I need some help with this

[Bassetmommer]

I am having the most painful but weird cramping. It is only a night and it is getting worse, not better. Yesterday I had them and I did not have dialysis because we infiltrated the fistula, AGAIN. We thought it was the iron I was taking, but I stopped that last week.

These cramps are not in my calves. They are in my feet and ankles. They start out with a dull ache and then my foot locks up and twists and the ankle looks like someone sucked all the air out of my body. I also get them in my inner thigh, which is terribly painful and yesterday I had one in my hamstring. I also get them occasionally in my hand and wrist. Like right now, my wrist is aching.

My sodium is fine. Calcium and potassium is fine. iPTH has come way down since I started dialysis. most all numbers are stable or better. Except for phosphorus, which got to 7.2. But I have been on a binder for a while now and should be better. I still pee and a lot. Clearance is fabulous.

I do not take off any fluid during dialysis. I have no fluid restrictions and really try to hydrate sensibly. I have absolutely no edema, just the opposite.

Help!

[horsie63]

Have you tried pickle juice? Salt tabs? Runners with cramps swear by this: amazon.com/Theraworx-Relief...

Could you be dehydrated? Pedialyte is good as it replaces electrolytes and again runners use this. I don't get cramps so I can't say what I use but I sure hope you find relief.

[Bassetmommer in reply to horsie63]

I did try pickle juice, nope. Pedialyte is sodium and potassium, Nep said do not use. Could be I am still dehydrated. There is such a balance about drinking and then peeing all night. I often trigger the cramps when I go to get up to pee.

[horsie63 in reply to Bassetmommer]

Is it possible it's some type of autoimmune disease...Lupus or Rheumatoid Arthritis? I have one and am likely to get another, probably lupus as that runs in my dad's side of the family and I got his cholesterol issue and BP

[chicablue]

I've heard of others with similar problems getting some relief from drinking pickle juice. Can you get your magnesium checked? Sounds l'ike dialysis is cleaning out too much of something you need.

[Bassetmommer in reply to chicablue]

I take magnesium every night and was taking 400 for a while but cut that back to the 200 I have been taking for years. Even with the 400, still had cramps. I will message you later. Could to see you here!

[jodaer]

I might have the same deal going on. Does the pain come in waves? I liken it to something like labor pains. They start out with a tinge and build up to sometimes excruciating pain and then backs off. Not sure what causes it but some thought is it might be a type of neuropathy due to diabetes or maybe, as I've just discovered, clogged arteries in your leg.

[Darlenia in reply to jodaer]

Medical folks often ask my diabetic hubby if he's experiencing issues like yours. I just researched and saw those cramps happen more at night too. Think the cramping mostly occurs in the extremities. Diabetes does close down vessels. As my hubby discovered - also in the heart. Diabetes desperately needs a cure.

[jodaer in reply to Darlenia]

What helps me most of the time is I sit on the edge of the bed and it seems to help with the pain. Usually, it goes away in a minute or two and i can get back to sleep for a couple of hours, then repeat. I'm scheduled for an angiogram in March.

[Darlenia in reply to jodaer]

I feel for you - and all diabetics. The vascular treatments, if it goes that way, have come a long ways. We're so grateful that we're living in this century. Stay strong, stay positive!

[Bassetmommer in reply to jodaer]

yes its comes on and sometime waves. But it is not neuropathy. Its lack of fluids I am pretty sure. Last night, one small calf ramp and that was it. No dialysis since Monday and I had saline given to me yesterday as part of an infusion. My weight is back to where it was. I was down a couple of kgs.

[Bassetmommer]

Nope not because of diabetes. AT all. This just started about three weeks ago, when I was doing every treatment with no skips. I had an infusion today for my PsA and they added fluid. I felt better after that and no cramps. We will see what happens tonight. I know that no matter what I do, I am removing some fluid during dialysis, no matter what they say because my weigh often drops a bit after dialysis.

[Darlenia in reply to Bassetmommer]

That's great! Having a good quality of life is important!

