Restless Legs started with short daily - any suggestions?

Discussions for Patients, Family, and Friends HD For Patients
1

When I was in-center, I never once had Restless Legs. In fact, I had never even heard of the term.

I have read several accounts from posters on this board about how switching to daily hemo actually relieved their RLS they had when they were in-center. But, oddly, ever since I switched to short dialy, I have developed RLS and it seems to be getting worse. I’ve tried the new drug that recently came out (unfortunately I can’t remember the name), tried other solutions found on the web (stretching, some exercising before bed, different sleeping pills, massaging) but NOTHING seems to work and I am getting extremely frustrated.

I can’t remember the last time I had a normal night’s rest. Either I can’t go to sleep at all so I wind up staying up far longer than I prefer. Or, I fall asleep just fine only to wake up a few hours later - then having to just stay up for the rest of the night because of my RLS (like tonight).

I know that RLS is a complaint that many dialysis patients have. I just really surprised me that I started getting it after I switched to short daily.

Does anyone have suggestions on how to treat my RLS? Hopefully some things that have actually worked for them? Things I might not have tried?

I’ve searched the web and found several products that claim to be “the miracle cure for RLS”, but any product advertisement promising to be “the miracle cure” for anything always make me wary.

I am really hoping that all the extremely helpful and informative people on this board will be able to help me out. I really, really want to go to bed at a normal time and wake up late the next morning if I want to.

Just like the old days!

2

Eston, I really hate to say this, but you may not be getting enough dialysis for your body, and this may be what’s triggering your RLS. It’s not a good thing to have this–there is one study that suggests that people on dialysis who have RLS tend not to do as well:

Am J Kidney Dis. 2004 May;43(5):900-9.

Restless legs symptoms among incident dialysis patients: association with lower quality of life and shorter survival.

Unruh ML, Levey AS, D’Ambrosio C, Fink NE, Powe NR, Meyer KB; Choices for Healthy Outcomes in Caring for End-Stage Renal Disease (CHOICE) Study.

Renal-Electrolyte Division, University of Pittsburgh Medical Center, Pittsburgh, PA 15261, USA. unruh@pitt.edu

BACKGROUND: Symptoms of restless legs are common among patients treated with long-term hemodialysis. We investigated the relation between symptoms of restless legs, quality of life, and survival among incident hemodialysis and peritoneal dialysis patients. METHODS: This report includes 894 dialysis patients who responded to an item regarding severity of restless legs symptoms in the Choices for Healthy Outcomes in Caring for End-Stage Renal Disease Study. We examined participant responses both as categorized by the 5-point symptoms of restless legs item and classified with severe symptoms of restless legs if they reported they were very or extremely bothered by symptoms. Independent predictors of restless legs symptoms were estimated using logistic regression. The association of restless legs symptoms with quality of life was examined by means of mixed-model regression, and adjusted mortality risk was estimated by means of Cox proportional hazards. RESULTS: Fifteen percent of dialysis patients were classified as having severe restless legs. Those characterized by severe restless legs were significantly more likely to be administered benzodiazepines, antidepressants, and antiepileptics. Age and diabetes mellitus were independently associated with severe symptoms of restless legs. Symptoms of restless legs were associated with lower Physical and Mental Component Scores, vitality, bodily pain, and sleep quality (all P < 0.001). After adjustment, severe symptoms of restless legs were significantly associated with an increased mortality hazard ratio of 1.39 (95% confidence interval, 1.08 to 1.79). CONCLUSION: Symptoms of restless legs were associated with lower quality of life and increased risk for death. The effect of treatment for symptoms of restless legs on quality of life and survival awaits additional study.

It seems very odd that getting more treatment (going from 3 days a week to 5 or 6) would cause this, but you need to figure it out and get it treated or change your dialysis routine so it goes away.

3

Hi Eston!
I had read about all the many possible remedys for RLS in the kidney groups. Being a person who prefers a natural approach, when at all possible, I found it very bewildering. It has been a long time since I solved this problem, but if I remember correctly, I mainly got the RLS while on the machine and less at home. The solution that solved the -problem for me was rinsing the dialyzer with an extra bag of saline. This totally took care of it and I never had RLS again. What a relief it was, because I know how unnerving it can be. As with many other things on this journey, I got the correct answer from other educated patients and professionals via the net, not from my neph or staff at the time. Hope you get relief soon.

4

On and off I’ve gotten that problem of RLS but only when consuming junk food like softdrinks, or when have high pottasium…was more common in-center…

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Hi y’all,
Jane wrote:

The solution that solved the -problem for me was rinsing the dialyzer with an extra bag of saline. This totally took care of it and I never had RLS again.

