Polycystic Kidney Disease (PKD) Support Group

According to my doctors, yes those pains are normal.

I've been living with them for a little over a year now.

Nothing works for me aside from distraction.

I read and write a lot....if I can get my mind off of it I'm all good.

Resting when you need to helps too. I don't do much anymore these days because it all hurts too much.

Welcome to our group. Maybe some others will have some good tips to try :)

hi Emily and welcome.
pain in the side can very well come from the kidney, it could possibly have to do with gall bladder, a digestive problem, who knows? lower back pain can be caused by many things, it may have nothing to do with your PKD.
Tylenol is generally safe if taken as directed. aspirin and most other non prescription pain meds should only be taken if approved by your nephrologist because they are processed through the kidneys and can cause damage.
ice is helpful for a new injury, it reduces swelling. for chronic back pain heat is better. acupuncture or chiropractic may help with the pain but it would be good to know exactly what is causing the pain. try to get an appointment with your neph to discuss the pains you are having and how best to treat them.
btw, if your doctor tells you PKD doesn't cause pain, find another doctor. there are still doctors out there telling this to patients.

Hi Emily! The low back pain is often caused by poor posture, slumping over the computer, sleeping on your stomach and if your kidneys are grossly enlarged, the natural change in posture that comes with accomodating the enlarged organs. PKD itself is rarely if ever to blame directly. It's important to remember we are a system of systems and although PKD is a signficant disease, it's not the cause for all that ails us, no matter how much we may want to blame it.

Since the pain is more than 24 hours old, heat is probably better than ice (you want to loosen up the tight muscles). When stationary, I like a large electric heating pad that I can wrap around my lower back and tie in place. When I'm moving around, I find the Thermacare heatwraps, size L/XL (regardless of what size you would normally wear) works wonders and stay warm for 8-10 hours. You can move them around to focus the heat on any specific part of the body you want, so if the pain is worse on the left than the right you can adjust the wrap accordingly.

For sleep, try sleeping on your side with a pillow between your knees instead of the classic on your back with a pillow under your knees position that most people recommend. The side position puts less stress on your lower back and having dealt with the pain of a lower back injury for 24 years, I can tell you it makes a world of difference.

It's important to watch your posture at all times and to move around and get up and stretch on a regular basis. We tend to sit in front of the computer (or TV) for hours on end and don't move anything other than our hands. It's no wonder our bodies start to rebel and ache! I actually use an exercise ball chair as a computer chair, so it requires me to use my abdominal muscles to sit up straight and I'm a wiggler by nature (always have been), so my legs are always changing positions and I'm constantly moving from side to side to stretch even without getting up. Plus I get up about every 15-30 minutes to stretch, get more water, cuddle with a cat (or rescue the wireless modem from overheating because one cat loves to use it as a butt warmer!), etc. It helps my lower back immensely.

Oh, the PKD pain? Sides and middle back. I happen to be an abberation and have a massively cystic liver that has taken over my body, so I have pain throughout my abdomen, pelvis and upper/middle back (it's all liver and kidneys), but that's just me. It's a very unusual presentation...and I just have to be different!

Hope some of the suggestions help!
Ruth