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Author Topic: restless legs  (Read 14881 times)
mark j
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« on: November 19, 2005, 08:05:20 AM »

  Does anyone else have a problem with restless legs? It seems that I've had more occurences in the last 3 weeks ( I have been out of work following a nephectomy on the 28th) and Im not as active.  Usually twice a week durimg tx, I can make it thru the 1st hour, and then I have to constantly keep my legs in motion. My NP mentioned Quinine that soome people use for relief...      how about you?
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« Reply #1 on: November 19, 2005, 11:26:11 AM »

  Does anyone else have a problem with restless legs? It seems that I've had more occurences in the last 3 weeks ( I have been out of work following a nephectomy on the 28th) and Im not as active.  Usually twice a week durimg tx, I can make it thru the 1st hour, and then I have to constantly keep my legs in motion. My NP mentioned Quinine that soome people use for relief...      how about you?

I get "Restless Legs" however I am not sure that is the correct diagnosis. The feeling I get is that my legs (the area between the foot and knee) gets very restless, it feels like it is very cold inside the bone. I have been told that I get that when I have a imbalance in my levels whether it be calcium or potassium. It make sense that is could be caused by a imbalance. I do however get the "Restless Legs" at varying times. I may go months and not feel it and then it will all of a sudden it will hit me. Some nights I have had it so bad I could not sleep.
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Rerun
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« Reply #2 on: November 20, 2005, 08:28:35 AM »

After dialysis when I go home and try and go to bed my legs need to move all the time.  I have tried the Quinine and it worked for me.  They are huge pills though and it is like trying to swallow a Tums.  I cut them in half, but then the sharp edge scratches all the way down.  Not a big deal, it is better than the leg thing.  Doesn't hurt to try it a time or two and see if it improves your situation. :P
« Last Edit: March 28, 2006, 12:20:29 AM by Rerun » Logged

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« Reply #3 on: November 22, 2005, 10:50:22 AM »

I'll have to try Quinine then, it's worth a shot.
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mark j
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« Reply #4 on: November 22, 2005, 12:43:02 PM »

thanks, Ill give it a shot.  My dr. prescribed Ambien for nites that it keeps me awake, but I nrrd something for the other times it bothers me
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« Reply #5 on: November 22, 2005, 07:48:30 PM »

After dilaysis when I go home and try and go to bed my legs need to move alll the time. I have tried the Quinine and it worked for me.

have the same problem of restless legs but 4me this also extends to numbness in the  soles of the feet and a feeling like needles are being stuck into the tops of my feet as well as leg cramp

vascular specialist found all leg arteries were fully functioning so off to the neurology specialist who says this feeling is the result of nerve damage and is all part of the renal condition however my renal specialist says that a change in dialysis treatment will over time partially aleviate my problem

so to that end i am now on a five hour session using an F10 dialysier instead of four hours and F8 and Quinnine upted from 300mg to 600mg once a day

maybe this will help others
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susie q
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« Reply #6 on: November 25, 2005, 11:11:23 AM »

I think I have restless legs too, but I also get the same sensation in my arms , i hate it.. It seems like it only bothers me when I am tired.  I don't take anything... pills  ick..  :(
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« Reply #7 on: November 28, 2005, 11:58:07 PM »

I know this might sound queer, but I read somewhere on the Internet that there is something that works for restless legs.  You put a bar of soap under the sheet.  But it should not be a moisturising bar like Dove or Olay.  I don't know how or why, but they say that this works.
I just did a search for [soap, restless legs] and quite a bit of information and websites came up.  Check it out.
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« Reply #8 on: November 29, 2005, 01:59:22 AM »

I did a search like you said and they seem to think it works with the bar of soap. I have just put one under my sheet for tonight and see how it goes. I will give it a week and let you know what happens. Maybe we should all try it and compare our results. I will try anything to get off my sedatives that I need to take to sleep. Sick and tired of waking up dopey and feeling like I haven't had enough sleep. Suzie Q, give it a go too. ;D Liz
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mark j
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« Reply #9 on: November 29, 2005, 07:47:17 AM »

  I've had the soap under my sheets for a couple of years now, since my wife heard about it, and it seemed to help with lessening of leg cramps (of course this was before I started dialysis and started getting leg cramps from too much weight comming off).  Havent noticed any relief from the restless legs though.
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susie q
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« Reply #10 on: November 29, 2005, 09:38:16 AM »

I'll try it... what the hell, can't hurt... seems wierd tho.. lol :)
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« Reply #11 on: November 29, 2005, 09:58:55 AM »

i get leg cramps so bad at night it is almost unbearable...feels like my bones are going to pop right thru my skin...guess i will try it too
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Jamie
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« Reply #12 on: November 30, 2005, 08:02:43 PM »

I too also get this with my legs aswell......Jamie-G
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mark j
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« Reply #13 on: December 11, 2005, 10:40:34 AM »

  Im still having problem with the rls... the Quinine (100mg) had no effect so now the dr prscibed nuerotin(sp) i've got the generic gabapentin(100mg) take one at bedtime....after 4 days still no relief so I called the dr...he says to give it a week and see.....Its driving me ( and my wife ) crazy!
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« Reply #14 on: December 11, 2005, 03:06:43 PM »

  Im still having problem with the rls... the Quinine (100mg) had no effect so now the dr prscibed nuerotin(sp) i've got the generic gabapentin(100mg) take one at bedtime....after 4 days still no relief so I called the dr...he says to give it a week and see.....Its driving me ( and my wife ) crazy!

