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Author Topic: what really helps for "restless" legs?  (Read 15770 times)
Des
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« on: July 26, 2010, 11:41:20 PM »

The poor guy next to me at the unit evenutally stood up next to his machine and did a rocking motion from foot to foot to try to help with his legs. He says it feels like there are creepy crawlies inside his legs. This is worse at night and he battles to sleep as well.

What helps?
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Jean
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« Reply #1 on: July 26, 2010, 11:48:42 PM »

I take one muscle relaxer every night. He has RLS, restless leg syndrome. Well, at least that is what it sounds like. His Dr. could give him something. Rerun swears by some quinine water.
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One day at a time, thats all I can do.
billybags
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« Reply #2 on: July 27, 2010, 05:42:20 AM »

Husband takes 100ml Gabapentin. He only takes these when his legs are really bad, mostly at night. They can make you a little dopey next day. He has tried lots of things but these do work for him.
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Henry P Snicklesnorter
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« Reply #3 on: July 27, 2010, 07:22:27 AM »

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KICKSTART
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In da House.

« Reply #4 on: July 27, 2010, 03:31:43 PM »

I take co-beneldopa and have done for ages , 99.9% of the time it works , but when it does happen i find that keeping my legs really cold works ..others will say heat works for them , its all trial and error !
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Des
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« Reply #5 on: July 27, 2010, 10:50:02 PM »

Thanks, I wrote all the advise down and I will give it to him tonight.......

You are my wikipedia  :rofl; :rofl;
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Sluff
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« Reply #6 on: July 28, 2010, 08:02:34 AM »

Re: what really helps for "restless" legs? 



Amputation.     Sometimes I feel like there is no other solution.  >:(
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murf
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« Reply #7 on: July 29, 2010, 04:48:41 PM »

I know this sounds silly but whenever I get Restless legs I put on a pair of socks. If I am wearing socks at the time pf dysfunction, I take them off for a half hour, then put on a clean pair. It is probably just a placebo but it seems to work for me.
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Started Hemodialysis Anzac Day 2005
Patiently waiting for a transplant
Started PD New Year 2010
Taken off transpalnt list, Jan 211
texasstyle
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« Reply #8 on: July 29, 2010, 07:34:05 PM »

I suffered a horrible bout with RLS as a side effect from Interferon and it was not fun. Painful in fact. It is a neurological disorder and be assoc. with chronuc kidney disease.I wanted out of my own skin so bad. Yes the tonic water. It's not a cure all but did help enough to where I could sit reasonably still and took the edge off the pain. Quinine in the tonic is an anlagesic. Helps numb the pain. It is temporary and for me short lasting but after all, it was only tonic water. There are medications for this disorder. I believe Requip may be one of them but not sure if it's kidney friendly. I'm sure there are others. When I would feel it coming on I would drink a glass of tonic. For me I knew I would not suffer with RLS very long as it was a result of my medication which was temporary. Usually RLS occurs worst in the evening and often keeps you up all night long. I hope your friend can get some relief soon. It's a rough thing to go through.
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caregiver to husband using in-center dialysis 4 years
jennyc
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« Reply #9 on: July 29, 2010, 11:25:11 PM »

I was on clonazepam at night when pd was failing and nothing else worked cause my stats where so high and out of control.
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2003 January - acute renal failure
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Cadaveric Transplant 27/1/2010
Des
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« Reply #10 on: August 12, 2010, 06:22:54 AM »

Thanks from him to you all.

TONIC water worked for him!!!!

He is so happy and he has been sleeping. Not sure if it is a placebo or not but it works for him thats all thats important.
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
texasstyle
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« Reply #11 on: August 16, 2010, 04:32:27 PM »

Glad to hear he found some kind of relief!
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caregiver to husband using in-center dialysis 4 years
nkviking75
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« Reply #12 on: October 15, 2010, 07:28:22 PM »

As far as restlessness during treatment goes, I deal with it with a set of bicycle pedals.  A staffer will check my blood pressure, and if it's OK, they'll let me put my legs down and set the pedals in front of me.  I pedal for as long as 2 hours.  (I run for 5.)  It helps me salvage a bit of my sanity, and I get some light exercise.  Besides, it's hard to recline for 5 hours straight.  I don't know if that would work for everyone, but if you can get by with it, it's a cheap solution to the problem.  I paid about $35 for the pedals several years ago.
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DinSD
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« Reply #13 on: October 25, 2010, 05:02:32 AM »

Oh man, i know exactly what your talking about.  I get RLS real bad sometimes that i would have to cut my time by a 1.5 hours a couple times. I tried all the nerve meds and none of them worked.  I finally got Clonazepam and that helped, but what helped me the most for during treatment was getting a shot of Benadryl during my treatment.  My dialysis nurse gave it to me one day, just like they give Epo into the machine, during treatment to help calm me down or something and it made the RLS better and i was able to finish my treatment from then on.
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-MR. F
Hazmat35
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« Reply #14 on: October 25, 2010, 05:23:36 AM »

I take [1] Flexerial 1X per NON D Days, and [2] on D Days. 
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Brother Passed away - 1990 - Liver Disease
Diagnosed w/ Polycystic Kidney Disease - 1998
Mother passed away - Feb. 1999 - PKD
Sister passed away - Feb. 2006 - PKD
AV Fistula / Upper Left Arm - September 2009
Father passed away - September 2009
In-Center Hemo Dialysis - April 2010
Broken Knee Cap - January 2015
Diagnosed w/ A-Fib October 2017
Surgery to repair Hiatal Hernia 2018
Multiple Fistula Grams / Angioplasty's since then!


