The Pain is Out Of Control

[paul.karen]

 
The last month or so the pain in my lower back due to (PKD) is way out of control.  I am ok with dealing with pain.  But this is CONSTANT and very painful.  I cant lay down on my sides or back at night.  I wake up every 30 minutes or so and it takes all i can muster to roll over. (due to pain shooting through me)
When i go to the bathroom i can barly lift the toilet seat due to pain.  Cant reach into the fridge cant bend cant stand and cant walk well.  All in a one month periode.
And what is worst of all is knowing once i start dialysis in the near future it will not help one bit with the pain or the millions of cysts filling the indside of my kidneys.

i eat 16 or more xtra strength tylenols a day.  I know it isnt good for me.  But it helps a tiny bit.
My neph. doesnt want me to get addicted to painkillers.  Additcion would be much better then the pain i am feeling.  So im lucky my brother gives me painpills when he can.
And knowing the cysts will KEEP GROWING kidneys keep bulging bigger and bigger and the pain will just become worse and worse.  Is getting to me.
Cant they just cut open my kidneys and scoop out the cysts and let them refill over time........
Sorry i rarly complain but it truly hurts and is getting worse.
And heck this didnt make me feel any better 
 

[Wenchie58]

P.K--
   I'm sorry...I would demand something for pain.  I have a pretty high tolerance, but you can't live day to day like that.  Call your neph...and you tell THEM what you want.  Here's hoping you find some relief.  I'll be thinking about you! 

[Lucinda]

Hey Paul....I am really sorry to hear you are in such pain.  I am afraid I am going to be of no help here at all as I don't really suffer too much pain with my kidneys.  It is terrible that you have to take that many painkillers.  I will be really interested to see what others on the site have to say.  I haven't seen too many posts where people have experienced such pain.  I really hope someone here can help. xx

[breezysummerday]

Oh Paul, I'm sorry  
Taking too much Tylenol's can hurt you too.  
Tell your neph how much you are taking.
Getting a script for stronger pain meds to help
you sleep seems therapeutic.  You have educated
yourself about dependency so that is a plus.  

 

[monrein]

Paul, could this mean that your native kidneys need to be removed?  I know that Pelagia's husband ,Stephen, had the double nephrectomy before he was transplanted.  I have no pain from my kidneys but I don't have PKD so that's about all I can think of.  So sorry you're hurting, it sounds awful.   

[nursewratchet]

That is BULLSHIT!!!  Get another neph, if he won't listen to you.  The kidneys can be taken out, and you need a pain pill, (not Tylenol), to take before the pain is totally out of control.  That much Tylenol is a TOXIC dose, and can (will) destroy your liver.  That you don't need on top of this.  Your Dr. needs an inservice in pain management.  True pain needs to be dealt with, and there is no maximum dosage to take care of it.  the dose is whatever it needs to be to get you comfortable, without knocking you out.  Maybe an extended release, 2 time\day dose of Oxycontin, or Extended Morphine, in a small dose.  Pain control should not have pain highs and lows.  He doesn't know what he is doing.  Get another opinion...

[Sunny]

Pain management is a serious issue and your doctor should be paying attention. Saying they don't want you getting addicted is a cop out. They are not dealing with the pain, you are.The fact you would still be dealing with the pain even after starting dialysis is outrageous. It seems maybe they should consider taking the kidneys out knowing you are going to start dialysis. It also seems they should be willing to provide pain meds. Doctors can be such idiots.

[ahamner]

knowing the cysts will KEEP GROWING kidneys keep bulging bigger and bigger and the pain will just become worse and worse.  Is getting to me. Cant they just cut open my kidneys and scoop out the cysts and let them refill over time........

Paul, I also have PKD, been on dialysis, and now have a transplant.  I still have my native kidneys which are greatly enlarged.

The following is an excerpt from Mayoclinic.com on PKD symtoms:  "Pain. Chronic pain, usually located in your back or your side, is a common symptom of polycystic kidney disease. Often, the pain is mild and you can control it with over-the-counter medications containing acetaminophen. For some people, however, the pain is more severe and constant. In rare cases, your doctor may recommend surgery to remove cysts if they're large enough to cause pressure and pain."  My understanding is that this procedure can provide temporary relief.

After you have to get on dialysis you could have your native kidneys removed but if you are still peeing you would lose the ability to naturally remove fluid.  In my case, I didn't have severe pain and I was still peeing so I didn't have my kidneys removed.  Now that I have a transplant, I would like to have my polycystic kidneys removed but I understand that is major surgery because of the greatly enlarged kidneys.  Without the severe pain you are experiencing I haven't been sufficiently motivated to do so.  My father also had PKD and he experienced severe pain as you describe.

Get your nephrologist to explain your options.  I am also a member of a Yahoo Group called PDKCARE where PKD patients discuss and share experiences.  There, you might could get  information from someone who has actually had the surgery to remove or drain large kidney cysts or has found ways to deal with the pain otherwise.

[Wenchie58]

That is BULLSHIT!!!  Get another neph, if he won't listen to you.  The kidneys can be taken out, and you need a pain pill, (not Tylenol), to take before the pain is totally out of control.  That much Tylenol is a TOXIC dose, and can (will) destroy your liver.  That you don't need on top of this.  Your Dr. needs an inservice in pain management.  True pain needs to be dealt with, and there is no maximum dosage to take care of it.  the dose is whatever it needs to be to get you comfortable, without knocking you out.  Maybe an extended release, 2 time\day dose of Oxycontin, or Extended Morphine, in a small dose.  Pain control should not have pain highs and lows.  He doesn't know what he is doing.  Get another opinion...

