Insominia RLS worse on dialysis

[GeezerHippie]

Now that he's settled in at home on the cycler, my boyfriend has terrible insomnia and his RLS is much worse. Actually, it's not Restless Leg, it's Restless Whole Body.  He jerks and twitches and it's like trying to sleep with at rototiller. He doesn't yet feel comfortable being tethered to the machine and I wonder if that might be making things worse. He'll doze for maybe an hour and then have to sit on the edge of the bed or stand and pace next to the bed. Here's the weird thing: When he was in the hospital and they started him "early" on PD (within two weeks of catheter implant) he said he slept great.

Before the surgery he had been very, very sick and had been sleeping like 20 hours a day and could barely stay awake for anything.  I had to fight with the VA doctors to give him EPO and iron infusions.  When even that didn't bring up his numbers they gave him a transfusion along with EPO and iron. He was like a new man but it didn't last but a couple of days.  I'm wondering if the reason he slept so well in the hospital was because of the EPO and iron.  The doctors had prescribed gabapentin pre-surgery and he takes it before bed but it doesn't seem to make any difference.

He says he does feel a little better during the day since he started on PD, but this night time problem is really getting to both of us. Anybody have any experience, suggestions?  Don't say separate bedrooms. That's NOT an option.

Thanks

[cattlekid]

As much as I didn't want to do it, I had to resort to pharmaceuticals.  I take Requip (ropinerole) nightly for my RLS.  The insomnia just started a couple of weeks ago and luckily seems to have subsided.  However, my neph did say that I could give some Benadryl a try if necessary before moving on to the heavier-duty stuff. 

Either way, def. check with your neph first.

[GeezerHippie]

Thanks.  He's already taking 2 bendryl at night. He was actually on heavier stuff but the doctors thought it might be having a paradoxical effect and making things worse. If I took 2 bendryl I'd be out for 24 hours.

[tito]

I had "whole body" RLS, and also nerve pain in my leg from a botched hip replacement (sciatic palsy). I would have to get up, pace, whatever. I started to take oxycontin for the pain, and that helped, but I didn't want to be on a narcotic. My nephrologist prescribed gabapentin (100-300 mg a night - I take 200) and that has been wonderful. I go to sleep and stay asleep. Sometimes people need more gabapentin, so make sure your boyfriend has enough. Of course, it doesn't work for everyone. And it makes me shake a bit and feel out of it.

[Rerun]

Bendryl gives me an adverse reaction and I'm up all night.  I have to take a 1/4 tablet of it and then it gets me to sleep. 

[highway61]

For the short time I was on PD I did feel better than before being on PD. I don't recall having much problems sleeping with the cycler, per se.

I was still more tired than I am now.

The only times I remember having trouble sleeping was when I had done a few too many greens and had bad leg cramps that woke me up in the middle of the night in pain.

I was trying to stay on yellows, but there were times I had to go back to greens to get extra fluid off.

[gothiclovemonkey]

stop taking benedryl it makes RLS worse!!!!!!
i have whole body rls, and benadryl makes it worse! so does anti nausea meds...

[Jean]

Rerun advised a swig or two of tonic water with quinine in it at bedtime and it helps. I co incidentally was doing some stretching exercises for back pain and discovered if I do the stretching exercises at least every other day then bingo, no RLS and no body
RLS. I have no clue why!!

[JLM]

There are some who tuck a bar of soap at the foot of the bed under the covers.  At this point, give it a try, anything is worth giving it a try.  If that doesn't work, you can always use the soap the wash up with.  Your next question --- any brand......

[billybags]

Wow  R LS is awful and yes you are right it is like sleeping with a restless tiger. The legs are all over the place, I have lost count of the times I have been kicked, pushed and laid on. Husband has gone through the Gaberpantin bit and it did not help, it made him feel dozy in the morning. Insomnia is a another fact of life with dialysis I think most people on it are the same. Some nights are better than others. The soap dose not work for us, have tried it. I felt such a silly bog**r for putting it in the bed. I think you have to look at bloods for most of these symptoms. He now only takes Paracetamol at night time. When he wakes, he sits on the side of the bed,he can not go far because of his line, he listens to his music. It is horrible not being able to sleep.

[austinsoul2011]

Agreed, PD sure does wreak havoc on trying to get a good night's sleep!  My dad is constantly tossing and turning around on the couch, moving his legs and sitting up at times throughout the night -- and I hear all this from my bedroom, which is a good 50 feet away from where he sleeps. Its the big reason why he doesn't sleep in the master bedroom with my mom, or she'd never get any rest.

What has recently helped him is taking a sleeping pill, temazepam.  He still gets up during the night, but not as much as he did before.  HTH.

[smcd23]

My SO has this problem. He was on klonopin when it was just RLS, but lately it's been entire body restlessness, and it's making me crazy (and exhausted). He has seroquel to take as a mood stabilizer to counteract any negative side effects of his anti depressant, but that stuff knocks him out, dead to the world, FOREVER. And that's just not a good mix when I have to be out the door in the morning and he has to mind the 2 year old. Requip caused him to periodically miss days because he couldn't wake up, so that's out, too.

Aside from the prescription stuff, he's also tried melatonin and valarian root. Sadly, neither have helped.

Sometimes if he goes for a walk, he is able to fall asleep. Maybe a little exercise before bed would help?

[KathyT1311]

My dr just gave me a script for valium to try for anxiety and insomnia. Unfortunately insomnia is something that is common when you are on dialysis. I go from one extreme to the other. In the insomnia side now, in 6 months I'll be sleeping all the time. Plus sleeping pills do nothing for me. Has he tried another anti depressant? I know when I was taking I think it was celebrex I had no emotion what so ever. It made me sleepy but you could tell me someone I loved had just died and I was like that sad and felt nothing. No emotion at all.