aches and pains ?? --- with CKD stage 4

[shaz53]

Hi again , I have Proteinuria , stage 4 kidney CKD with I kidney working at 24%, now I have to cut down on sugar, salt , Potassium , my creatinine and uria are high ,

has anyone experiences aches and pains ??

[Hidden]

I'm very low stage IV or very high stage V. I've got 15% function with creatinine of 3.2--just recently plummeted to this level from about 28% function with creatinine of 2.1.

I am a diabetic and so watch carbs all the time anyway. I am on both potassium and fluid restrictions. It's 2000 mg potassium daily and 60 fluid oz of beverage (it's generally water) a day.

When I have more fluid retention I get stiff and may experience some aches and pains. But I've had a lot of trouble with low sodium and dehydration. The majority of the pain I experience is clearly related to dehydration. It's flank pain and aching in my hips and knee joints. My body tends to retain fluid in my hip and knee joints so that may be what's leading to that pain. Anyway, when my hydration is better I don't retain much fluid and the aches and pain go away.

I wouldn't say I have a lot of pain but do notice it some with the hydration issues. Occasionally I take 1 regular strength Tylenol as I go to bed to relieve the pain so I can sleep--maybe 1-2 nights every 5-6 months. So this is pretty infrequent for me, thankfully. My doctors have said it's fine for me to use Tylenol as needed for pain so that seems to be a safe option. But I would think you'd want to check with your doctors before using it just to be sure it's okey for you.

Best wishes,

Margie

[shaz53 in reply to Hidden]

thank you Hidden for you reply , I get lots of Kidney infections and I have been down to 11% but am up again but the doctors are worried I may get more infections like I have now and colds and flues are bad to get

they say I need to loss weight as well

[Hidden in reply to shaz53]

Your response gives me some hope that I may get a little more function back. My function plummeted to 10% this past December when I got the stomach flu. I've also had 2 kidney infections over the past 3 years. My nephrologist has referred me in to the nephrology program at KU Med Center. Im in a holding pattern until that appointment on Aug 16th. I'm hoping they will be able to recoup a little more renal function.

Margie

[shaz53]

Hi Hidden

I find having a bath and a soak in Epsom salts which helps with the aches and pains and also they say it helps with the kidney too

another tip that I was given was , the last time I had an infection My function plummeted too --- the specialist said never have a blood test when you have an infection , do it after it is gone because your level will always go down when unwell

[Hidden in reply to shaz53]

I've had several renal panels run since I've gotten past the flu. They showed some improvement (4.2 to 3.4). But their not back to 1.8-2.2 where they had run consistently for the past 4 years. I'm hoping the nephrologist at KU Med will be able to pull them back to the earlier creatinine level.

For me, each time my kidneys have plummeted I've experienced extreme, severe dehydration. So that's got to be a major factor for me. My current nephrologist thinks my chronic dehydration is due to a chronic sodium deficiency.

So, I'm still a little hopeful. But I'm also trying to wrap my brain around the likelihood of dialysis in the not too distant future. The good news on that front is that I'd be able to use PD dialysis. I can do this at home even though I live alone. I could also do this at night so it wouldn't really interfere much in my daily life.

Of course, it would be MUCH better if my kidneys would pull back into low stage III or high stage IV level. My appointment is Aug 16th so I've got several weeks to wait this out.

[shaz53 in reply to Hidden]

got my fingers crossed for you Hidden

My biggest problem is Proteinuria,

[Hidden in reply to shaz53]

Thanks, dhaz53

[worldnurse1]

Hi. Also CKD stage 4. Definite proteinuria. Creatinine high for many years, as is BUN: gfr abnormally low. On transplant list. I don't have areas of pain but, yes, achy areas. It's hard to say though if it's kidney-related, or muscle aches, or even a little of both. Mostly it's occasional aches at lower or upper back. Hope this helps.

[shaz53 in reply to worldnurse1]

thank you worldnurse1

I have proteinuria. Creatinine high for many years, as is BUN: gfr abnormally low. -- me too and my iron is 700 as well

On transplant list-- I am on no list for anything yet , sometimes I think the specialist is not worried but , how low does it go to be worried

[worldnurse1]

Different MD's, and different Nephrologists, have different opinions as to how to proceed to treat kidney problems. Conventional wisdom has it that there is no cure for CKD, and the only treatments available are dialysis and transplant. Both my former and current Nephrologists agreed that if you're dehydrated this can stress out your kidneys, and throw your lab values off more. My problem is that when I explained to my former Nephrologist (and my General Practitioner) symptoms I was having that may be related to the CKD, they would (rather insensitivitly) parrot "Dialysis!, Dialysis!, Dialysis!" They showed no empathy for the fact that they were recommending I endure a procedure requiring I be stuck with needles 3 times a week for the rest of my life. It was the lack of compassionate empathy I found disturbing (even if I were to wind up choosing dialysis). I was referred to a world-renowned Nephrologist who said the latest thinking that if you're still urinating, you don't have to rush into dialysis; But he did recommend I get on the Transplant list, which I did. Hope this helps. Please continue to give your feedback.