Like I mentioned in my previous post it's an imbalance in your blood levels and it is part of being on dialysis. I don't think any pills are going to help you.
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« Reply #15 on: December 11, 2005, 03:27:36 PM »

I don't think restless leg is just happening to dialysis patients-- I am seeing commercials for a medication for it, and the commercials are aimed at 'healthy' people.  So it can't be solely related to dialysis.

I used to get restless leg when I smoked pot-- that was ten years before I went on dialysis.  If it's a chemical imbalance, I probably had it even when I was otherwise healthy.

I tried Sinemet, but it ended up making things worse-- my legs were jumping around even during the day, making me look like I was having seizures. That sure put a damper on my social life-- people were afraid to invite me anywhere!  I got off the Sinemet and that stopped.

I still occasionally have restless leg, but it's usually when I'm totally exhausted and haven't gotten much sleep.  It creates a vicious circle, because it gets worse when I'm exhausted-- but then the restless legs will prevent me from getting any sleep!  To stop that cycle, I usually take over-the-counter diphenhydramine (Benadryl) for two or three nights in a row, so I can get more than four hours' sleep a night.  So far, that's worked for me.
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« Reply #16 on: December 15, 2005, 03:12:52 AM »

Tried the soap and didn't seem to do anything. Anyone else get better results? ;D Liz
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Jamie
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« Reply #17 on: December 16, 2005, 05:33:06 PM »

Dear fellow renal readers,

Today (friday) treatment my leg were all over the place. I find this only happens in those dialysis chair's. Its kind of weird but as I think about it, it only happens there during the treatment.
  I have also noticed it only happens after about one hour in to the treatment right to the very end.......Jamie-G
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« Reply #18 on: December 20, 2005, 12:33:43 AM »

I just made this thread, here is a link to some information about a new drug. Check it out.

http://ihatedialysis.com/forum/index.php?topic=232.0

It might help people who suffer with chronic RLS. Please let us know if you try the drug and if it works.
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« Reply #19 on: February 19, 2006, 07:46:51 PM »

I had cramps & restless legs on P.D. NOw the cramps are no longer a prob., but
the restless feet certainly are!!!! - I heard a nurse telling a patient it was due to
the body moving proteins about when it gets out of balance.
Anyway, just before I went on haemo I asked the same nurse about the drug she
mentioned to the patient...& now I' m on it. As my wife said, I was getting more
exercise while asleep than awake!!! ;D
...and the drug is chlonazapam - Brand name "Paxam" - & is normally only prescribed
for epileptics, so is not covered here by govt. subsidy, so I have to pay full whack,
but it's worth it!!!! ;)
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« Reply #20 on: February 24, 2006, 05:06:31 AM »

i have had restless leg syndrome for  years. mine comes when my pain pill is wearing off but i dont feel the pain yet. its wierd. but i have been on oxycontin for five years and dependant on it. its funny  how your body knows you are hurting even if the pills cover it.
also get it wh en i am nervous or anxiety.  someone once told me that in body language it means i  dont want to be doing what i am doing or be where i am.
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« Reply #21 on: March 28, 2006, 12:31:45 AM »

I've been experience RLS this week.  >:(  I almost get to sleep and I get restless and have to move or turn or sit up or get up!  LIKE NOW  :P   I thought I'd read this thread again to see what others are doing.  I'm going to ask my Neph about some of the drugs mentioned.  "Paxam" I think I've heard of that.

Did the bar of soap work for anyone?
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susie q
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« Reply #22 on: March 28, 2006, 04:47:58 AM »

Haha Rerun... I tried the bar of soap... didn't work worth a damn... but my bed sure smelled nice!!!   ;)
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Rerun
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« Reply #23 on: March 28, 2006, 05:13:46 AM »

My two Min-Pins would proably eat the soap.  Remember they ate all those cookies?  Well, I put an empty box with some Styrofoam in it down on the floor while I was looking at an ice crusher I bought.  Then I left for a few minutes.  They destroyed the Styrofoam!  It looked like a bomb went off in my kitchen!  Little Shits!    >:D

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Epoman
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« Reply #24 on: March 28, 2006, 10:41:07 PM »

My two Min-Pins would proably eat the soap.  Remember they ate all those cookies?  Well, I put an empty box with some Styrofoam in it down on the floor while I was looking at an ice crusher I bought.  Then I left for a few minutes.  They destroyed the Styrofoam!  It looked like a bomb went off in my kitchen!  Little Shits!    >:D



 ;D
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