I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MommyChick on July 20, 2012, 10:27:56 PM
-
Does anyone here also deal with restless legs?
The doctor has me on ropinorolol & has upped the dosage a few times, but it doesn't seem to be helping. I was told that kidney disease can trigger it.
Anyone dealing with this too? or any suggestions? I'm tired of not being able to sleep through the night properly &/or having my legs drive me so crazy that I cant stand sitting, makes it so hard when I have to be on dialysis for 3/hrs & stuck in a chair!!!
:thx;
-
Try a very hot shower just before bed and mayb e even a back rub seems to help me.
-
I am on requip also and they won't increase the dose for me over 1 mg. The dr. added Restoril (a mild sleeping medication) and the combo is helping somewhat.
I find that exercise does help - when it hits during the day (I have a desk job) I go for a quick walk between floors and that seems to calm it down enough to get through the rest of the day.
-
I am on requip also and they won't increase the dose for me over 1 mg. The dr. added Restoril (a mild sleeping medication) and the combo is helping somewhat.
I find that exercise does help - when it hits during the day (I have a desk job) I go for a quick walk between floors and that seems to calm it down enough to get through the rest of the day.
Walking & standing always seems to help, but I hate taking a sleeping med at night since I have a little one. Last night I was up till 3am before I was able to fall asleep. :stressed;
-
I think most people who are on dialysis suffer with RLS. It is awful, my husband used to toss about at night . Pain meds never touched him. He use to stand up, move about, any thing to get a bit of peace. He is on a cycler so he could not go for a walk. It has to do with your bloods and minerals. He still suffers but not as much as he used too. We found when his iron was low his legs would play up. His neph gave him folic acid tablets, I think you try any thing to stop it.
-
I think most people who are on dialysis suffer with RLS. It is awful, my husband used to toss about at night . Pain meds never touched him. He use to stand up, move about, any thing to get a bit of peace. He is on a cycler so he could not go for a walk. It has to do with your bloods and minerals. He still suffers but not as much as he used too. We found when his iron was low his legs would play up. His neph gave him folic acid tablets, I think you try any thing to stop it.
I never had issues all these years then in May 2010 when I became pregnant it dealt kicked in & my nephrologist told me it was a combo of both. I used to be in folic acid but didn't seem to help me, my hubby is lucky he works 3rd shift.. I'd be kicking him all night. :boxing;
-
I've been on Dialysis for 9 years now and RLS was a big problem for me also. After i broke my hand the doc prescribed Hydrocodone for me. Turns out that stopped the RLS for me, I just take it as prescribed before treatment and haven't had a recurrence. I know it's bad ju-ju for some but it works for me. :twocents;
-
My wife has tried most of the meds specifically made for RLS with no success. The only thing that seemed to work for her is opiates. Vicodin will suffice most of the time but what really works for her is Tramadol. She continues to take Tramadol every night and sleeps like a baby. She started out with 1 50mg tablet every night over a year ago but has moved up to 1 & a half tablets since then due to tolerance. Diet will also play a significant role in how your legs effect you. We learned to avoid anything with high b12 vitamin content, caffeine or sugar a few hours before bed as this would make her RLS worse.
-
My wife has tried most of the meds specifically made for RLS with no success. The only thing that seemed to work for her is opiates. Vicodin will suffice most of the time but what really works for her is Tramadol. She continues to take Tramadol every night and sleeps like a baby. She started out with 1 50mg tablet every night over a year ago but has moved up to 1 & a half tablets since then due to tolerance. Diet will also play a significant role in how your legs effect you. We learned to avoid anything with high b12 vitamin content, caffeine or sugar a few hours before bed as this would make her RLS worse.
You could be right about caffine/ sugar. I like my caffine & sugar :bandance;
-
I am on requip also and they won't increase the dose for me over 1 mg.
I wonder why? My husband took 6 mg. (two 3 mg. tablets at a time).
-
Good question. My uncle takes 12 mg per day but he has full fledged Parkinson's.
-
Yeah that is weird. :waiting;
I do think that some doctors are more understanding then others when it comes to our health problems though!
-
Restless legs start 1.5 years ago, after 4.5 trouble-free years in-center. Happened right out of the wild blue yonder. Another idiopathic diagnosis. OH, HOW I LOVE THAT! The restlessness was so madding it would wake me up at night and I would have to sit up for hours.
Requip did not work. Conducted my own experiments and found, paradoxically, that hydrocodone (Vicodin) 7.5 mg codeine dose with minimal acetaminophen component did the trick.
-
Restless legs start 1.5 years ago, after 4.5 trouble-free years in-center. Happened right out of the wild blue yonder. Another idiopathic diagnosis. OH, HOW I LOVE THAT! The restlessness was so madding it would wake me up at night and I would have to sit up for hours.
Requip did not work. Conducted my own experiments and found, paradoxically, that hydrocodone (Vicodin) 7.5 mg codeine dose with minimal acetaminophen component did the trick.
