undearable body ache thru fingertips

[cris]

My Mother started dialysis last Sept. 2007, thru the numerous posts, I have learned what to expect and what to do. Just today, she was really crying and moaning in pain, she said her whole body aches thru fingertips. All her labs are within normal except for the potassium, which she started taking potassium chloride, yesterday after dialysis. Her Kt/V and URR are fine, She has 15% function left, tho she suffers from arthritis. She takes 1/4 of rivotril, which sometimes helps and sometimes not. Gabapentin makes her foggy and high for days. It really breaks my heart over in a far away land to hear her cry, moan for death. If only I could fly and be with her. Prayer isonly my comfort during this time.
Please let me know your experiences on this, Your sharings are very much appreciated.
love,
cris

[aharris2]

Cris,

First, Gabapentin... Renal dosing is VERY different from "normal" dosing. Make sure she's not being overdosed. The effects of overdosing are dramatic (dopey, diminished consciousness, loss of muscle control). We have seen them first hand.

Second, why is your mother in pain? Calciphylaxis starts as severe (extremely severe) pain in places that will suffer lesions later. In Rolando's case, legs, feet, hands and fingers. It might easily be described as "all over". Prompt action is important.

Once the cause of the pain is identified, hopefully it can be controlled with appropriate medication at an appropriate dosage.

[willieandwinnie]

cris, Are they taking too much fluid off her. My husband had the same problems at the center, they would squeeze him dry like a sponge and he was in horrible pain until the next day when he got fluids in. If she is still urinating, they need to allow for that in their fluid removal. Hope things get better for your Mom. 

[KICKSTART]

Another thing it might be is ..gout , i believe this is quite common in renal failure and not just a rich mans disease anymore! I was taking fruisemide a while ago and that gave me a side effect of gout , which can be in most parts of the body , not just the feet. It looks like you are not close by to your mum?,Would it be possible to speak to someone from her renal unit and have a chat about whats shes going through and maybe fight her corner so they try and make her more comfortable ? .Renal failure is not nice at any stage , but she shouldnt be feeling as miserable as she is,someone needs to look into things and try to make her a bit more comfortable.

[Sluff]

cris, I do hope your mom finds some releif from all this pain. I wish I had answers but I don't. The advice from the others sounds like excellent strong advice. Please keep us posted as she searches for the answer.

[rose1999]

Cris, I am sorry to hear this and wish I could help.  Your mum must let her center know about her pain.  I feel for you being so far away, I live close to my Dad and it's bad enough when he's feeling really poorly without being far away. It's no help at alll but please know that we al care for you. 

[Joe Paul]

Knowing your Mother is in pain has to be the hardest thing to endure. I hope someone can figure out whats causing the pain, hopefully then they can get her something for relief. Hang in there, you are in thought and prayer 

[Psim]

I'm sorry she's in so much pain. Hopefully you can get some answers soon. Thinking of you both.

[paris]

I am sorry she is in so much pain.    I have had gout due to kidney disease and it is like broken bones. You don't even want a sheet to touch you. It effects the joints, unusally in the toes and feet.    Could be the fluid, medications--let the doctor know so he can find a solution.  No one should be in constant pain.

[Stacy Without An E]

I really hate hearing stories like this because sometimes your doctor will simply treat your illness but do nothing for your quality of life.

I can't speak for your Mom's pain, but I know that even though I work out regularly I have terrible pain in my muscles and joints, especially in the morning.

And it's getting worse the longer I'm on Dialysis.

Does your Mom have anyone who can speak to the medical staff on her behalf?  Sometimes when you're too ill you can't speak strongly enough for your problems and just want to be left alone.

Take care and good luck.

[cris]

From my heart, thank you so much everyone, you are an extended family to me. I spoke to my Mother this morning and the pain is gone tho she still feels weak. She was able to sleep last night after taking half of rivotril with my sister massaging her whole body. We are only two in the family and we both closely watch Mom's medication. We always discuss with her doctors, and are oftentimes in discussion with the doctors. In fact, her two nephrologists have started surfing the IHD, because of the tremendous knowledge we have asked and given them from this site. My Mom goes in center 2x a week. The most she puts out is only 2.5 of fluids. Most often she would only have 1.5 of output, tho She stays for 4 hrs. Recently, she was into 3x a week due to fluid gains in her lungs with a slight flu, then back to 2x a week. Everytime they pull too much, Mom feels ringing in the ears, blood pressure drops, or cramps. She easily gets fluids in her legs even with the controlled intake, but it will be gone after the session. Mom really resists going to the center, she reasons that the frequency of dialysis makes her more sick. She said as soon as she starts to feel better then she would have to dialyse again and feel crap. I don't know, but it made sense to me that after her dialysis, she's crap, after two days she's up and bright, then it's time to dialyse again and feel crap. There must be an explanation into this. The calcification possibility, I have discussed with her doctor, since she was bruised very easily, but we found out, this is because of heparin. Her calcium intake was already reduced from 3x to once a day due to high calcium lab test.
The fact that I am away in a foreign land, makes it more deppressing. And I thank God for all of you.

[MyssAnne]

Cris, I'm glad your mom is somewhat better.  Thank goodness she got some sleep, that DOES help a lot.

It's a mixed blessing, the dialysis. You're right, she feels horrible because she does it, but it's necessary to pull the toxins out of her body.

I so hope they find something that works for her.

[lorna]

I saw a pain med specialist and he said anyone with kidney problems espically one on hemo or pd should NEVER EVER use gabapention(sorry for spelling) . he said it does not digest at all and causes a severe high and reacts in a really bad way. he sayd oxycontin and gabapoention were the absolute worst for kidney paitents . I know how hard pain can be and hope everything works out for you!