Hating Dialysis since Day 1 and everyday since then!!!!  :)
jelost
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« Reply #15 on: November 14, 2010, 12:49:37 AM »

I am soo glad I am not the only one with this. I never knew anyone with RLS and when I first said something about my legs bothering me the nurse had no idea what I was talking about. My doctor has me on clonazepam and Sinemet. I works but sometimes not all night.
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Henry P Snicklesnorter
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« Reply #16 on: November 14, 2010, 06:32:19 AM »

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cath-hater
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« Reply #17 on: May 20, 2011, 11:43:21 AM »

Restless legs can be taken care of by doing some walking/running during the day. Try to stay away from the drugs and do it naturally.  I don't know the biological reason of what causes RLS, but insufficient dialysis is what usually brings it on. 
« Last Edit: May 20, 2011, 02:24:50 PM by cath-hater » Logged

Currently on PD using Fresenius.
PD for 9 years.
1 failed transplant in 2010 due to FSGS - donor kidney still inside and still producing urine (weird), but spilling alot of protein.
Off all immunosuppressants.
Currently not active on any list (by choice).
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« Reply #18 on: May 20, 2011, 12:26:05 PM »

A low dose of Mirapex (Pramipexole) helped me. Interestingly, over the last 6 months when my kidneys finally started to fail and my creatinine level went from the 4s to 11+ the RLS symptoms seem to have lessened. Can't say if there is any correlation, but I've had mild RLS for years.
 
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cattlekid
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« Reply #19 on: May 20, 2011, 12:34:05 PM »

I just started on Requip.  The smallest dosage - .5 mg has worked wonders for me.  I have not had the fatigue side effect, I usually take it about 1-2 hours before bedtime as directed and it definitely helps with the end of day RLS that I get.  My primary care doctor and neph both state that it is okay for me to take even with the ESRD.
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noahvale
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« Reply #20 on: May 20, 2011, 10:31:37 PM »

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natnnnat
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« Reply #21 on: June 10, 2011, 10:14:50 PM »

Inadequate dialysis, low iron levels, and anemia are all associated with restless leg syndrome in dialysis patients. 
Oh that's good to know.  Gregory gets restless leg sometimes, that's why he walks every night.  I always thought it must be because his "normal" creatnine is about 250.  But he had to have aranesp shots for awhile to raise his haemoglobin... maybe it was more about iron than kidney function.  I know you will tell me they are all related.  He was told recently that he could stop with the aranesp shots, and I dont think he's had RLS so much lately.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
greg10
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« Reply #22 on: June 11, 2011, 05:41:31 AM »

Requip (Ropinirole) and Mirape (Pramipexole) are both acting as agonists for the D2, D3, and D4 dopamine receptors, pramipexole may directly stimulate the underfunctioning dopamine receptors in the striatum, thereby restoring the dopamine signals needed for proper functioning of the basal ganglia.

It is common for ESRD patients to have protein malnutrition.  Levels of dopamine and norepinephrine are increased by the consumption of protein-rich foods and diet high in protein may also help with  RLS (Restless Leg Syndrome).  There are many natural dopamine agonist present in our diet, for example omega-3 fatty acids in fish.  French scientists have shown that rats deficient in omega-3 fatty acids had more receptors for the neurotransmitter serotonin and a corresponding decrease in dopamine in the frontal cortex.

http://www.rlcure.com/naturaldopamine.html

I just started on Requip.  The smallest dosage - .5 mg has worked wonders for me.  I have not had the fatigue side effect, I usually take it about 1-2 hours before bedtime as directed and it definitely helps with the end of day RLS that I get.  My primary care doctor and neph both state that it is okay for me to take even with the ESRD.
A low dose of Mirapex (Pramipexole) helped me. Interestingly, over the last 6 months when my kidneys finally started to fail and my creatinine level went from the 4s to 11+ the RLS symptoms seem to have lessened. Can't say if there is any correlation, but I've had mild RLS for years.
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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
Seamus
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« Reply #23 on: June 16, 2011, 01:39:14 PM »

I started Gabapentin several years ago for peripheral neuropathy and and RLS.  It helped dramatically.  I have since had a femoral bypass to aid the PN and that was cured but the RLS continued to haunt me.  I still use the Gabapentin, but the last time I got it refilled there was a warning about use by Kidney patients.  The Neph at the dialysis center was not concerned about the warning, except "use in moderation".  Not  a big help.
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Seamus
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