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caseyk (@caseyk)

Flank pain from PKD

Kidney & Bladder | Last Active: Apr 30 5:42am | Replies (13)

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@kzeiss

My son has end stage PKD but is not yet on dialysis. He has an extraordinary tolerance for pain. He is having and has has excruciating pain from burst cysts and gout. He does not want to take opioids. Is there anyone who has such severe# pain? Is there any medication that helped?

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Replies to "My son has end stage PKD but is not yet on dialysis. He has an extraordinary..."

Good evening @kzeiss, I am very concerned about your son. I have some kidney issues and know what it means when you have a syndrome of pain. Unfortunately, I am not a medication person either. I have been called the "pain warrior". I do think that our body accepts and tolerates a certain amount of consistent pain. For excruciating pain, I use medical cannabis and have done that for several years.

In fact, at this point, my chronic pain is managed totally by tinctures and topicals. I am happy to share additional information. I just need to know your son's age and his location.

May you have peace and ease.
Chris

@kzeiss,
I am concerned about your son's excruciating pain and that you have mentioned his high tolerance for it. Pain that is associated with a kidney condition and end stage kidney disease can be serious. I have searched this morning, and found this information on Mayo Clinic Patient Care & Health Information > Diseases & Conditions.
Pain –
"You might be able to control the pain of polycystic kidney disease with over-the-counter medications containing acetaminophen. For some people, however, the pain is more severe and constant. Your doctor might recommend a procedure using a needle to draw out cyst fluid and inject a medication (sclerosing agent) to shrink kidney cysts. Or you may need surgery to remove cysts if they're large enough to cause pressure and pain."…
You can access the complete article by going to this link.
https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/diagnosis-treatment/drc-20352825
@kzeiss, Has his pain increased suddenly? Is he in contact with his doctor about this? Is he a candidate for a future transplant?

@jolinda, @jennifer0726, @stephanierp, What has been your pain experience with PKD? How was it managed?