[Mich1949 in reply to Bassetmommer]

That makes sense - I was going to suggest dehydration, but when you said you drink plenty, I thought I must be wrong.Strangely enough, I am experimenting with fluid. I am already 2 kgs under my assumed dry weight, because I was convinced the nursing staff had judged it incorrectly. If I was dehydrated, I would have expected to get cramps.

Trying to gauge the dry weight is very hit and miss - and, of course, carrying fluid is bad for the heart.

There are so many aspects of dialysis I really struggle with. I no longer pee, so fluid is a big thing with me. I often have 3 litres removed each session, which seems like much more than others do, even though I restrict drinking to about 800 MLS a day.

Any one else here have that problem?

[Bassetmommer in reply to Mich1949]

NO fluid is removed for me on dialysis. But I have noticed my weight after is often down a bit. So I am losing fluids.

[Mich1949 in reply to Bassetmommer]

Ouch

[jodaer]

I hope you can figure it out and find a way to deal with it/get rid of it.

[Jayhawker]

Bassetmommer, I wasn’t on dialysis when I got very similar cramps. My feet did what you describe along with inner thigh cramps. Mine we’re related to major fluid shifts. Like you I had no trouble with fluid retention. I wasn’t on dialysis at the time. However, I was learning to manage my type II diabetes without meds at the time so experienced more significant shifts in my glucose levels leading to major fluid shifts.

My nephrologist also kept a close eye on my sodium and potassium levels when I was experiencing this. He also said that many dialysis patients said that tonic water helped minimize muscle cramping. So I started drinking 12 fluid ounces of tonic water every evening. I’m not sure if it was the tonic water specifically or the additional fluid intake, but a few days after I started drinking tonic water my muscle cramps decreased significantly.

Jayhawker

[Bassetmommer in reply to Jayhawker]

HI, I did check my sodium and potassium levels from the last lab in February. Unless things have changed since then, both were in range. I think I am just very dehydrated and water is not fixing it. Oh and I also eat pretzels to make sure I have enough salt now since I do not cook with it.

[Jayhawker in reply to Bassetmommer]

Magnesium is the other thing I’d keep a close eye on. But you indicated that you already take magnesium daily so I suspect that may nit be an issue for you.

Jayhawker

[StillVertical]

I hear ya. There is a fine line that we as dialysis patients are on borrowed time, especially hydrated/dehydrated. That line may not be told or gleamed, but its there, once you cross, it's a shiznit storm The time will come, when you can determine your hydrated number. They are taking you much to deep in the less hydrated side. Do not take electrolytes, it will further knock you around. Just drink 8 oz super cold water. That glass of water might even be your high peak of the day.

Example, Rib cage just hits (you are awakened), bam, clutching side, trying to stretch. Top of foot, bam, its outta control. Funniest thing, the smallest of muscle are the worst. Again, you are too far down in the water cycle. I don't care what doctors say, you know your body better than anyone.

[Bassetmommer in reply to StillVertical]

I think you are absolutely correct. Even though I am not taking fluid off, I am dehydrated. yesterday I had an infusion and at the end, they give my saline. Not a lot, maybe 50cc. But it makes all the difference. Last night was the first night I slept. I had one very brief charlie in my calf which was due to position but immediately was better and then nothing for the rest of the night. I am going to try to give myself saline during my treatment and see if that helps. I do drink maybe 48 ounces or more of water after treatment, but clearly I need more or saline.

Thanks for the reply.

[drmind]

I'm so sorry you're going through this. My left leg will cramp up and awake me with a jolt and incredible pain. I've tried all kinds of home remedies, and nothing works. I believe mine is related to dehydration. Although all my labs are always "normal", i slip up on drinking my water and bingo, the cramps are back. Im.not on dialysis (egfr=31). Basically I think it has a lot to do with sodium, too. I found The balance between sodium and water intake for me is key and its not always easy to manage. Hope you get relief soon.

[RonZone in reply to drmind]

I wish there was a way to "check" your water level, like the oil in your car. How do we know when we have not enough, or too much water in us? Not like we have a "water gauge" attached to us.

[drmind in reply to RonZone]

Oh, I totally agree. My neph doctor points to a bottle of water on his desk and tells me one every hour. I think to myself that this man is nuts! If I drink 5 to 6 glasses of water a day, I feel I've accomplished my goal. However, I find it very difficult to do this as I simply forget as I go about my daily stuff or run errands. I'm usually at 4 almost 5 glasses and its bedtime. Then, its the bathroom parade. If I drink 6 glasses, I'm up to the bathroom at least e to 5 times and getting back to sleep is not always easy. I guess I'm lucky because if I only do 3 glasses or less, I start to itch the next day and may get a weird cramp in my hand/fingers or some at night. These are my water gauges.

My lab work always shows that my sodium is at low normal. My GP commented that I must be drinking a lot of water. Frankly, I'm not but didn't share this with him. Can I assume that what I'm drinking is adequate given this normal rating??? Right now, I set my goal at six glasses and I'm overjoyed if I make it. I think everyone has to determine what's good for them by however they can. Right now its almost 5 pm where I live and so far and Ive only had 2-1/2 halves glasses of water. I'm so very behind and will be chugging along for the rest of the evening. I wish there was an easier way to do it. Good luck for locating your water intake level.

[Bassetmommer in reply to drmind]

There is an app you can put on your phone that alarms you and tells you to drink. That might help. But I am with you about the night time bathroom trips.

[drmind in reply to Bassetmommer]

Thanks for the tip, but I can set alarms on my cell and I do to remind me to take an afternoon med. I don't for water. I have a plastic jug that holds 3 glasses. If i can finish thst before 1 pm along with my morning coffee, I'm ahead of the game. And, that's an "if.." I just wish it wasn't so bothersome for me. I'm going to stop complaining now and just be grateful that I have fresh water to drink. I feel stupid now thinking of the people in other parts of the world who wished they had our problem. Best to everyone

[Beachgirl32]

I have got cramps like that before . My doctor gave me permission to drink pedalite at those time and it help me it was when to much fluid was being pull off my feet would cramp so bad I couldn’t stand on then . So I always keep a bottle in my refrigerator for emergency he told me don’t take it often .

[Bassetmommer]

Thanks so much everyone for your sage advice. Found out today what the culprit is. Even though I am not having fluid taken off, the machine automatically takes off an amount. And since my fluid situation is non-existent, it was dehydrated the crap out of me. Which is why is was getting progressively worse. It also meant that my electrolytes were off and hence, cramps. Today, I gave my self saline during treatment and we will see if that is the culprit.

Thanks again everyone who answered.

[drmind in reply to Bassetmommer]

Thanks for letting us know. I was thinking about you and hoping the issue got solved.

[RhenDutchess123]

Instead of pickle juice...I use a couple grains of corse pink sea salt to improve my sodium levels a bit..I also use slush ice bags to help sooth those cramps...I have noticed the longer I am on Dialysis the less frequent I have leg cramps...I think your body just has to adjust to it...

Are you allowed to sip on some water while doing Hemo Dialysis ?...If your potassium levels are good, Coconut Water is very hydrating and doesn't take much

[Bassetmommer in reply to RhenDutchess123]

It was the fluid being taken off. I gave myself 400ml during treatment and no more cramps.

[RonZone in reply to Bassetmommer]

Wish we had a "water gauge" where we could check out water levels, like the gauges on old cars.

[Bassetmommer in reply to RonZone]

Here's the thing that I did not realize. Because I was so dehydrated from dialysis, it threw off my sodium and electrolytes. Drinking just water was not going to resolve the issue. I was trying to eat pretzels too and that did not work. I needed saline and I needed before the muscles were dehydrated. Tomorrow I will do saline bolus during treatment several times and see what happens. The sad thing is when I did it on Monday, I set off an venous air alarm on the machine and that can be bad. It's always something in this Wack-a-mole game.

[RonZone in reply to Bassetmommer]

Keep on whackin!

[Petsurvivor]

all dialysis patients experience this at different times. It could be a result of removing fluid but science isn’t really sure. I’ve seen a fellow patient try mustard, which she said helps. Neither of us have diabetes but we still get cramping once in awhile. Good luck!