Don't ya love how our nursewratchet beats around the bush?  She's got the right name eh Vicki?  Listen to her P.K.  she's one smart cookie!

[boxman55]

Oh so let me see Doc, I am in severe pain from PKD soon to be going on dialysis and your worried that I might get addicted to pain meds! Oh my god, I would stike him down a peg, have him walk in your shoes...Boxman

[pelagia]

First off, I am sure that they have checked for an infection or kidney stones, right?  Stephen's brothers, who also have PKD, have had both of these issues and they caused tremendous pain.  One has had chronic pain, occasional bleeding and occasional infections for more than a decade.  The other one had the kidney stones, but that may have been because he was eating foods rich in minerals (he was a vegetarian at the time) and not drinking enough water.  It happened almost 10 years ago and he is the youngest, so he was not thinking too much about his PKD at the time.

Stephen was lucky that he never had a great deal of pain from his kidneys or infections, despite their size (he looked at least 9 months pregnant).  He had more of an issue with the sheer weight and size of the kidneys in his body cavity.  As a result, he had almost no appetite (no room for food?, but maybe could also have been side effects of approaching need for dialysis) and the pressure the kidneys put on his lungs made his breathing became very shallow.  That worried me the most.

When it was approaching time for the transplant, he had his kidneys taken out because the surgeon felt there was no place to safely put the transplant.

Painkillers seem like the way to go if they give you relief and you do not have an infection.  I have read about the surgery to excise some of the cysts.  If it comes to that, I personally think that approach would be a better option than having the kidneys removed, unless there are other mitigating factors (like breathing).  The kidneys are making some contribution to your well being until you take them out or they shut down after dialysis starts, right?  Also there is the issue of the adrenal glands which sit on top of the kidneys.  You want to hold onto those if you can.

Sorry you are in so much pain.  Please get someone to listen to your concerns. 

[paddbear0000]

I'm so sorry about the pain you must endure. If I were you, I'd be calling someone and having those things taken out!!   

[pelagia]

P.K. - one other thing occurred to me since I wrote the last post.  There has been some discussion in the medical literature about the role soy products and omega 3 fatty acids might play in reducing inflammation in PKD.  I did a quick scan of what's out since I last looked probably 2 years ago now.  It still points in the same direction.  Diet may make a difference.

We've been drinking soy milk and taking fish oil, as well as CLA (conjugated linoleic acid), in our house for many years. (I also take vitamin E for breast cyst inflammation, which would probably go away if I would give up caffeine). The docs said it's okay, that it can't hurt, and it might help to reduce inflammation in Stephen's kidneys (when he had them!).  So many diseases these days are linked to inflammatory responses, and diet is one thing we have some control over.  Inflammation is also a big factor in cardiovascular disease, so anything you can do to cut down on inflammatory responses should be a good thing.  If you are on a pre-dialysis or dialysis diet I realize that this all becomes more complicated.

You can find the inflammation factors for your foods by visiting this site (e.g. example is salmon, which is highly anti-inflammatory):

http://www.nutritiondata.com/facts/finfish-and-shellfish-products/4231/2

and a little more info here on diet to modify inflammation:

http://nutrition.about.com/od/dietsformedicaldisorders/a/antiinflamfood.htm

I hope you get some relief soon. 

[okarol]

My hubby has long term pain control for chronic pain - it's no easy solution. The drugs have their own set of problems. I am sorry Paul, I hope you get some relief soon.

[Sluff]

Same sentiments here Paul, I hope you get some relief soon.

[paul.karen]

Thank you all for your input.
I am making an appt. to see my neph today.  I will demand something for pain.  And i want to look into having the kidneys drained or scooped out.
I have good urine output so having them removed may be a last option.  But still an option.
I will look into the threads provided to me and i appreciate all your toughts on this issue.

P&K

[kimcanada]

Good luck today Paul, I feel for you, this disease sucks enough without daily pain...

Will be hoping for the best for you

Kim

[willieandwinnie]

Thinking about you today and pray you get some relief from the pain. 

[paris]

Sometimes I feel the doctors get so focused on one issue that they don't really hear us.  You shouldn't be in this much pain.   I hope the doctor really listens to you and help you find relief.

[thegrammalady]

i oh so agree with paris. if 97% of the time people respond in a certain way to a problem doctors are so focused there that they ignore the 3% that respond differently, you have to fight with them to look in a different direction.  hope you can resolve this and get some relief soon.

[okarol]

I found this http://www.ucurology.org/areas-of-specialization/polycystic-kidney-disease - never heard about the nerve approach - hopefully it will help patients in the future.

[paul.karen]

Great article Okarol.

Hopefully they will have this approach on the market in the near future.
Interseting how it can slow the whole process of cyst making and even slow down the destruction of the kidneys as well as take away the pain.

[nursewratchet]

Well, what happened at the Dr. today???

[mcjane]

I cannot believe that your doctor said he does not want to give you stronger pain medication because it's addictive. . He has no right to make that decision. Demand it Paul, you can get in far more trouble with the amount of Tylenol your taking. You need to have a serious talk with him and set things straight.

[MIbarra]

Hoping you received some solutions to the pain!