I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: mark j on November 19, 2005, 08:05:20 AM
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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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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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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
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I'll have to try Quinine then, it's worth a shot.
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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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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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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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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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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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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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I'll try it... what the hell, can't hurt... seems wierd tho.. lol :)
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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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I too also get this with my legs aswell......Jamie-G
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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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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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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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Tried the soap and didn't seem to do anything. Anyone else get better results? ;D Liz
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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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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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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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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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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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Haha Rerun... I tried the bar of soap... didn't work worth a damn... but my bed sure smelled nice!!! ;)
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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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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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Pets are a blessing :D
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I know my 2 dogs cheer me up some days when nothing else can...
I think we have quite a few doglovers here.. :) ;D
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I know my 2 dogs cheer me up some days when nothing else can...
I think we have quite a few doglovers here.. :) ;D
Yes, we do. We have 4 Shih Tzu and 1 Shih Tzu mix. My husband had never before bonded w/ a dog -- he and our 11 year old Shih Tzu are now inseparable. She was an anniversary gift to me, from him, but she decided from the first day that he belonged to her -- it took her a few years but she won him over! He has taught her to stay on the bed while he is in his chair watching TV, or on his computer, so that will be a way to keep her from getting in the way during dialysis. She is so jealous and possessive she watches me very closely if I even touch him, so when I start assisting him w/ dialysis it may get interesting!
Actually, my only worry is him being very upset and depressed when she dies. I suggested she be cremated when she dies and her ashes saved until they are put in his casket -- that seemed to please him. God, how he loves that dog!! His heart will be broken. :'(
BTW, we discussed RLS on our last visit w/ the Neph. He said there are three different kinds of meds he could prescribe but said that unless it was really a problem he'd rather not give any meds, because of probable side effects. Hubby said it's not that bad yet and he can handle it at the current level -- not severe nor often. Oh, the joys of kidney failure. :-[
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I used to have rls really badly and was started on clonazepam. Helped for about a month but after that did bugger all so I stopped it. I also get alot of pain in my feet, and yucky numb tingling sort of feelings. I started on gabapentin about 4 months ago and it has worked really quite good. It helps me sleep, my feet are alot less painful/tingly, and the restless legs is only very minimal, and sometimes none at all. I sleep alot better now, and so does my fiance!
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I have had RLS forever even before I was diagnosed with ESRD. My DR told me to take 400 IU vitiman E once a day.
It worked for me. Hope this helps
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I have had RLS forever even before I was diagnosed with ESRD. My DR told me to take 400 IU vitiman E once a day.
It worked for me. Hope this helps
I was told not to take vit E when you have no kidney function :(
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I have had RLS forever even before I was diagnosed with ESRD. My DR told me to take 400 IU vitamin E once a day.
It worked for me. Hope this helps
I was told not to take vit E when you have no kidney function :(
I haven't heard that but will look in to it. Also another thing that helped me was an old remedy that my Grandmother used to use was Rubbing alcohol. Just rub your legs down before bed with the alcohol . Hope this helps
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I have had RLS forever even before I was diagnosed with ESRD. My DR told me to take 400 IU vitamin E once a day.
It worked for me. Hope this helps
I was told not to take vit E when you have no kidney function :(
I haven't heard that but will look in to it. Also another thing that helped me was an old remedy that my Grandmother used to use was Rubbing alcohol. Just rub your legs down before bed with the alcohol . Hope this helps
Wouldn't that dry out your skin a lot?
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just put lotion on after you get out of the shower. It hasn't dried my skin out and I have been doing it for years.
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http://www.postgradmed.com/issues/1999/03_99/evidente.htm
This is from March of 1999 but I think it has some very good general information on RLS. It goes into a good bit of detail on causes and treatments -- I was surprised how many alternatives there are to try. I also found it interesting that 10% to 15% of the general population is affected. :o
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My doc said there are alot of options for treating RLS. I now know that the gabapentin is what has stopped my restless legs. I went without it all weekend, as I couldnt get to the pharmacy, and OH MY GOD they came back soooo bad and it felt like needles were jabbing in all over my feet. Ask your doctor about gabapentin, cant recommend it enough.
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I have researched this problem in depth for quite some time. The gabapentin has helped Denise a lot. Also uses Tylenol#3 at night.
The Restless Leg Syndrome (RLS) is one problem, but she developed a related problem where she would jerk or twitch (myoclonus), especially at night when she would try to sleep. If you are interested in the technical aspects, you will get better information if you search the technical terms than if you use layman's terms.
