news. My blood pressure is slightly high & advises my GP to maybe start meds to bring it down but after speaking to my GP (he has one kidney) decided that I will monitor my own BP at home sending him the numbers weekly. I’ve now been referred to a pain clinic to try & hopefully find something to help so I can have some sort of quality of life.

I hope you’re feeling better soon! We do definitely know when there’s a stone, I agree! The pain at times is unbearable & twice now I’ve been told by the same urologist that the stones I have are too small to cause me such pain. My GP however thinks the pain I have is down to the fact I had two kidneys & urethras removed as a child meaning there’s lots of scar tissue (no keyhole surgery in the 80s) plus having regular stones makes my body tense if A stone is being passed even if it’s tiny or I become dehydrated, which I’m ensuring this doesn’t happen.

Fingers crossed though, surely things can only get better now I have a fantastic GP who actually listens.

Sending hugs xx

[ballie52 in reply to Pdbird]

You are definitely right as I get kidney pain and was told exactly the same that stones shouldn't hurt but we both know it can cause kidney pain..since the growth of mine to 13mm I get kidney pain a lot!

[seabreezegirl]

I used to get kidney stones also . When I stopped the calcium supplements I was taking . I stopped getting kidney stones. Calcium is good but I was taking TOO much . Also look up diet and kidney stones as there are some foods you should cut way back on.

Now I only get the pain when I eat something I should not . I take note if it and do not eat or drink it again . Now I rarely have pain. Drink lots of pure filtered water . Mine is doubled filtered as i have a whole house filter system and then I run it through a Pur filter again . The water tastes great which makes me want to drink it .

I used to drink lots of bottled water until I read that there are an average of 376 micro particals of plastic in each bottle of any brand of bottled water . I stopped drinking the stuff as I do not think plastic particals in anyone's kidneys are good but especially for us with CKD . Also have you tried CBD oil for pain it will help take the edge of the pain and is not addictive.

Just a couple of ideas for you to try . Chronic high level pain is horrible I really hope you get some relief .