Oh the craziness :bandance;
-
RLS is painful and will drive a person mad literaly. I suffers with it for months finaly told neph I can't take it anymore. Nothing worked for me and he put me on sensipar.
Amen that worked at least for me.
He said take one a night I'm not big on meds so I experimented with it. Ends up one pill every week or two is all I need.
I take one when I start feeling the jerks in my legs. Then I'm good for a week or so. When I feel the jerks and pain ill take one again.
It saved my sanity.
Best of luck to all suffering. Please try sensipar if u can.
-
RLS is painful and will drive a person mad literaly. I suffers with it for months finaly told neph I can't take it anymore. Nothing worked for me and he put me on sensipar.
Amen that worked at least for me.
He said take one a night I'm not big on meds so I experimented with it. Ends up one pill every week or two is all I need.
I take one when I start feeling the jerks in my legs. Then I'm good for a week or so. When I feel the jerks and pain ill take one again.
It saved my sanity.
Best of luck to all suffering. Please try sensipar if u can.
I find that interesting... I have been taking sensipar for years now. I take 30mg once a night. But I have been taking it to control my calcium levels. Never once noticed it helping my RLS.
For RLS my neph. doctor has me on Clonidine(for BP & RLS) & Ropinorol. I have been on kidney meds most my life so I just think my body hsa built up a tolerance for meds. that should normally work for most people. It sucks !!!
-
RLS is painful and will drive a person mad literaly. I suffers with it for months finaly told neph I can't take it anymore. Nothing worked for me and he put me on sensipar.
Amen that worked at least for me.
He said take one a night I'm not big on meds so I experimented with it. Ends up one pill every week or two is all I need.
I take one when I start feeling the jerks in my legs. Then I'm good for a week or so. When I feel the jerks and pain ill take one again.
It saved my sanity.
Best of luck to all suffering. Please try sensipar if u can.
Strange that sensipar would eliminate RLS considering it manages the thyroid. I guess maybe your calcium levels not being regulated caused your RLS? ??? My wife also takes sensipar but it never had any effect on her RLS. Very interesting and I'm happy it works for you.
-
thanks for your mail on RLS. I have had my thyroid removed and have noticed an increase in RLS since. I will be sleeping on dialysis and will be awakened by my legs jumping. very strange for me and those who may notice. I am also on one alphacalidol. what do you think?
-
I suffer very badly from this.
Can't relax my legs at night. Need to get up and walk.
Fidget all the time in bed or in dialysis chair.
Can be linked to low iron levels (my hb has been very low for a few months)
Have now been prescribed clonazepam at night which does work and helps me sleep much better :waving;
-
I suffer from restless leg too! It really gets to me when I'm sitting at dialysis, I fidget like crazy. I don't take any meds for it because frankly I don't want to add another med to my daily regime and chances are it won't work anyways. Plus... who knows what side affects it would cause. So I haven't tried it.
-
I am finding the clonazepam (0.5mg) tablets are brilliant!!!
I take one an hour before dialysis and one at bedtime.
I can sit still and relaxed in the dialysis chair for 4 hours and i am sleeping through to early morning. :bow; :bow; :bow;
Has improved my humour greatly! And no apparent side effects. I think it is worth taking because The Restless Legs Syndrome was really making me miserable before.
:2thumbsup; :2thumbsup; :2thumbsup;
-
SteveK87, sensipar does not act on the thyroid, it acts on the parathyroid. Completely different glands. I believe that high phosphate levels contribute to RLs, so taking snsipar makes sense. I just wonder why paul.karen's doc. would only suggest an occasional dose?
. One reason why the docs. may be reluctant to increase the dose of ropinerol./requip. is that one of the side effects of it, is that you can fall asleep without earning during the day without warning. Not a great thing to happen if you are driving. Walking around on a cold floor and keeping my feet cool seems to help me.
-
Can I just throw this out there - When I am sleeping on my dialysis chair I sometime hag I feet off the side and fall asleep, I am then awakened by it jumping all on its own. Does this mean I need some type of sleeping tablets?
-
Charmer, that is probably periodic leg movements not restless leg syndrome, if it isn't accompanied by that irritating need to move them. If it is not disturbing your sleep too much, then I wouldn't personally bother with sleeping meds. Keep them for a time when you really need them as it is easy ti build up tolerance to them and they no longer work.
-
Weird but interesting fact... I had my transplant 6 months back and since then my RLS has completely gone away :)
-
Happened to me too. My pulmonary doctor was pleasantly surprised. No more Requip or Restoril since my transplant a year ago.
Weird but interesting fact... I had my transplant 6 months back and since then my RLS has completely gone away :)
-
Happened to me too. My pulmonary doctor was pleasantly surprised. No more Requip or Restoril since my transplant a year ago.
Weird but interesting fact... I had my transplant 6 months back and since then my RLS has completely gone away :)
Yes I was able to stop those meds. as well!
-
It went way most likely because the new kidney was doing its job. This suggests to me that pre transplant there was insufficient dialysis for your individual needs. Sometimes this can be remedied by medication, but ultimately more time on dialysis would have probably had the same effect.