Google "nocturnal myoclonus secondary to ESRD" and different variations of those terms. Here is a site that you may want to print and take to your physician if you are having problems getting someone to help you. The site requires registration and is really for doctors, so some of it may be hard to understand. It isn't for you to treat yourself, but to provide information to your physician to see if it might apply to you
http://www.medscape.com/viewarticle/543705
If you want the short version, RLS in people with kidney failure seems to be related to anemia, iron deficiency and uremia. Clonazepam, neurontin (gabapentin), sinemet and narcotics are all medicines that are options for your physician to consider according to the best information available.
Remember that this isn't medical advice. This is a tool to help you discuss your care with your physician.
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I found the clonazepam wasnt all that effective and just left me feeling like a zombie the next day. The gabapentin has greatly reduced the pain, tingling, and restlessness in my legs and feet. It also helps me have a good nights sleep, without feeling too zonked out in the morning. I have found it is better to take it mid morning, so by bedtime it is well and truely kicked. I am on nocturnal Dx though, so times would change if you were on conventional, as gabapentin dialyses out which is the only thing I dont like about it.
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Haha Rerun... I tried the bar of soap... didn't work worth a damn... but my bed sure smelled nice!!! ;)
I was talking with a friend tonight (non-kidney related discussion) and she mentioned she had terrible leg cramps and got no relief, no matter what she tried. It would wake her out a dead sleep with intense pain. So she was told to put a bar of soap under the sheet, and has slept well the last 4 nights with no problem. I wonder if it will last.
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When I had RLS the doc gave my Sinemet and it's worked great.
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I've had rest leg syndrome in the past couple years, usually in the evening when I'm tired and when I've been sitting in the same position for awhile. I've also found that certain meds trigger it for me: Benadryl, Atarax (Benadryl's big brother) and Tylenol PM.
Stretching excercises and walking help get rid of it for me. When I have to take Atarax (for the Lupus rashes I get sometimes) and it triggers the rls, I take a valium in the evening. Between the Atarax and the valium, it knocks me out.
Robin
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For what it's worth, I did my own little informal experiment and found that drinking 8 ounces of Tonic Water really did seem to help with the restless legs problem. I get relief within 10 minutes. Perhaps it was the getting up and walking to the kitchen, I don't know. But, the relief came quickly thereafter.
-Devon
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Ive been having this problem. It has happened 3 times now and its scaring me now. I start feeling my legs start getting very tight. Then it spreads to my arms and the rest of my body. All of a sudden I feel like I just came back from 10 hours at the gym. Then the scary part happens. I try to get up and my legs become wobbly and brittle and I cant walk. I see that I am shaking and feeling like I am losing control of my body. I get help to start moving around and a couple of minutes later I am fine. I am either always laying down or sitting when it hits me. My last episode my feet felt like thousand of needles where going into them. Anyone have any ideas what this could be?
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Lilu, I don't think that's the same as "restless leg syndrome". You should confer with a physician about this. It could be a chemical imbalance.
RLS is more limited to the legs. What I get is a painful sort of aching in my leg muscles and the urge to move my legs even though I am lying prone. It's like I have to "walk" while I am in bed. Very uncomfortable but not anything as severe as what you describe. It doesn't go to other parts of my body, like arms and torso.
I hope you find some relief. It sounds very distressing.
-Devon
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Devon, thanks for the response. I go to the sauna and my sister things its from that. Im going to my doctor next week. Its very distressing. Very sacry.
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Did you know that anemia can cause restless leg sydrome?
I'm sure there are many reasons for RLS, but consider checking your hemo levels to rule it out.
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Hey sunny,
yeah i checked those levels and there were fine. I use to be anemic but not anymore.thanks for the advice though
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Lilu? Any news? Are you still having this problem?
-Devon
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I am going to see the doctor tomorrow. I started working yesterday and at work I got that tight shaky feeling in my legs for a little bit. I got up and started walking and it always makes it better. I was all wobbly when I walked my co worker was like please dont fall. After a few min. of walking back and fourth it was better.Thanks for asking Devon. I just wish I knew why I get this.
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Are you diabetic Lilu? Could this be peripheral neuropathy?
http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131
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Monrein thanks for the info. It feels more like a weakening feeling and cramping feeling.When I try to stand and walk I literally become wobbly and it feels like Im losing control of my motor skills. When I start moving and walking in a caouple of minutes its gone. I go to the sauma do you think that might be the cause?? oh and no burning feeling and not diabetic. I saw that potassium levels might have some similar affects. What do you think?
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Not sure at all. I'm glad you're seeing the doc tomorrow. Does your potassium generally run high? I think muscle weakness can be a symptom of high potassium but if it is that then I guess you'll have to monitor the diet bit more carefully cuz it's a serious issue and risk (as you already know, I'm sure).
Let us know what the doc says OK?
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My potassium is right now a 5.4. Its not great. I will ...hpoefully he will have some clue.