RLS and Peritoneal dialysis

For everything and anything else not covered in the other RLS/WED sections.
Prim's Walks
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Joined: Fri May 06, 2016 10:18 pm

RLS and Peritoneal dialysis

Postby Prim's Walks » Sun Nov 20, 2016 4:33 am

Hi my friends,
I've had RLS since birth. My poor husband has acquired it because of dialysis. (It is actually listed as a symptom of dialysis).
Do we have any RLS sufferers that are on dialysis ? And if so, is there a specific med that works best for this scenario? There are just so many meds now, trying one by one will take a long time. By the way, his iron and ferritin levels are perfect.
Thanks everyone! I felt bad for me for so long... Now, I feel far worse, knowing someone I love so much is going through what I've been dealing with my whole life. :(
Prim/Jesusfish

ViewsAskew
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Re: RLS and Peritoneal dialysis

Postby ViewsAskew » Sun Nov 20, 2016 8:48 am

I am not aware of anyone active right now who is on dialysis. IIRC, something like 70% of people on dialysis have RLS. The Foundation might have a pamphlet on RLS and dialysis - are you a member? Also, Dr. B answers questions through email - somno@verizon.net. He might have some answers. I am not at home - maybe the blue book about RLS has something in it - Beth, Betty, Steve? Is yours handy?

So sorry about the situation, Prim. Hope you find a solution soon.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: RLS and Peritoneal dialysis

Postby Polar Bear » Sun Nov 20, 2016 2:47 pm

I have looked in our little blue book... Clinical Management of Restless Legs Syndrome - and don't see much about dialysis and RLS. There is a single paragraph on page 263 which discusses ESRD with uremia and the prevalence of RLS and stating it is important to treat RLS in these patients and that it should not be overlooked.

The book also states that "there is ample evidence for improvement of the secondary RLS associated with ESRD through kidney transplantation. As this option is not available to most uremic patients and dialysis does not improve RLS symptoms, these patients are treated somewhat similarly to those with idiopathic RLS taking into consideration the interaction of their renal failure..... most of the suggestions in the algorithm for managing daily RLS (with some exceptions) may be followed for this group."

I have also googled as I'm sure Prims Walk has likely already done, and come up with very little on how to treat RLS when secondary to dialysis.

Views suggestion to email Dr B is most probably the best way to get a reliable answer.

Pims - you have stated that your husband's ferritin is fine. Do you know the actual level, or has his doctor just told him it is fine. Fine for a non sufferer of RLS might be 20, however for an RLS sufferer we want it up over 75, hopefully 100.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Prim's Walks
Posts: 9
Joined: Fri May 06, 2016 10:18 pm

Re: RLS and Peritoneal dialysis

Postby Prim's Walks » Mon Nov 21, 2016 6:51 am

Dear ViewsAskew, Ann, and Polar Bear.
THANK YOU!!!! Thank you so so much! Since the 90's this group has been amazing, and it still is even after being gone for several years.
I used to be so active! Back before the right meds and constant insomnia, before a diagnosis of MS which is a nightmare with RLS, as I woke up paralyzed from the waist down. My legs could no longer wiggle on their own!! My arms had to take over moving them 24/7. Legs are heavy after a few hours of wiggling and bending and straightening, twisting and stressing to make the eebie jeebies stay at bay! Pretty much our worst nightmare come true.
Til my Prince Charming comes down with the same disorder! I feel sooo bad for him!! I've had 52 yrs and all of you to keep me sane...now he understands what I've been going through, I'd do anything to have it leave him alone!
Thanks for the help! You've gone above and beyond the call of duty... I'll email the Dr in the morning.
Sleep well.
Prim/Jesusfish

ViewsAskew
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Re: RLS and Peritoneal dialysis

Postby ViewsAskew » Tue Nov 22, 2016 8:50 am

Let us know what he says. It will help others, too, I imagine. And I thought your name was familiar. It's nice to see you again...but sorry you had a reason to come backi
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: RLS and Peritoneal dialysis

Postby badnights » Thu Nov 24, 2016 11:05 am

Oh how sad! I had a friend who had RLS/WED when he was on dialysis, but he was not the kind of person who knew what kind of medication he was taking (sort of a "little blue pill" kind of guy) so I gave up talking to him about it. His symptoms went away after a successful kidney transplant.

I've copied part of a chapter from a book I have, and attached the file here:
It's on treatment of WED/RLS in patients with ESRD, plus I included a couple of sections prior to the treatment section. I could copy the rest of it if you want. It might be interesting for you or your husband to read, but also for his doctor. The doctor will probably only be interested in the treatment section, though.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Prim's Walks
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Joined: Fri May 06, 2016 10:18 pm

Re: RLS and Peritoneal dialysis

Postby Prim's Walks » Sun Dec 04, 2016 1:42 am

Thank you Badnights!! That is hugely helpful! I will forward this onto his Kidney specialist on Monday morning!

Prim's Walks
Posts: 9
Joined: Fri May 06, 2016 10:18 pm

Re: RLS and Peritoneal dialysis

Postby Prim's Walks » Sun Dec 04, 2016 1:49 am

Viewsaskew, thanks for remembering my name. I don't think I left. I think the Internet grew up, and this site grew up. For a span of time I was without a computer :(
I couldn't remember my login and password. I thought my name was Jesusfish, cuz that's what I always use...though, thought I might have decided on some sleepless name instead. But two others remembered me too. Yay!!
Never forgot you. Just finally got a way back to you.
I do love being remembered!
Prim/Jesusfish

ViewsAskew
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Location: Chicago

Re: RLS and Peritoneal dialysis

Postby ViewsAskew » Mon Dec 05, 2016 4:38 am

Glad you found your way back. It's nice to be with people who get this dratted disease.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: RLS and Peritoneal dialysis

Postby Madmom02 » Fri Dec 16, 2016 10:52 pm

Hi, Prim,
I'm a relatively new member so didn't know you before. Hi! I understand about the MS thing 'cause me, too. My right leg fell asleep months ago (not paralyzed but still hard to move because I can't really sense where it is or feel it). But, I can still feel the creepy crawly biting RLS sensation and need to move is still there. I'm still walking but it involves a cane and/or walls and it takes a tremendous amount of effort and energy. And I can still wiggle my feet and stretch. Have you tried a counter-sensation like compression stockings or tickling or gently scratching your legs?

I'm sorry about your husband. In the newest Nightwalkers (which I got today) there was a summary of a study reported in the Asian Journal of Sports Medicine (June 2016) about leg stretching done during dialysis sessions where, after eight weeks, many of the people suffering RLS had improvement. Maybe that would help your husband.

Best,
MadMom


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