restless legs?

[cattlekid]

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 

[MommyChick]

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!

[ianch]

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.

   

[MommyChick]

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!! 

[ianch]

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.

[MommyChick]

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 

[Speedy1wrc]

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.

[PrimeTimer]

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.

[Speedy1wrc]

Tonic water didn't work for me. The only thing it did was give me the runs.

[Naturalfooter]

I suffer RLS as well. My doc prescribed Sinemet CR. One pill an hour before bed. Works really well for me.

[cassandra]

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.