I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: Des on July 26, 2010, 11:41:20 PM
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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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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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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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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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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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Re: what really helps for "restless" legs?
Amputation. Sometimes I feel like there is no other solution. >:(
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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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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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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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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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Glad to hear he found some kind of relief!
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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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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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I take [1] Flexerial 1X per NON D Days, and [2] on D Days.
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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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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.
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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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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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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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Requip (Ropinirole) (http://en.wikipedia.org/wiki/Ropinirole) and Mirape (Pramipexole) (http://en.wikipedia.org/wiki/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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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.