Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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When I bend it hurts

tryn2bpositive
tryn2bpositive
When I bend it hurts, when I twist it hurts...it hurts if I lie on my side...I tell ya, I am so tired of being uncomfortable!
The last 3 days have been rough, thank goodness today is better. It's amazing what heavy narcotics can do for a person. I debated whether I would go to ER most of the day yesterday but to what point? Tests that show my kidneys are still functioning but not bad enough to require intervention. More pain meds, water and send me on my way? What a waste of time. I've dealt with the kidney stone pain but this kidney pain brings pain to a whole new dimension!
I have to admit, it's my own fault cuz I went off my strict regime. I have been doing so well this last year too. I just had no idea how debilitating the consequences would be cuz I had myself convinced I was fine...not, so, am back on the regime. I just hope I didn't totally mess myself up.
So, is this the beginning of the end? Is this how the disease progresses? I am scared and I don't like hurtin like this but I do need to know if this is what to expect so that I can plan my life accordingly. Thanks for any advice. And, happy new year.
deleted_user
deleted_user
"doctor, it hurts when I do this"
reply, "don't do it".
I've had pain when I bend at times, I'm sure many people do for various reasons, muscular, back pain, stomach problems. I never concerned myself too much about it and, lo and behold, a few days later the pain was gone.
can you be making too much of this?
rogerjd
rogerjd
Unofrtunaltly some of us with this disease do suffer with constant consistent pain to differing degrees. Mine became increasingly bad, so like you, could't bend or twist so normal everyday things like showering became difficult as lifting my arms above my head caused stretcing pains in abdomen. Toilet hygeine was difficult because I struggled to manouvre- and shaving my legs- forget about it. Some of us struggle with this pain throughout life and some of us don't. No-one can tell you whether this will continue in yur case. You really need a scan for some dort to determine exactly what is causing the pain. Is it enlarged organs, or large or multiple cysts etc? Then you may be able to consider options for pain managment. Goood Luck x
deleted_user
deleted_user
I'm sorry to hear you're so uncomfortable. my husband is feeling a lot of discomfort as well. his comes and goes with ruptured cysts (and is really intense when that happens) and then there is the dull reminder the rest of the time - for him, sleeping is hardest because no matter how he lies down there is always pressure on his kidneys so he's uncomfortable.

Please don't blame yourself. It sounds like you generally take good care of yourself, I'm not a doctor by any means, but I don't think coming off your strict regime is causing things to change, probably just PKD doing it's thing.

my husband also avoids ER whenever possible, they're generally not very helpful anyways (once he passed a kidney stone while waiting in emerge - he gave it to them in a tiny cup for it to get tested - and they lost it! but he does ask these questions to his doctor at his next appointment.

thinking of you and hoping things settle down soon.
tryn2bpositive
tryn2bpositive
Thanks so much for all the comments. I can deal with the having PKD most of the time. I get thrown for a loop when things are 'different' and the pain gets exacerberated when I move - cuz it's not supposed to do that - or when I lie down - cuz it's not supposed to do that. The exhaustion adds to the frazzle cuz I can't sleep
I'm better today, day 4 of watching my protein portions per meal, limiting meat, avoiding certain foods, eating soups, lemon water juices and long soaks in the tub. Still sore but I can wiggle around and did some light calisthenics, which is more than I could do! I know I'm fortunate cuz my onset was late in life - 50s - and I have been really able to control the kidney stone production this last year, so, that has been a blessing. Tryin to stay positive and forward focused but it's hard on days like yesterday cuz the fear creeps in and the little voice in my head asks is this how it's goin to be? Thanks again. You have no idea how much your support helps me.
deleted_user
deleted_user
Tryn, what is your GFR? I keep wondering at what GFR do people start having problems. I get the feeling from what I read that everyone is different. I tend to forget that I have a PKD problem until unexpected pain shows up. Pain has a way of helping one remember. What always scares me the most is not knowing if it''s kidney related or something else. Shortly before Christmas, I developed a strange pain right at the bottom tip of my right ribcage that radiated around to my back. There were times I could push on the area and feel nothing and other times I barely brushed the area and I about went through the roof. Luckily, it disappeared after about two weeks of constant worry and has left me wondering about the cause. I, too, wondered if that was the start to worse problems. Luckily, I'm doing much better now. I hope your pain ends soon so you can get to feeling better. Spiderwoman, I had to laugh at your response. That's the one I usually gave my kids and now grandkids when they made a comment like that. I think we have the same humor.