I have PKD and have a GFR of 26, stage 4. I also have Crohn's disease. I have been having a lot of flank pain below ribs/sides and am wondering if it is cyst pain. Has anyone had the same experience? Thank you!
Hi @caseyk
I am sorry to hear you are suffering, I have heard of lots of PKD patients having similar pain.
I had PKD too but was able to have my giant old kidneys removed at the same time as my transplant at Mayo Clinic in Rochester (you can see my posts on it under Transplant). Because PKD kidneys continue to grow in size this may be a good option for you too, it may be a solution to your pain.
Good luck and I hope you find relief soon,
Jolinda
Hi @caseyk
I am sorry to hear you are suffering, I have heard of lots of PKD patients having similar pain.
I had PKD too but was able to have my giant old kidneys removed at the same time as my transplant at Mayo Clinic in Rochester (you can see my posts on it under Transplant). Because PKD kidneys continue to grow in size this may be a good option for you too, it may be a solution to your pain.
Good luck and I hope you find relief soon,
Jolinda
Thank you for your reply. Most people say you only get back pain from kidneys and I don't want to change my Crohns meds if the pain is fron my cysts. How far along were you when you started experiencing cyst pain on a regular basis?
When I was at stage 4 like you are now I felt pretty bad in general, after transplant I feel great.
Are you in the process of looking for a kidney donor, is that something that is right for you?
When I was at stage 4 like you are now I felt pretty bad in general, after transplant I feel great.
Are you in the process of looking for a kidney donor, is that something that is right for you?
I'm not to that point yet. My dad had PKD and he passed from a heart attack in 2001 so I don't have anyone to talk to who has been in this situation. Both my girls 25 and 29 also have PKD so I feel I need to be a good role model and get more informed. I have a new nephrologist that I see in February so I have a lot of questions to ask.
I'm not to that point yet. My dad had PKD and he passed from a heart attack in 2001 so I don't have anyone to talk to who has been in this situation. Both my girls 25 and 29 also have PKD so I feel I need to be a good role model and get more informed. I have a new nephrologist that I see in February so I have a lot of questions to ask.
I remember how scary it was going through the process, but you are not alone…we are here as a whole community of people to support you. I'm sorry to hear that your daughter's have PKD too, t might be helpful to bring them with you to your appointment so they can learn new information at the same time. Do you have a list of questions ready for your new Dr?
I have more quesitons than I did the first time I saw him. My old doctor would tell me I am doing great and to keep up the good work. I became very complacent and watched my diet, took my bp meds, and didn't give it much thought. When I saw my new doc for the first time he told me that my disease is progressing more rapidly and sent me for an ultra sound. He asked me if I had any questions but I couldn't think of any because I was kind of in shock. I go back to him at the end of the month.
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?
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?
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.
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.
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?
@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?
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
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Hi @caseyk
I am sorry to hear you are suffering, I have heard of lots of PKD patients having similar pain.
I had PKD too but was able to have my giant old kidneys removed at the same time as my transplant at Mayo Clinic in Rochester (you can see my posts on it under Transplant). Because PKD kidneys continue to grow in size this may be a good option for you too, it may be a solution to your pain.
Good luck and I hope you find relief soon,
Jolinda
Thank you for your reply. Most people say you only get back pain from kidneys and I don't want to change my Crohns meds if the pain is fron my cysts. How far along were you when you started experiencing cyst pain on a regular basis?
When I was at stage 4 like you are now I felt pretty bad in general, after transplant I feel great.
Are you in the process of looking for a kidney donor, is that something that is right for you?
I'm not to that point yet. My dad had PKD and he passed from a heart attack in 2001 so I don't have anyone to talk to who has been in this situation. Both my girls 25 and 29 also have PKD so I feel I need to be a good role model and get more informed. I have a new nephrologist that I see in February so I have a lot of questions to ask.
I remember how scary it was going through the process, but you are not alone…we are here as a whole community of people to support you. I'm sorry to hear that your daughter's have PKD too, t might be helpful to bring them with you to your appointment so they can learn new information at the same time. Do you have a list of questions ready for your new Dr?
I have more quesitons than I did the first time I saw him. My old doctor would tell me I am doing great and to keep up the good work. I became very complacent and watched my diet, took my bp meds, and didn't give it much thought. When I saw my new doc for the first time he told me that my disease is progressing more rapidly and sent me for an ultra sound. He asked me if I had any questions but I couldn't think of any because I was kind of in shock. I go back to him at the end of the month.
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?
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
Thank you so much for such an empathetic and caring suggestion.
Cathy
@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?
Thank you for your caring comments and your recommend websites.Your concerns and suggestions are very greatly appreciated.
Cathy
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