Restless legs?..Restless Everything.

[Ken Shelmerdine]

I'm sat here doing this post. It's 3am and I went to bed about 11am. It used to be restless legs only but now after about  half an hour in bed my legs start feelling uncomfortable, I move them to another position and it feels like absolute heaven.....for about 10 seconds! Then soon after the rest of my body kicks in and it becomes like perpetual motion. This goes on for about 2 hours and then eventually I become as stir crazy as ferret in a sack and have to get out of bed and come down stairs have a cuppa and eat some toast.

It takes about an hour for it to wear off and then when I go back to bed I usually get straight off to sleep. Thank God! The clonazapam for restless legs doesn't seem to work anymore as neither does the sleeping tablet (Zopiclone).

I also get this restlessness in that son-of-a bitch dialysis chair after about 2 hours. It got so bad that I am now allowed to get out of the chair a few times per session and stand for a good few minutes and walk around just in the limited area my fistula lines allow me. I have this slow motion knack of getting out of the chair with my eye firmly on the pressure readings keeping my arm in about same position to my body and I works without infiltrating. There's no danger of crashing because my UF goal is always set at zero. At first they went mad when they saw me do it but now they just let me get on with it and it does make my time there at least bearable.

My next step is seeing my GP to maybe try another Parkinson's disease relaxant. Yes that's all the NHS can offer restless legs, Parkinson's disease drugs!! when I know for certain a drug has been released in the USA specifically designed for this problem but is not yet offered on the NHS. Can someone tell me both the generic name and the brand name in America please. Also if anyone has solved this in any way possible I would be interested to know.

Thanks for listening to my twilight moans and groans.

[greg10]

You probably don't need any more pills.  More likely you need a prescription of home dialysis or better forms of dialysis in center, perhaps nocturnal dialysis.  The following study was sponsored by NxStage, but it does show improvement of restless leg syndrome with home dialysis:

Impact of At-home Short Daily Hemodialysis on Restless Legs Symptoms and Sleep Disturbances
http://cjasn.asnjournals.org/content/early/2011/03/17/CJN.10451110.abstract

"Among patients with moderate-to-severe RLS (IRLS score ≥15), there was an even greater improvement in the IRLS score (23 versus 13). The intention-to-treat analysis yielded similar results. Over 12 months, there was decline in the percentage of patients reporting RLS (35% versus 26%) and those reporting moderate-to-severe RLS (59% versus 43%). There was a similar and sustained 12-month improvement in several scales of the sleep survey, after adjustment for presence of RLS and use of anxiolytics and hypnotics. "

Dr. Bertrand L. Jaber, Department of Medicine, St. Elizabeth's Medical Center, 736 Cambridge Street, Boston, MA 02135. Phone: 617-562-7832; Fax: 617-562-7797; E-mail: bertrand.jaber@caritaschristi.org.
Abstract

Summary

Background and objectives Restless legs syndrome (RLS) and sleep disturbances are common among in-center hemodialysis patients and are associated with increased morbidity/mortality.

Design, setting, participants, & measurements The FREEDOM study is an ongoing prospective cohort study investigating the benefits of home short daily hemodialysis (SDHD) (6 times/week). In this interim report, we examine the long-term effect of SDHD on the prevalence and severity of RLS, as measured by the International Restless Legs Syndrome (IRLS) Study Group rating scale, and sleep disturbances, as measured by the Medical Outcomes Study sleep survey.

Results 235 participants were included in this report (intention-to-treat cohort), of which 127 completed the 12-month follow-up (per-protocol cohort). Mean age was 52 years, 55% had an arteriovenous fistula, and 40% suffered from RLS. In the per-protocol analysis, among patients with RLS, the mean IRLS score improved significantly at month 12, after adjustment for use of RLS-related medications (18 versus 11). Among patients with moderate-to-severe RLS (IRLS score ≥15), there was an even greater improvement in the IRLS score (23 versus 13). The intention-to-treat analysis yielded similar results. Over 12 months, there was decline in the percentage of patients reporting RLS (35% versus 26%) and those reporting moderate-to-severe RLS (59% versus 43%). There was a similar and sustained 12-month improvement in several scales of the sleep survey, after adjustment for presence of RLS and use of anxiolytics and hypnotics.

Conclusions Home SDHD is associated with long-term improvement in the prevalence and severity of RLS and sleep disturbances.

[Henry P Snicklesnorter]

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[Jean]

I am so glad this subject has been brought up. I take a muscle relaxer every night and also drink a couple of mouthfuls of tonic water ( KS's suggestion) And nothing helps. I am not on D yet, but was thinking it is related to degenerative disk disease in my back. It just drives me nutty. I start to twitch like I have muscular dystrophy or something. Always in the evening, but if I try to take a nap in the daytime, it starts up again. However, it does not bother me at night at all. Just the charlie horses and muscle cramps once I go to sleep. Sure does wake you up in a hurry tho. Hope some one has a good solution. 

[Willis]

I've had RLS for years and it always effected my right side more than the left.

Now I don't think this is the complete answer, but I had a case of severe plantar fasciitis in my RIGHT foot and after getting orthotics and doing some exercises the RLS was not as bad. For very little cost you can buy a booty that keeps your foot from extending while in bed (i.e., keeps it in a normal 90deg position) and that may make a big difference.

Oh, and I think statins aggravate this condition for me as well.

 

[GoingThere]

I too had RLS, before D and few months after beginning D. The doctor gave me Mirapexin, which helped immediately. Now I'm on 3x5 hours of D and RLS symptoms completely gone.

Take care!

[billybags]

Ken my husband is in the same boat, had RLS for about 2 years, it drives both of us to distraction. He never has a good sleep if at all. Being on the cycler does not help because he can not walk around. His cycler finishes at 5-30 in the morning and so he gets up and tries every chair and sofa in the lounge, nothing helps, its as though his brain does not cut off,  oh for a switch. His doctor gave him Gabaparten tablets and for 2 nights they worked but they left him really dopey in the morning, so he stopped taking them. I have bought him a radio for the bedroom, he has ear phones in most nights. I think it is the continuous movements all night that does him. He has to go to bed after lunch for a rest and his legs never bother him then. Whats that all about? We both dread night time.

[cariad]

Ken, I am so sorry you are going through this. My husband (not on dialysis) has restless leg and some related syndrome where he can be very active at night, whilst sleeping. Extremely annoying as the spouse, but I am told they are two different conditions.

To answer your original question, he is in the US and he was originally prescribed Requip (ropinirole tablets) and those made his related condition worse (where he would make random jerking movements through his sleep). Then he tried Mirapex (pramipexole dihydrochloride tablets) and those did the trick. However, his case is mild and he rarely needs to take them. He says the more fatigued he is before he retires for the night, the worse the RLS. Mirapex is for Parkinsons though, so I wouldn't worry too much about what it was originally designed to treat, just whether or not it works. He has not tried gabapentin, but that is for nerve pain and must also do something to stop the neurons in your leg firing randomly. I feel for you. I had akathesia (a related condition) for one miserable night after coming off opioids and I was ready to jump off a building.

Hope this helps! Best of luck!

[del]

Hubby had restless everything for years. I thought I was going to go nuts so I can just imagine how he felt.  When he changed from PD to hemo it helped.  While he was on PD there were times I got hit , kicked in the head, etc.  WE ended up buying a king size bed.  It was that or twin beds!!!  When he started hemo it got a lot better for a while until his time got cut back from 4 hours to 3 and a half hours. It came back big time!!  He asked to ahve his time increased to 4 hrs 15 mins and it got better again.  Since starting nocturnal he has been doing really well.  If his legs get cold now they will get restless but on fine again once they warm up.

[Ken Shelmerdine]

After doing the Duvet Riverdance for two hours I have come downstairs and tried to to distract myself reading HID posts. I am in a stting position and my legs are so restless I can't even concentrate properly on doing this post. Can't write any more, just got to pace the room till it goes. 

[The Noob]

ok, let me clarify that i am not on dialysis. its hubby. but i have this same thing for a number of years.
i don't know if this will apply or even help but i can relate what helped for me.
i started having this issue some years ago. went to several docs, tried the drug route. nothing helped. was told it was low potassium. now for a dialysis patient thats a good thing.
finally a friend at the time who was a holistic doc, came over and looked me up and down and said i need a chiropractor.
so i gave in and went. i had been told by other docs that it was sugar, in my head, whatever.
my legs would jerk and move uncontrollably all night (always at night). then it became my whole body.

so i went to the chiro. he was awesome. took xray and showed me i had a few bone spurs on my spine (small protusions off the verterbre probably caused by some physical trauma years before that developed). after the first treatment it all stopped! i mean nothing. i went for a few weeks more. just quick adjustment. i could feel the relief as soon as i stood up and cried.
then i went back once a month for awhile as we had insurance. felt better and better.

now, we only have insurance on hubby. so i have not been back for a couple years and a year ago it started all over again. seems to be worse if i am more physically busy that day.
i need to go back and i will. he says if i just have 1-2 treatments a year that should control it.
he showed me a chart with my xray. what he says was happening was too much strain pressing on a nerve which caused it.

i took son and hubby there a few times as well. but this was pre-D.

i am not the D patient, so don't know if this would help or not. just that i can relate to the no sleep thing!

i don't know if dialysis patients use a chiro or not? don't think it could hurt?