Hey Steve ,
My father used to have them at esrd ...it happens because of electrolytes imbalance ...
I am 28 years old...diagnosed one year ago...can I ask you
Other then that - how do you feel ? did you have a lot of symptoms because of the disease ?

wish you well!

Hi Steve,

I have a lot of cramp in my feet. I'm stage 4 and no reason has been found for it. I think it may be because of poor circulation.

I'm between stage 3 and 4 and suffer from cramps all the time in the evening when I get into bed. Mostly feet, but a lot in the legs also. I know we're supposed to stay away from potassium, but I've found that when I start having a lot of cramps eating foods high in potassium help them to ease up for a while. I think that maybe we have a hard time regulating our potassium and cramps get worse when we're low on it. Works for me anyway...

I had muscle cramping at various stages of CKD and was getting still getting them post liver/kidney transplant as well (got my transplanted organs 5 months ago today!). Except for while I was in ESRD (no dialysis thank goodness), it was usually due to low magnesium, although I was on potassium supplements for an extended period of time as well because my kidneys decided that until my GFR hit about 13 they weren't going to allow my body to hold on to potassium. Back then bananas and orange juice, along with fresh tomatoes were my friend and intake was based on my lab results.

Alas the muscle cramps continued and even worsened post transplant (liver and kidney), but that's due primarily to the Prilosec and later Prevacid I was put on for serious ulcerations of my entire GI tract thanks to the CellCept which I no longer take (I'm on Imuran (aka azathioprine instead). I recently stopped the Prevacid and the muscle cramps are almost gone (it's only been 4 days so it's going to take time for my Mg levels to get back to normal). At least I haven't been woken up from a deep sleep due to muscle cramps for the last couple of days, which is a blessing as the Prograf can also cause low magnesium levels and is definitely contributing to my insomnia!

All PPIs (proton pump inhibitors) such as Prilosec, Prevacid and Protoninc (and probably Aciphex as well) cause hypomagnesia in patients with normal kidney function; just imagine what they do in those of us with less than optimal kidney function! If you're on one, please talk with your doctor about changing to a different type of medication if possible (if you're taking one for reflux, perhaps a medication like Zantac or another H2 blocker would work just as well, and not give you muscle cramps as well). Watching your labs and when your Mg or potassium levels are low will also help. If they're low, eat something high in potassium (such as bananas, OJ, and tomatoes) or magnesium (nuts are high, as are a few other foods but I can't recall which ones). Don't overdo it, but diet can make a huge difference and it beats taking another supplement that insurance won't pay for!

I wish you well!
Ruth (aka ihavepkd but had to reregister as ihavepkd2 due to the system not taking my email address)

Thanks all for the replies.

Hi PKDIL. I am more easily tired now. I can still do things like mow the yard, but that might be enough activity for the day.

Really up to the last year it has been pretty minor otherwise. Most people wouldn't have been able to tell I had anything going on.

I have had cyst ruptures (blood in urine, etc..) maybe a total of 15 times over the years. Usually for a couple days, and thankfully, only a couple of them were really painful.

Really, that's about it. I have a super-positive attitude most of the time. Love my job, get along well with everyone, etc... I kind of think that all helps me not have to also work through any/much of a mental aspect to PKD/ESRD.

Ruth, I can't tell you how pleased I am to hear from you! So, you finally received new your new kidney and liver. That's brilliant news. It sounds like it hasn't been an easy ride, but you're back on Daily Strength to tell the tale. I'd really like to hear all about your experience, especially since I'm heading down that road myself. I'm at 23% function and beginning to discuss treatment options i.e. a dual transplant. It's quite scary, but the fact that you've gone through it is very encouraging. I hope you're feeling well now and look forward to your posts.
Chewitt
(How gentle do the hugs still need to be? Mine, of course, need to be very gentle).

PKDIL,

I kind of forgot to mention the general pain that I have and difficulty bending, etc..

The pain for me is more like a modest ache, like a 2 or 3 out of 10 except for cyst ruptures. Not really too bad, and I usually don't really get bothered by it.

Twisting and bending simultaneously is not an option. I can still bend straight, but is not the best. My kidneys are both pretty large. That is why I am having double nephrectomy pre-transplant.

Ruth, congrats on the transplants!

ThankfullyI don't have to take any PPIs. Maybe it is my non-spicyMidwestern diet. Ha.

Yes, absolutely. I'm at 15% gfr and have noticed significant increase with cramping in my feet, ankles, hands and sometimes calves. I've always heard that muscle cramps are due to low magnesium, so usually I try to take a magnesium supplement for awhile and the cramping goes away. But I'm on the live donor transplant list and I'm not allowed to change my needs, so I have to just live with it. I also have terrible heartburn that I require Prevacid and Zantac to battle, gastroparesis requiring reglan and Zofran and two blood pressure meds. So I never know if it's not one of those causing the problem either.