Kidney pain?

[Londonlupie]

Hi all, this is my first post! I have a lot of the usual lupus symptoms: dry eyes, migratory joint and tendon pain, severe skin reactions to sun, muscle aches, fatigue, brain fog, ulcers, recurrent chest infections...

One thing I’ve struggled with for at least 10 years now is kidney pain. I have periodic kidney stones which is no news, but this pain is different. It’s like a throbbing ache in both kidneys and it coincides with joint pain and general flare symptoms. I had a CT on my kidneys in July and only the left showed stones, but the right side was causing the most pain. No infection either and urine okay for now.

Has anybody else experienced this inflammatory kidney pain before? I have it almost daily right now!

[Freckle1000]

Hello and welcome to you're first post !

👋

Yep. I'd describe the pain I get in my kidneys when they're flaring as a very dull ache that comes and go's a bit - but without the throbbing. The pain is next to non existent.

If there's the slightest chance you're flaring - I'd advise you to have a full lupus and renal pathology investigation, bloods etc. just to be safe. A lot of people don't feel a thing. Renal flares can be a complete surprise for many.

[Londonlupie in reply to Freckle1000]

Thanks so much for sharing, the urologist is never concerned by my kidney pain but I know it isn’t right! I’ve just had my blood work done and will be discussing the results in a few days.

Can I ask, when you experience the kidney pain does it ever show up in your bloods or urine analysis? I worry that there is minor damage being done which doesn’t show up until it’s more severe.

Thanks

[Freckle1000 in reply to Londonlupie]

Yep - the pain has mirrored when I've had a renal flare - ( the bloods and urine always show whats going on ) but for me to be able to feel that dull ache - for me at least it usually has to be quite a serious flare. If you're worried I'd advise getting a referral to a nephrologist. At times they can be better with Lupus knowledge too.

[Muff20]

Hi Londonlupie welcome 😁 I get dreadful pain in my kidneys and bladder. My bladder is the worse. Always feel like I have an infection. Everything always comes back 'normal'. Had bladder camera. Have urine tested but nothing. I have been like this for a few years. I know things like sjrogens and lupus can cause urinary problems and I have sjrogens symtoms. I am also a lady of a certain age which gets blamed for a lot of things. Unfortunately I have had problems for so many years I am at the point of giving in to the notion that Drs can't do much at all.Just get things checked, not sure what else we can do🤔

[Sugarcandy68 in reply to Muff20]

Hi Muff20, I had exactly the same symptoms as you with my bladder and was diagnosed with Interstitial Cystitis. I completely cut out all acidic foods & drinks ( coffee, tea, tomato’s etc ) and also worked on relaxing my tight pelvic floor muscles. I also used to suffer with kidney pain and i do have reduced kidney function but that pain has now got a lot better too It took a good 3 months of living off plain food and just water and vanilla milkshakes but I finally got to a point where I stopped feeling like I permanently had a UTI. If you want to try it look up the IC diet there is also an app you can download “ICN food list” which really helps with what you can and can’t eat. I have now slowly reintroduced some foods but it lets me know if I’ve pushed it too far. I know this may not work for everyone but it has really helped me and I think you have to 100% follow it in the beginning for it to help. I hope you get some relief soon.

[Muff20 in reply to Sugarcandy68]

Thanks Sugarcandy68. Unfortunately I am over 7 years into this illness and unfortunately no answers. I haven't been able to have caffeine for years, so it's not caffeine. I have so many foods I can't eat due to bowel problems (celiac), swallowing problems and major allergies so cutting anything else out makes life very difficult. I have alot of nerve involvement which is most definitely linked. Unfortunately no one can repair damaged nerves. I don't know how old you are but alot happens when you get to menopause and unfortunately nothing can change that either. I have muscle condition which so far they can't pinpoint. After 7 years of fighting I am slowly trying to accept Drs can't actually cure me.

[Hidden]

I also have kidney and bladder discomfort a lot. After having chronic UTIs I was sent to a Urologist for a work up, he found nothing apart from an extra kidney. He told me to take D-Mannose 1000 mgs per day, once a day for prophylaxis, and three times a day if you are having a lot of discomfort. It works. I haven't had a UTI for a couple years now since using D-Mannose. It is a fruit sugar like cranberry but stronger. If I feel I may be getting a bladder infection I start taking it three times a day and it ususally goes away.

[Londonlupie in reply to Hidden]

Hi PacificCLL,

Thanks so much for the advice, I'll certainly take you up on this! I've been exercising less intensely recently and my kidney pain is less frequent, so I think it's a combination of my body becoming dehydrated and the intense exercise exacerbating inflammation. I drink ridiculous amounts of water to help, but I'll certainly try the D-Mannose. Thanks!