Since the Aksys PHD already rinses the dialyzer with saline–and uses heat to disinfect, so a protein coating builds up in the dialyzer, making it even more biocompatible–this probably wouldn’t be the solution for Eston. Makes sense to try it in-center, though…

6

I had RLS extremely bad when I was on PD. I was quite under-dialysed too. It didnt change much when I went onto hemo either.
Since starting nocturnal, and starting on a new drug, it is almost non existant. I sometimes shake a little bit when Im getting to sleep, but its not enough to bother me. I dont know if its the extra dialysis or the drug thats helped get rid of it, but something has!
The drug Im on is called gabapentin, its actually for the nerve pain I get in my feet, but it just so happens to help me get a decent sleep as well. It also helps with the horrible crawly feeling I get in my feet, mainly when Im in bed. I definitely reccomend it.

7

Amba,
You mention nerve pain in your feet…what causes that? How long have you been on dialysis now? Why do you say you were underdialyzed with pd?

8

I don’t know why you have RLS now and you didn’t before daily hemo. It should improve on daily, not get worse - unless you’re not getting enough dialysis somehow. However, if you do have it, I wouldn’t bet the farm that it will disappear with daily. Mine didn’t. It’s better, but not totally gone. I get it in two forms. One is when I just can’t stop moving my legs, and occasionally, I suddenly jerk my legs or whole body while sleeping.
Pierre

9

Amba
My hubby has been on Gabapentin for about 8 years after suffering nerve damage from a ruptured disc in his back. He has intense pain in his legs without it. Unfortunately it is not covered by our PBS system for that, being mainly prescribed for epileptics, so we are up for around $100 a month. Hope it is covered for kidney patients :shock: and I hope I don’t end up needing it (so far so good)… 2 of us on it in the one family would be too much. I couldn’t bear to go through the pain he has experienced on top of everything else. Glad to hear it is working for you, it really is a marvellous drug. made hime very sleepy at first and he gets quite dizzy if he forgets a dose.

10

I have been fighting rls for over four years now. I am Pd patient and getting enough dialysis is not the problem my numbers are great. I have tried most everything starting with clonazapan which worked for some time then I read a study that low iron levels were the problem and I called the Doctor doing the study and his claim was that your iron level needed to be higher than recommended levels with my nephs guidance we tried that and it did work however my levels were to high to continue this. Back to clonazapan when that stopped working I tried all of the Parkinson’s drugs of which the new one requip is they did work for a bit but made me sick. Onto something new also thru reading found out that some success was found with vicodin so I started on that have been using it for about a year and it works great. Some of the problems are of course the type of drug it is and second that over time you have to take more you know one becomes two and so on. Right now my problems always starts about 6 or 7 at night so I take one at 5 and then another at 7 and hope that does it some nights it’s more but for the most part it’s gone. I don’t know if vicodin is a drug that is diaylsized out so you would need to check that. I wish you the best of luck this is not a fun thing sometimes I think it’s the worst problem I have wish there was more being done for this…….

11

Thanks everyone for sharing your information with your experience with RLS. I have a few comments.

Dori - I am pretty sure that I am getting enough dilaysis. My labs came back from last week, and my Kt/V was in the .60’s. My clinic’s acceptable range for a good Kt/V for short daily is .45 - .55. So I am above their normal range.

And you are right - going from 3 tx/week to 5 tx/week does give me more time on the diaysis machine.

Believe me, I definitely want to solve this problem. Thanks for the study info.

Jane - Dori is correct in that the Aksys PHD which I dialyze on rinses the blood tubing and dialyzer many, many times with extremely hot water during it’s recycling process it does between each tx. Manually rinsing the lines wouldn’t provide a solution to my problem.

Amba - I have never heard of “gabapentin”. I will talk to my neurologist about it. I have tried “Requip” to no success, though. Maybe the one you mentioned will do the trick for me.

Pierre - I know that people have many different problems with RLS. What happens with me is that when I lay down to go to sleep, most of my muscles feel like they have tons of energy that needs to be worked off. It’s almost like there is an electric current running through my entire body. It’s a really strange feeling for me. I’ve tried stretching before bed, exercising before bed, and even massaging my muscles. Nothing seems to help.