I had terrible RLS when in-centre which the nurses put down to me not taking enough phosphate binders (fair enough) but on my 10 hour sessions at home I have not experienced RSL for 2 years and have not taken any binders for over 8 months.
-
It went way most likely because the new kidney was doing its job. This suggests to me that pre transplant there was insufficient dialysis for your individual needs. Sometimes this can be remedied by medication, but ultimately more time on dialysis would have probably had the same effect.
I had terrible RLS when in-centre which the nurses put down to me not taking enough phosphate binders (fair enough) but on my 10 hour sessions at home I have not experienced RSL for 2 years and have not taken any binders for over 8 months.
I was on dialysis a total of 8.5 years. The first 5 years I never had any effects or symptoms of the RLS. Only when I became pregnant on dialysis did the RLS kick in, but then it stuck with me till my transplant. It was the worst!
I am so glad that you were able to get your RLS under control! I wouldn't wish that on anyone!! Best of luck to you!! :)
-
Thanks MommyChick, yes its pretty nasty. From memory, when i swapped from tunnel line to Fistula the RLS got worse as the pump speed was cut by 30%. I recall one weekend I got no sleep for the 3days so needed meds to sleep which is dangerous with kidney failure as dialysis doesn't remove.
So yes i cant complain now that I don't get it. Its all about self management.
I would say a pregancy would create a lot more toxins as the body is supporting two lifeforms, which might be why it started then. I know in NZ when there is seriously impaired function (not on dialysis) the pressure of pregnancy can finish the kidney's off. In my case as I'm a guy a sickness finished mine off.
-
Thanks MommyChick, yes its pretty nasty. From memory, when i swapped from tunnel line to Fistula the RLS got worse as the pump speed was cut by 30%. I recall one weekend I got no sleep for the 3days so needed meds to sleep which is dangerous with kidney failure as dialysis doesn't remove.
So yes i cant complain now that I don't get it. Its all about self management.
I would say a pregancy would create a lot more toxins as the body is supporting two lifeforms, which might be why it started then. I know in NZ when there is seriously impaired function (not on dialysis) the pressure of pregnancy can finish the kidney's off. In my case as I'm a guy a sickness finished mine off.
Yeah, I had no kidneys when I started dialysis due to having to have a nephrectomy after my first kidney rejected myself after 9.5 years. So here in the US, I did have to learn with my doctors while I was pregnant because no one really knew what the outcome would be, I was a rare case! So my body did have to work over time in all that I did, along with dialysis 6 days a week. It was all worth it now though! I have a happy and healthy 3 year old son :2thumbsup;
-
I have RLS and have found a few things that help.
Is your RLS the uncomfortable feeling and/or is accompanied by random muscle twitches?
Look at your labs, high aluminum and magnesium can cause the muscle twitches. Check the NxStage forum here for the SAK recall thread. Some patients have listed symptoms that appear to be linked to the high aluminum.
For me Gabapentin works the best for RLS. It's a secondary effect of the drug, but it seems to work. It was initially prescribed for cramping, which it helps greatly. But when researching it I found reference to the RLS and it works. I only take 100mg daily while others take upwards of 400mg+. It's a nerve agent so there are side effects. It does dull nerve sensitivity across the board. It may be a good thing?
For extreme cramping I take 50mg Tramadol PRN. That works with the Gabapentin and virtually eliminates RLS.
Something else that works is Benadryl. It helps with sleeping too. Alone or with the other two it seems to have a modest effect.
Taking a cocktail of all three in the worst of situations "fixes" most everything. Please be aware of any and all contrindications before even thinking about it though.
-
I have a terrible time with restless legs so here's what I do: Some nites I sleep with a firm pillow rolled up or a towel rolled up and tucked under my knees or calves. It seems to apply just the right amount of pressure my legs like. Another trick is putting a heated rice bag under or between my legs. I simply fill a long soft tube sock with white jasmin rice, tie it off with a knot and heat it for 2 minutes in the microwave with a cup of water sitting next to it. The cup of water creates moist heat and also prevents the rice from burning. Sometimes I stir the rice in a bowl with several drops of my favorite essential oil scent before filling a sock. Smells good! The heat from the rice bags may not last for hours but...helps with pain and lets me relax enough to finally fall asleep. That and of course, a small dose of generic Ambien! But seriously, I like using these long tube socks because they are pliable enough to put them where you need to apply heat the most...neck, back, legs, etc.. And oh, the best thing I use for leg cramps or any kind of muscle cramping is tonic water with quinine in it. Tastes awful but works fast.
-
Tonic water didn't work for me. The only thing it did was give me the runs.
-
I suffer RLS as well. My doc prescribed Sinemet CR. One pill an hour before bed. Works really well for me.
-
Wow, only after reading all your posts do I realise that I haven't had RLS since I'm on Nxstage.
Before that I used Diazepam for cramps, and RLS, anxiety, and general stress. Now I use it cos I'm addicted I suppose, but in a way I'm addicted to D too.