Polycystic Kidney Disease (PKD) Support Group

Hi ,The pain with this disease seems to vary from person to person but mostly it seems the bigger the kidneys the more pain. The kidney pain is mostly just under the ribs and can be back or front ,mostly back If you put your hand around your waist and spread your fingers ,your thumb on your kidney the spot on the front would still be kidneys ,if you can follow that .lol. Also the pain moves down the urinary track at times ,and into the bladder ,infections are common. ALSO IF YOUR KIDNEYS ARE PUSHING AGAINST OTHER ORGANS AND MUSCLES THAT WILL CAUSE PAIN IN THOSE AREAS ,SOME PEOPLE GET PRESSURE IN THE BACK SO HAVE ALL SORTS OF PAIN IN THE LEGS and spine ,Oh sorry about the caps .But the reason you get different advice from doctors is because it is such an unpredictable disease. most diseases you can know for sure how they will go ,where the pain will be and how bad it will get but not this one. This one we are individuals.

The same thing happened to me i was having horrible pain when i was 19 years old and went in and doctors did a cat scan and said there was a cyst the size of a grapefruit which they drained and also said that i had a few wmaller cyst in both kidneys but it was nothing to worry about then at age 24 years old went back due to still having tons of back pain and flank pain and that when i got diagnosed with severe kidney disease It is a very painful disease for me anyway I get so much pressure that i have to sleep sitting up otherwise "gravity" from laying down causes my huge kidneys to shift and cause massive pressure on my back and goes up to my lungs like they are being smashed and cant breathe hardly ... Im on pain meds and they still do not help with it at night Hope this helps

No pain!
Are you sure he's talking about PKD?!

When I was diagnosed with PKD is when my pain began! Blood in the urine had a slight burn, flank soreness/pain was acceptable, but that damn kidney stone was a killer!

Find ways to control your blood pressure in order to control kidney pain. I'm sleeping with my back about 45 degrees to the wall. It makes my breathing easier which lowers my blood pressure.

Besides pain meds some people are using heating pads to ease the pain.

PKD is very painful. I do not have fibromyalgia so I cant really help you there. But PKD is very painful and the bigger your kidneys get the more they hurt, the more they squish and the more ruptures and infections you have because the space gets tighter. My kidneys are growing up and down, not out and back. My stomach is flat even though my kidneys are huge. But they are very painful. Hang in there :)