Need Help With RLS from Kidney Failure & Nausea Symptoms

[SteveK87]

My wife developed RLS (Restless Leg Syndrome for those who may not know) after end stage occurred accompanied by dialysis.  Through these past months I've noticed the epogen and iron shots play a reasonable factor in the severity of the RLS, and also keeping a good diet going can make it better.  She still has those rough nights in which she is in tears because the sensation is so intense and she can't fall asleep.  Keep in mind she suffers from insomnia which was a previous issue before kidney failure.  Vicodin helps her the best but it is not recommended by her doctor because of the acetaminophen content not being completely filtered through dialysis.  So, right now she takes 1 and a half 50mg dose of Tramadol which seems to help but she is developing a tolerance to it.  She originally started off with 1 50mg tablet of Tramadol a few months ago and it worked great but like I said she is developing a tolerance now.  I did some research and found out Norco has the same content as Vicodin with less acetaminophen so she will be asking about that her doctor next visit.  So does anyone have any recommendations of home remedies or any prescriptions that you have heard of or maybe worked for yourself?

My next question is does anyone have remedies for nausea?  Only recently she started developing this side effect a little before bed and it is more extreme when she wakes up in the morning.  It is to the point now she ends up going into class late because she feels so sick in the morning.  She hasn't dramatically changed anything regarding her medications or diet..if anything her diet is better now.  As I mentioned before she takes tramadol before bed so do you think that could be causing it?  Also for a phosphorus binder she takes Fosrenol 1000mg chew-able tablets with meals.  She usually eats right after treatment around 9pm, before bed.  Do you think maybe now since she is eating healthier and trying to avoid high content phosphorus foods that the 1000mg is too much and may be causing the nausea?

Sorry for the extreeemmeelly long post but I figured being thorough was the best bet to getting the best answers.  Thanks a lot everyone.

Steve

[sullidog]

For RLS I take a very small .50 mg of colonopin, and for nauzea I take 8 mg of zofran, there's also phinergan but  the side affects are not pleasant and makes you sleepy.

[jeannea]

What kind of dialysis is she doing? In center hemo, home hemo, PD? It can make a difference.

I'm on PD. I get quite a bit of nausea. I use Zofran ODT for the nausea. But she should also check her electrolyte levels. Nausea can be so many reasons - diet, type of dialysis, whether the dialysis is working well, etc. But if you're stuck living with it Zofran helps. Get the ODT which is the pills that dissolve on the tongue.

Recently, I hurt my shoulder and the doc gave me Flexeril, a muscle relaxer. Put me to sleep right away. I don't know if it's safe for long term use but you can ask the doc. I don't have restless legs often so I don't treat it. But I wonder if she still has too much toxins in her blood. If she does in center hemo is it worse on the weekend when there's an extra day without a treatment?

[SteveK87]

She does home hemo 5 days a week for 2 hrs and 20min MTWFS. Sunday and Thursday are her off days, which has been OKed by her doctors and has been working well for awhile.  She has enough control to not be on a fluid restriction but it seems sometimes she may not be watching it too close on her off days from the looks of her ankles and face (the 2 areas that puff up the most when she has fluid on).  Maybe that is the cause of the RLS?  She has tried clonopin but it actually made the RLS 100x worse for her.  She tried for 3 nights and pretty much cried herself to sleep because the RLS was so intense.  I remember reading somewhere the nausea may also be caused from the, how would you call it, prescription of the SAC fluid or something?  I don't see how it would just start effecting her now though.  Her most recent blood work came back with flying colors...the first time I didn't have to get on her case about not enough protein or elevated phosphorus levels.  I'll try to get her to drink some Gatorade to see if it could be the electrolytes and I'll also monitor her on her off days to see if it could be toxin or fluid build up that's making it worse.  I'll also mention the Zofran.  Any other thoughts?

[Cordelia]

RLS is nasty. Had it terrible right before I started dialysis .....it was always worse at night and would keep me awake, that and the severe itching and severe insomnia.  Once I started D, it went away. I still get it once in awhile, but not near as bad.

I hope it will all get sorted out in time.       

[cattlekid]

Please don't give her Gatorade.  It has potassium. 

For my RLS, I used to take Requip.  Started with just a half a milligram and never really had to go higher than that.  When I started home hemo, I actually stopped taking the Requip as my symptoms of RLS have gone by the wayside.

Others swear by quinine.  You might want to start out with a glass of tonic water before bed. 

[Arcticat2000]

I had RLS real bad for the first few years of dialysis. I'm currently incenter nocturnal. I tried Norco and it seems to be the only thing that works for me, i've been taking it for several years now and only during treatment. No more RLS!  As for nausea, try soda crackers. I keep them in my locker for nausea and they work for me as well. My labs are great and my liver is fine. 

[SteveK87]

cattlekid - Thanks for the heads up about the potassium..I know potassium is something to definitely watch and didn't realize it had a high content in Gatorade.  Also, she has tried Requip in the past with no success.  Have not heard of quinine from the Tonic water, so I guess anything is worth a shot.

Arcticat2000 - I'm glad to hear the Norco is working well for you, I'll have to have her mention this to the doctor next week.  I'm wondering if your schedule is enough to remove the acetaminophen so it doesn't effect you or if the content of the acetaminophen in the Norco isn't significant enough to even cause problems in the first place.  I'll have to mention the crackers before bed or in the morning..it's one of her favorite snacks during dialysis so I don't think she would have a problem eating some before bed or when she wakes up.

Thanks for all the tips everyone..I'll keep everyone updated with how things work out.

[sullidog]

2 hrs and 20 mins? that doesn't sound long enough to me.

[SteveK87]

sullidog - according to the labs the dialysis is cleaning her blood well with that time frame.  From my understanding home hemo patients who do 5 or 6 days a week typically do between 2 to 3 hr sessions though I'm not 100% sure about that.

As for the doctor visit she was prescribed Vicodin and was told the Norcos have the same acetaminophen content as Vicodin.  She was prescribed the 750's and all seems well.  My wife says the Vicodins work better because they act quicker than the Tramadols. The game plan is the doctor will alternate the Vicodin and Tramadols when needed so a tolerance and or dependency will not develop for either one.

I would also like to state that IMO the iron levels play a roll with the intensity of the RLS.  When her iron levels become low her legs bother her much more.  As of late her labs have been perfect and the RLS is not as nearly intense.  The real challenge now is maintaining those iron levels.