Question for those with Kidney Involvement

[dunkie2202]

My Kidneys are functioning at 16 %. When I stand any longer than 5 mins on my feet it feels as thou my thighs and lower back are swelling up. Then the pain in my lower back starts and nearly drops me to my knees. I have to sit immediately and wait at least 15 mins for the pain to subside. Why is this?
Is it because the kidneys aren't working? I've checked sites on Kidney damage, disease etc and can't find anything to explain this pain.

[Jack]

I suffered from kidney failure, but did not suffer from any symptoms to speak of. I think you should get this checked out by a specialist.

[drz]

My Kidneys are functioning at 16 %. When I stand any longer than 5 mins on my feet it feels as thou my thighs and lower back are swelling up. Then the pain in my lower back starts and nearly drops me to my knees. I have to sit immediately and wait at least 15 mins for the pain to subside. Why is this?
Is it because the kidneys aren't working? I've checked sites on Kidney damage, disease etc and can't find anything to explain this pain.


16% is pretty low and lots of symptoms are likely at that level. Are they talking to you about dialysis to help rid your body of some of toxic build up? My feet were very swollen when my kidney function was down and it took a few weeks for it to go down after the kidneys improved. I now have about 50% function but it ranges from 40%--60% but my feet aren't swollen any more.

[andrew]

Can't say I've ever had those symptoms. I'd definitely get it checked out. Are you on Dialysis currently?

[dunkie2202]

I'm not on Dialysis yet. I'm patiently waiting thou. I've been mapped to have a fistula made and I'm just waiting for a bed in Sydney to get started. My function has been running around 14 to 16 % since I was dx in August. My Kidneys aren't improving and prob won't recover. It's so frustrating... I want to be able to do stuff and can't. The longer I stand and try to ignore the pain the stronger the pain gets until it's unbearable and feels like my back is going to break. My feet and legs swell every time I put them down, or walk or go for a ride in the car. I HATE THIS DAMN DISEASE :predrage:

[Sangye]

I have the exact same thing, dunkie even though I don't have kidney involvement. It's gone on for 4.5 years and is a major impediment to my progress. My docs are out of ideas. I suspect it's from adrenal depletion, but there's nothing really that the docs can do about it even if it is.

I hope your docs can figure it out. Hang in there. :hug2:

[dunkie2202]

Sangye, I went to the drs yesterday and my husband asked about the pain I was getting in my back. It had her stumped, my hubby asked if it was from the excess weight, she said no. I asked could it be from the kidney fuction or lack of it, she said no. Then she said that perhaps and only as a precaution that I should go and have a bone scan in case "Pred" has done some damage. Other than that she really had no idea why I get it. I also asked if its because of the adrenals and she said no.

[Sangye]

A regular doctor is not qualified to assess the spine, and they would have no idea whatsoever about the type of adrenal weakness I'm talking about. It's like asking a plumber for legal advice. I think a bone scan is pretty far-fetched and intrusive at this point. I suggest you see a chiropractor first. My back pain is definitely being caused by all this abdominal weight--classic beer belly syndrome. I have underlying back issues that were never enough to cause pain or dysfunction but are being exacerbated by the weight.

The leg edema remains a mystery in my case.

[drz]

Sangye, I went to the drs yesterday and my husband asked about the pain I was getting in my back. It had her stumped, my hubby asked if it was from the excess weight, she said no. I asked could it be from the kidney fuction or lack of it, she said no. Then she said that perhaps and only as a precaution that I should go and have a bone scan in case "Pred" has done some damage. Other than that she really had no idea why I get it. I also asked if its because of the adrenals and she said no.

Unless there is more to it than what you posted, it sounds like this evaluation didn't help much. Many of us here learned when trying to get our problems diagnosed that you can see a lot of different doctors without getting any help when they don't understand your problems or how to treat them. Can you get a second opinion from another source?

[dunkie2202]

I saw my weg doctor. She is a Nephrologist. She was the one that Diagnosed me from the start and the one that did my biopsy. She is the one handling my weg's.
Sangye what your saying is basically what my husband thinks. The back pain is being caused from the "beer belly" in front. I have suffered with lower back pain for a few years
and I know what caused it. I worked in a Motel for 20 years prior to Weg's, making beds, vaccumming, sweeping, cleaning, carrying heavy loaded breakfast trays up to 300 mtres ( it is a long motel ) I walked backwards and forwards along the motel every day from the rooms to the kitchen and back. So I did have an underlying problem. I did suffer pain with it but I grinned and beared it. But this is worse than labour pain when it hits hard. I just want to know the cause and hopefully something to stop it.

[Sangye]

Australia has some excellent chiropractors. :wink1:

[dunkie2202]

lol Good on ya :smile3: On another note;
I'm off Cytoxin yay me!!!! I start Imuran on the 5th Feb 150mg. I should recieve a phone call shortly after the end of the month to have part 1 of my fistula made.
Neph Dr still would like me to manage as long as possible before starting dialysis. They will be keeping a close watch on all bloods and urine tests. Last weeks results creatinine came down slightly to 260, even though still high it has remained that way for past 4 mths so it has stablized. She's not overlly concerned of my pred weight gain but saaid she will probably start hounding me in about 10 mths time. Only so she can get me lighter for the transplant hopefully in 2012.

[dunkie2202]

My smile didn't work lol silly me it 1 not 3 :smile1:

[Sangye]

WHOOYA for being off cytoxan, Dunkie!! That's a big step. :w00t::thumbsup: