I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Everlasting on September 28, 2009, 02:29:26 PM

Title: restless leg syndrome and chronic kidney failure
Post by: Everlasting on September 28, 2009, 02:29:26 PM
    Just acquired an interesting fact:  It is not unusual for restless leg syndrome to accompany chronic kidney failure
    Does this hold true with your own experience?
Everlasting
Title: Re: restless leg syndrome and chronic kidney failure
Post by: Jean on September 28, 2009, 02:34:38 PM
Unfortunately Everlasting, for a lot of us, it's true. I am not even on Dialysis yet, but have terrible jumping of the legs, sometimes the arms too. I am prescribed Robaxin and it helps a lot, except of course, like many meds, makes you drowsy.
Title: Re: restless leg syndrome and chronic kidney failure
Post by: peleroja on September 28, 2009, 03:22:39 PM
Yup, I got the RLS, some nights worse than others.  I've even noticed it occasionally invading my daytime!
Title: Re: restless leg syndrome and chronic kidney failure
Post by: iketchum on September 28, 2009, 04:19:44 PM
I developed RLS after starting dialysis. I was perscribed gabapentin and have no problem with it now.
Title: Re: restless leg syndrome and chronic kidney failure
Post by: Restorer on September 28, 2009, 04:28:23 PM
I've had it on and off for a while. When I had emergency dialysis, it got so bad that I didn't just have restless legs - I had restless arms, and restless body, and restless head! I just had to move. I ended up lying in the ICU punching at the air all night.
Title: Re: restless leg syndrome and chronic kidney failure
Post by: del on September 28, 2009, 04:42:19 PM
I have seen my husband have restless everything!!  LOL!!!  Arms, trunk, legs.  It was to the point that it was awful to sleep with him. He would be all over the bed. There were nights when I woke because he was kicking me in the head.  He would lie sometimes so that his head was at the foot of the bed so of course when he legs jumped in his sleep he would kick me in the head!!!  We were at a friend's house once when it happened and he offered me his skidoo helmet when it was time for bed!! At least we were able to joke about it.It came down to either a king sized bed or twin beds!!!  Since starting nocturnal hemo he doesn't suffer from the restless syndrome at all.  Most nights he doesn't even move.
Title: Re: restless leg syndrome and chronic kidney failure
Post by: KICKSTART on September 29, 2009, 03:24:17 AM
Yes im another one with Restless everything !
Title: Re: restless leg syndrome and chronic kidney failure
Post by: Everlasting on September 30, 2009, 12:46:04 PM
Thank you all for your response to the issue of restless legs syndrome.  This news will be of great relief to Victor.  .... and yes his upper body and one arms are often included.
Everlasting
Title: Re: restless leg syndrome and chronic kidney failure
Post by: Loretta on September 30, 2009, 04:24:06 PM
I also have restless Everything.  It can make dialysis extremely miserable!
Title: Re: restless leg syndrome and chronic kidney failure
Post by: billybags on October 01, 2009, 10:45:50 AM
Mentioned the RLS to neph again and we now have a prescription called Mirapexin. The first thing the bit of paper inside said"Do not take if you have kidney problems" about right . has any one been prescribed these and did you have any side effects. Hoping for a good nights sleep.
Title: Re: restless leg syndrome and chronic kidney failure
Post by: willowtreewren on October 01, 2009, 11:22:56 AM
On my husband's "off" days from dialysis, his RLS sometimes sent me to the guest room!

It has gotten better though.

