Hello,
I have PKD and have dealt with flank pain, that at times can be debilitating, for many years. I am so sorry your son is dealing with this.
I am a dance and yoga teacher, and found a few things to be helpful. Nothing stopped the pain, which was usually just big kidney cysts pressing against organs and muscles. Like the pain a piece of dirt causes when it is in your eye. Sometimes, it was a cyst rupturing. I never had a cyst drained, though I have heard this is possible. I had my left kidney removed during a kidney transplant a year ago, a few months prior to needing dialysis. So now, I only have flank pain on the right side. I am scheduling my second nephrology for the end of this year. I recommend doing the double nephrectomy, at time of transplant, if at all possible.
I was only allowed to take Tylenol, which had the pain-killing effect of a breath mint. I did not take opioids because I believe they are toxic and highly addictive. So here are some things that helped me:
1. For me, sitting was the worst, so I worked standing up whenever possible.
2. I would lay down several times a day for 10 minutes, which relieved the pain significantly.
3. I took hot epsom salt baths, which, for whatever reason, helped.
4. I did a yoga exercise called the "Cat Cow" which you could youtube for a demonstration. Basically, you get on all fours, round the back - lifting the navel toward the ceiling-like a cat when it hisses. And then drop the navel to the ground, lifting the tailbone and head toward the ceiling- like a cow. Inhale slowly (8counts) on the Cow and exhale slowly on the Cat (8counts).
5.Slow deep belly breathing, an old pain management technique that morphed into pregnancy labor breathing, can help too. Slowing the breath and breathing deeply through the nose, filling the lower part of the lungs, mid and then upper, for 8 cts; and then exhaling completely and slowly for 8 cts, is effective for two reasons. One, it gets the mind to concentrate on counting 8 counts rather than "Ouch!" It also fakes the body into a more relaxed mode, rather than the "flight or fight" mode that pain induces. "Fight or flight" tenses the muscles for battle, releases chemicals for strength to fight, and creates a hyper-vigilance, helpful when fighting bears, but not so helpful with ongoing pain.
Sending thoughts and prayers for healing,
Stephanie
if I have not thanked you before , let me do so now. He is also applying for transplant list and been told to drib NEPRO every day, to cut protein and eliminate salt. Have you tried any type of diet that seems to help?