Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Question about kidney pain

Hi, I'm new to this group. I'm 18, and I was diagnosed with PKD a couple years ago. I have good kidney function, but high BP, controlled with Lisinopril. I also have no family history of the disease.

So here's my question...how can I tell if my back pain is my kidneys or if it's just back pain? I have been having really sudden, short, sharp, pinching pains in my back around my left ribs when I move in certain ways (like bending or twisting or sometimes just changing positions and sometimes when I inhale very deeply). The pain is really, really intense, but not completely debilitating because it is not constant, it just lasts a second or two at a time (it happens many time a day though, making it annoying enough to bother me quite a bit). If it was constant I would be on the floor crying all day. It also tends to be worse after lots of physical activity, which makes me wonder if it could just be normal back pain. I have had normal back pain before though, but it has never been like this.

Is there even any way to tell if it's my kidneys or just some sort of muscle or spine thing?

Thanks for reading :)



I see your confusion. It can be really hard to tell the difference. The way you describe your pain, sounds like what I have when my cysts rupture. That's common with PKD. How about kidney stones? There are "silent stones" where they are small enough to not cause much if any pain in the urinary tract, however they can cause the same type of pain you just described in the kidney area before traveling through your urinary tract.

Maybe call your Dr Monday if it continues and ask him/her.

BTW, I also take BP meds, and have no family history of the disease. We are rare aren't we?? =)

It does sound similar to kidney pain that I've had but that really doesn't mean a thing. Everyone is an individual when it comes to this stuff so its hard to say. I've had back issues and I never had pain like you described. Usually with my back pain it was shooting pains in my hips and down my legs or just above my bum in the middle. But I had lower back issues and not higher.

i have had back pain and lots of kidney pain. Back pain, at least the kind i had, was constant, consuming, and in the middle of my back. It was so painfull i would lay in bed and hold it as long as i could before going to the bathroom so i wouldn't have to change anything.
The kidney pain that i have had is sometimes constant but when it is it is very low grade abd more wears on you than knocks you out. Sometimes i get the sharp stabbing pain and it is intense but very short, so much so that a momentary "ouch" is about all that is done and then the pain is gone. Every time i have had either of the kidney pains it has been at the side but never in the middle of my back.

Thanks so much for all of your replies!
I forgot to mention that it has been going on for several months now, so I don't think that it would be a cyst rupture because I would imagine that the pain wouldn't last that long? Just in the past week or two it has gotten worse though.
Thanks again for the responses, I think I might wait a little while and see if it gets any better or if it keeps getting worse before I see my doctor. I have been to my doctor in the past for lower back pain that I know wasn't related to my kidneys and nothing has really helped much, so I would hate to go in and complain about back pain again if there's nothing more that she can do.

For years I had twinges and aches in the upper and middle back, right around where the kidneys are naturally located (tucked under the ribs in the back and down to the waistline). They would last for a few seconds or minutes and would go away quickly, usually when I stopped doing whatever it was I was doing that started the pain in the first place (twisting, running, etc.). And sometimes I would just get some pain out of the blue. The pain was never severe enough to see a doctor or take any pain medication and rest assured, the pain of a kidney stone was very distinct and differed dramatically from the kidney twinges I used to feel. About all I would do with the twinges is put my hand over my kidney and gently let the heat of my hand seep into the surrounding area. I'd move a little and the pain would be gone and/or I would be onto doing something new and the pain would fade into the background. It was incredibly frustrating at times but not something that required medical treatment. I did find that I couldn't go running because it just downright hurt my kidneys (as did horseback riding and other jarring activities), so I had to adjust my physical fitness routine accordingly (using a stair climber and later elliptical machine, walking rather than running on a treadmill, weights, etc.).

I always chalked up the twinges to my kidneys just reminding them they were there and I should drink more water. I got the twinges long before I knew I had PKD (diagnosed at 26) and always found that if I drank more water it helped. Not sure why other than I'm one of those people who forgets to eat and drink (do as I say, not as I do!). When I mentioned the twinges to my nephrologist years after they started happening, he said it was probably just my body adjusting to the kidneys and the kidneys periodically pressing on nerves or fascia inside the body. He reassured me it was nothing to be concerned with (this was after my kidney stone/kidney infection experience, which redefined kidney pain for me, so I was more than happy to experience those twinges again).

Chances are these little twinges are either muscular or your kidney(s) just letting you know they're there. Try drinking more water and don't follow my lead of being chronically dehydrated. The water is good for you overall and really does help the kidneys immensely. It will also help your muscles and is great for headaches as well, many of which are due to dehydration.

But when in doubt, please see your doctor. A quick X-ray called a KUB (kidney, ureter, bladder) can rule out any kidney stones and put your mind at ease.

Thanks for the tip about drinking more water, I will definitely try that. I was wondering if part of the reason it was worse with physical activity was because I was getting dehydrated. I also tend to be someone who forgets to drink as much water as I should, especially when I'm exercising, although I have been trying to make more of an effort to drink water lately.
And I bet you are right that if it is kidney pain it is most likely just my kidneys letting me they're there because it does feel like it could be a pinched nerve. I will probably just mention it to my doctor at my next check up if the pain doesn't go away.
Thanks everyone for the tips, advice and shared experiences! It really helps and it's also really interesting to read about how PKD affects people differently; I am very glad that I found this website.

Despite what many doctors think, the kidneys are incredibly innervated, meaning there are a number of nerves surrounding and going to/from the kidneys. Physical activity can aggravate the kidneys, which are held in place with tendons but float a bit within the retroperitoneal area (they're more tethered in place versus solidly anchored and "sewn" to the lining of the peritoneum or back), so repetitive jarring motions of even slightly enlarged kidneys can cause pain. You may find a simple adjustment to some of your activity rather than a wholesale change will be sufficient, especially if all you're getting are twinges. I made the changes after I not only had pain, but also blood in my urine. Plus I hate, abhore, and detest running, so not being able to run was no loss whatsoever (for others it would be devastating). Wearing a firm tank top with support similar to a sports bra may help provide some added support for your kidneys and ease the intermitttent pain. Avoiding high impact, jarring sports such as judo, karate, boxing and rugby is also recommended; they're not exactly kidney-friendly even in the healthiest of people (the term "kidney punch" comes from boxing; an effective way of disabling your opponent)!

Do let us know what your doctor says, but please, don't stop all activity just for a touch of pain. While the no pain, no gain motto has long since gone out the door and been debunked as a myth and dangerous to anyone's health, staying physically active is so important to your physical and mental well being.

And drink that water. Take advantage now of each twinge as a reminder to drink more water; you should be getting at least 2 liters of water per day if you're inactive; more if you're physically active. Your kidneys will thank you (and fear not, it takes much more than even 4 liters of water per day to get any possible water toxicity, so you're perfectly safe drinking that amount). The younger you are when you get into that habit the easier it will be to maintain it down the road. I regret not doing so 30 years ago when I was your age.

Best wishes,
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