2 questions: Pain and water related

[kit78]

I've been on dialysis now for 6 months. I've developed painful hands, feet, knees and across my collarbone.  I am very sedentary but working at moving around more, other that errands and housework. To stand up is painful on the feet till I get going.  I know I have pinched nerves in my feet but this is different from that pain. I do get vitamin D and Epogen at dialysis.  My knuckles hurt so much I think it feels like arthritis. Not sure.  Doc wants to do complete blood workup and asked if anyone in my family had lupus.  The clinic manager said how dialysis effects the body and causes bone disease. I thought that's why they give you the vitamin D??  to prevent it is what I was told months ago.  I've been given so much incorrect info over the months is why I am asking here, people with experience.
Next one is water. I'm told no more than one liter a day.  Lately my BP has been low and they can not remove the correct amount which makes me think and feel like I'm holding water. I'm not puffy or anything but my hands feel tight but that could also be whatever is causing my hands to hurt.  They tried one day to remove 2.5 but my BP dropped and I was sweating, pale and wanted to jump out of the chair.  Once they gave me 300 back I felt better.  I'm scared they are not taking enough water off and it's going to lead to trouble.  How do you get around this?  I know I do my liter a day plus...I'm a waterholic and this is very hard for me to limit.
If you've had these issue, please advise as any help would be deeply appreciated.  Thanks.

[Joe]

I'm starting to notice pain in my feet too. My Neph thinks it's likely Renal Neuropathy and has aksed how bad it is, leading to a change or add to my medication to try and mediate it some. I've told him it's not that bad yet, so we are just watching to see if it gets worse. Don't know if that is going to explain what is going on with you, but he didn't seem surprised it was happening.

As for your retaining fluid, my first indicator that is going on is my weight. If I start to retain, my weight will go up by 3 or more pounds in a day. I then know I need to change my PD solution mix and get some of the extra fluid off.

Not sure I'm giving you what you need, but it's the best I have for now. Good luck!

[kit78]

Thanks Joe.  May I ask what PD solution is?  Not familiar with all the terms yet.

[Joe]

My PD solutions come in 3 strengths; 1.5%, 2.5% and 4.25%. You see most folks refer to them as yellow, green and red respectively. They indicate the strength of the PD solution being used and how hard the solution will pull fluid off your system. My typical usage is yellow and greens, but occasionally I need to use a red to pull a lot of fluid off. Doesn't happen often, but when it is necessary, it works.

[Riki]

Joe, you're probably confusing her more. *G*  It sounds like she's on hemo, so changing solutions isn't going to work for her.

Kit, do you still pee??  If you do, it's possible that you don't need to take off as much, as what function you still have is removing fluid, so when you go on the machine, you might be taking too much fluid off.  That would cause your bp to drop.

I'm not sure about the pain.  I have knee and other joint pain, but I've been on dialysis 8 and a half years.  I haven't really been diligent with my binders, so I think that's probably my problem.  How is your calcium and phosphorus levels?   If they are out of whack, sometimes that can cause pain.