Aleta
Title: Re: restless leg syndrome and chronic kidney failure
Post by: del on October 01, 2009, 04:47:15 PM
I think restless leg syndrome is just as bad for the partner as well as the one with the restless legs!!  It is not nice being hit in the side of the head with a hand in the middle of the night or kicked in the head or in the back!!  It's very frustrating!!  Hubby would often sleep through the restlessness so he knew nothing about hitting me (at least he said he didn't ) LOL!!
Title: Re: restless leg syndrome and chronic kidney failure
Post by: Poppylicious on October 03, 2009, 10:35:59 AM
Ah, that's a relief.  Blokey has been grumbling about restless legs for a few weeks now, so he'll be pleased to know that it's 'normal'.  ;D
Title: Re: restless leg syndrome and chronic kidney failure
Post by: Bub on October 03, 2009, 09:32:56 PM
Oh yes, immediately after starting hemo.  I was recently prescribed neurotin for neuropoyhy in my feet and it has also given me relief from the RLS.  Also eased the horrible itching I was suffering from. Pardon my spelling --- neither I nor the spell checker can handle these medical terms.
Title: Re: restless leg syndrome and chronic kidney failure
Post by: KICKSTART on October 04, 2009, 03:26:58 AM
Bub , its more likely the horrible itching is high phosphorus , have you checked your levels ?
Title: Re: restless leg syndrome and chronic kidney failure
Post by: Ken Shelmerdine on October 04, 2009, 07:15:34 AM
Restless Legs to start with then restless everything. It comes and goes. Right now I'm free of it (can't believe I just typed that cause' last time I did so it came back for about four weeks). The worse part is trying to get to sleep. I start off perfectly comfortable then after about ten minutes it starts. Eventually I'm tossing and turning and each new position seems comfortable for about 10 seconds before I'm off again seeking a new position. After a while I have to go and sleep in the guest bedroom.

It also seems to be associated with feeling too hot especially in my legs because when I get into a nice cool bed in the guest bedroom it stops quite quickly and I finally get off to sleep.

It seems that there are two aspects to RLS. Conscious discomfort as described above and the involuntary twitching and flaying of limbs when asleep. I wonder how many of us on this forum have just 1 or both. I have both. >:(
Title: Re: restless leg syndrome and chronic kidney failure
Post by: Bub on October 07, 2009, 04:32:29 PM
Yes siree, my phosphorus is extremely high because I never remember to take my binders.  I eat one meal a day, in the evening and tend to "graze" the rest of the day so done take my phoslo.  Do any of you more experienced people have any suggestions?
Title: Re: restless leg syndrome and chronic kidney failure
Post by: lizabee on October 07, 2009, 05:08:40 PM
I never had RLS in my life until I started dialysis.  There are nights that I have to get out of bed and walk around...for hours...and then there are nights that it doesn't bother me at all.  Oddly, it never bothers me while I'm at dialysis...only at night.
Title: Re: restless leg syndrome and chronic kidney failure
Post by: hurlock1 on October 08, 2009, 09:44:49 AM
    Just acquired an interesting fact:  It is not unusual for restless leg syndrome to accompany chronic kidney failure
    Does this hold true with your own experience?
Everlasting
I have a previously broken leg, messed up knee, hip, and ankle, thus making it impossible to make my leg comfortable no matter what position I put my right leg into. After about an hour, I have to move my leg from one position or another. After about 3 hours I have to pee and then my right leg movements increase. I wouldn't call it "restless leg syndrome". I'm not sure what restless leg syndrome is. In my case I move my leg because it hurts. It seems that maybe some sort of pain killer would do the trick, but I am a known recovering addict and can't take pain killers because I might start taking them all of the time. It occurs to me that "restless leg syndrome" happens at night, during sleep. Is it, "I can't help it Honey, my legs are just moving around uncontrollably." or is it, Honey, I didn't get a wink of sleep last night because your legs were wiggling around all night!"
i think that "restless leg syndrome" is just something that pharmaceutical companies have come up with a catch-all medicine to "cure" the symptoms of several real problems.
I would like to know if anyone has "restless leg syndrome", and if anyone has found  relief from it by taking a pill.
Title: Re: restless leg syndrome and chronic kidney failure
Post by: paris on October 08, 2009, 11:41:19 AM
It is different than leg or joint pain, at least for me.  I call it the "heeby jeebys".  You just have to move your legs to get some relief.  Walking around, shaking my legs - anything to make if feel better.  You can't sleep or get comfortable.  It can be miserable.  I also have problems at any time of the day, not just night time.   Once you have felt it, you know it is a real medical issue and not made up. 
Title: Re: restless leg syndrome and chronic kidney failure
Post by: looneytunes on October 08, 2009, 01:53:07 PM
My husband developed "Restless Everything" after he changed from Hemo to PD.  We have nights that his entire body jerks off the bed and I have to move or risk being hit by flying appendages!   ;D  So I move.  His neph asked me to track this as related to his daily physical activity.  So far, there does not seem to be any pattern.  No meds have been prescribed at this point.