PKD and Constant Pain

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Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 7/3/2009 7:48 AM (GMT -7)   
Does anyone with PKD have a constant pain in their side? My doc said not to worry about it, but of course I am. It has been happening since last September.  It's not bad enough to take a pain pill, but I am getting tired of being in pain. I asked him if an ultra sound would show anything and he said it wasn't necessary. Plus, it has been 12 years since I had a kidney ultra sound. Does this sound odd to you??
 
 
Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/4/2009 5:57 AM (GMT -7)   
Elizabeth..... 1st off I'm so sorry your feeling one of the complications of PKD.  I'm also sorry I didn't post to this lastnight.  I have had some discomfort myself and took a 2 day break from the internet.
 
You really really really need to get a can of your kidneys.  Is this your primary doctor?  Have you ever seen a Nepherologist?  My urologist and nepherologist require I get a scan every six months for life.
 
In the beginning all my doctors never understood my constant annoying discomfort in my flanks.  In the beginning it was just my right side then after a year the left side started to act the same way.  I have had three urologists.  Not until the third one sent me to a nepherologist that I found out constant pain is common.
 
Here are some of the complications I experience that causes pain. Understand though that my PKD is not advanced it has not changed the structure of my kidneys as of yet.
 
Kidney Stones
Tissue blockages
Cysts growing
Cysts breaking
Cysts bleeding
Kidney infections
 
I was not diagnoised with PKD until last december.  It was a long road of the pain getting more and more annoying.  They keep saying I could be on the severe end of normal cycstic kidney and liver.  Duh PKD..  I live in a kinda rural area outside of Nashville and no one likes to label a patient with a Dx around here.
 
Now I see my kidney doc every six months who also refered me to a pain clinic.  I have found relief with sympathetic nerve blocks.  Its helps about 25%.  You might want to look into this procedure if you don't want to take pain meds.  Its helped me enough to not have to increase my pain meds.
 
For your health and comfort please seek another opinion.  Your doctor is not following normal prodical for PKD.  Also PKDcure.org has a wonderful supply of information for doctors and patients.
 
I hope something in this post is helpful and hopefully your 4th of July goes well and safe.
 
Laurie
 
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 7/4/2009 10:16 AM (GMT -7)   
I have been seeing the same nepherologist for the last 10 years. He says the scan will show exactly what he already knows and that I need to deal with the discomfort or take the pain pills. Another problem is that my GI thinks it my PKD and my nepherologist thinks it my Crohns disease causing the pain. I have had CT scans and small bowel follow throughs and several colonoscopies. I think I need to ask more questions so I understand both diseases better. Right now it's my Crohn's that is giving me fits. I need to go on a more powerful med but am afraid of the side effects. I would have to get monthly infusions which scares me. I definitely don't do well with meds. My nepherologist is all for it so I am going to make an appointment next week to see my GI. My biggest fear is not being able to work. Having to take infusions will make me have to admit that I am really sick and I just am not ready to go there. I know..... it even sounds stupid as I am typing it. LOL

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.

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