Steve - I’ve tried “Requip” as well. It didn’t have any real noticeable effect, positive or negative. Plus, it did make me a bit sick, like you mentioned it did with you. “Clonazepam” is out of the picture for my RLS, because I already take a pretty high dose of it to help control a seizure disorder I have had for several years now. I don’t know what I think about taking “Vicodin” on a daily basis like you do. For one thing, my body has an extremely high tolerance for any narcotic because of the number of times I have been hospitalized and was placed on narcotics for the severe pain I was in. I have taken “Vicodin” before, but I didn’t feel any kind of relief as a result of having taken it.

Thanks again, everyone, for helping me try and solve my newly developed RLS problem. Hopefully, I will find something that works for me.

Has anyone tried any of the herbal products that are supposedly the “miracle cure” for RLS? When I was first looking for solutions on the web, I came across several herbal products that claimed to be the cure. I am hesitant to try any of these, because I feel like I would be wasting my money.

Has anyone had any success with herbal products helping to relieve their RLS?

12

The only other thing I can think of is to consult with your neph about dialyzing longer. I know that in my program, the nurses rave about daily nocturnal in terms of how it improves the symptoms of RLS. Of course, this is only if these are being caused by renal failure. There doesn’t seem to be any substitute for time on the machine. In my own experience, exercise (even a simple walk) before dialysis does NOT help - in fact, it makes it worse. Good luck. I know how bad that can be.
Pierre

13

There really is no one treatment for restless legs. There are many things you can try, but it can take time to figure out what works for you. Since I have started on gabapentin, and nocturnal dialysis, my RLS has reduced dramatically. Im not sure if its one or the other that has helped, but I do know if I forget to take the gaba, my legs and feet are awful at night.
Gabapentin is a drug for epilepsy, but it can also be used for neurological pain, which is what I use it for.

14

Pierre:

The only other thing I can think of is to consult with your neph about dialyzing longer. I know that in my program, the nurses rave about daily nocturnal in terms of how it improves the symptoms of RLS. Of course, this is only if these are being caused by renal failure. There doesn’t seem to be any substitute for time on the machine. In my own experience, exercise (even a simple walk) before dialysis does NOT help - in fact, it makes it worse. Good luck. I know how bad that can be

Pierre,
Are you saying that when you do nocturnal txs you do not have RLS or have less?

15

Absolutely, definitely that’s what I’m saying :slight_smile:

I virtually never get the kind of RLS where I have to keep moving my legs anymore. The nurses said nocturnal would improve or eliminate that, and it pretty much did. I still do occasionally wake up with a jerk, but that’s very rare now. In fact, usually it happens when I’m not even on dialysis.

Pierre

16

In my case, the RLS was most definitely cured by putting a 2nd bag of saline through the dilayzer at put on. I had read about this at the dislysis_support group, how putting 2, or 3, if necessary, bags of saline through the dialyzer prior to tx would remove the contaminants. The very first time I did this, it was like magic. Prior, my legs would jerk around during tx and the unnatural pressure in my legs would drive me nuts. The very first time I put a 2nd bag through, the problem vanished from then on.

In this first unit, I don’t think they even put a full bag through as standard practice. In my current unit, they would not let me use 2 bags, but they did put one full bag through. I did not have the RLS, but did have problems with inflammation. One day a tech told me they had new procedures and if I wanted more saline at put on I could have it. So, it was back to 2 bags. Again, from the very first tx., I felt better. I would describe it as a cleaner, far less inflammed tx.

I do not know why I had RLS with the first unit, but had inflammation only with the current unit. But inflammation is very troublesome, too, and it is evident, in my case, that the problems are as a result of contaminants in the tx.

17

Im just wondering how would putting a second bag of saline through the dialyser would help RLS? What contaminants is it removing?

18

I wanted to let everyone know that, thanks to amba_79, I think that my RLS has finally been relieved. I got a prescription for Gabapentin yesterday from my neurologist. I took some last night and I slept like a baby for the first time in several months!

I couldn’t beleive it when I woke up and it was already 9:30! Wow. My only concern is knowing whether or not this was just a fluke, or if it is going to be a permanent solution.

I hope it is permanent. But if it isn’t, before is stops helping to relieve my RLS, I am going to get as much rest at night as I can.

19

Wow Eston that’s great to hear. Sharing informatin with people from all over the world … I am beginning to think this Internet thing is going to catch on.

20

Yeah, Bill. I was really surprised and extremely happy when I first woke up and saw that it was already so late. But, like I said, I hope it wasn’t just a fluke.

Now that I am on home hemo, I don’t get out as much since I have to be at home for my treatments. This internet thing is really cool. It let’s me interact with all kinds of people which helps me deal with the fact that I don’t get out much anymore.