Restless Leg Syndrome

TracyLynn72
TracyLynn72 Member Posts: 839
in Head and Neck Cancer #1

 

I have to admit, I used to think this wasn't a "real" thing.  I had heard of it and my mom swears she has it, so I blew it off because she is one of those people who has EVERYTHING.  Well, I have been proven way wrong.

 

After surgery,they kept those leg compression things on me for the whole 12 days I was in the hospital.  When I got home, it took me over an hour to get to sleep feeling the creepy crawlies and terrible RLS.  It lasted about 3 weeks and then just went away.  I had my rads for about 7 weeks and not one issue with RLS.  Now that I'm done with treatment, it's back! It came back about a week after rads ended.  It's not as bad as before and I can usually get to sleep within a half hour or so.  

 

What do you do for this?  I eat a banana everyday, I walk around a lot of the day (at work and home) so I get some exercise and when it starts at night, I can get up and walk up and down the stairs a few times and then it seems better.  Any suggestions?  I'm not a big medicine taker, but will if I absolutely have to.  I'm calling the nurse about my tube issues this morning, but they seem to want to give me a pill for everything.  

Comments

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #2
    RLS

    Hi Tracy,

    I experienced this as a result of pain med withdrawal. There were other symptoms but the RLS was pretty intense. 5mg of oxycodone relieved it as well as the other symptoms. I'm fully expecting to experience it again as I begin the process of weaning off the drugs. However, I also currently am and fully expect that I will be on some type of drug for the rest of my life. 

    "T"

  • robswife87
    robswife87 Member Posts: 209
    #3
    fishmanpa said:

    RLS

    Hi Tracy,

    I experienced this as a result of pain med withdrawal. There were other symptoms but the RLS was pretty intense. 5mg of oxycodone relieved it as well as the other symptoms. I'm fully expecting to experience it again as I begin the process of weaning off the drugs. However, I also currently am and fully expect that I will be on some type of drug for the rest of my life. 

    "T"

    Same as "T"

    Rob is having problems with the RLS because of withdrawl. He was on 3 morphine pills a day weaned down. Had no problems until he was on none.

    Rob has given in and taken some oxycodone at bedtime just so he could get some sleep. We are going to drop 1cc at a time hoping it will work. 

    Sandy

     

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #4
    I wonder

    why it's hitting me again?  I haven't been on any pain meds.  I wasn't on any in the hospital (after surgery) or during rads.  It seems to be not near as bad this time around but it's definitely a strange and annoying feeling.  I just left a message for the nurse :)  Thank y'all! 

  • Grandmax4
    Grandmax4 Member Posts: 723
    #5
    Weird

    I know this sounds weird, but it works for me...put a bar of soap ( any kind, unwrapped ) in your bed..when the rsl starts just hold the soap with your feet~~~this is an old "down the hills" remedy handed down in my family..nothing to lose trying

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #6
    Grandmax4 said:

    Weird

    I know this sounds weird, but it works for me...put a bar of soap ( any kind, unwrapped ) in your bed..when the rsl starts just hold the soap with your feet~~~this is an old "down the hills" remedy handed down in my family..nothing to lose trying

    My aunt

    told me that same thing this morning!  I'm going to try it!!  Thank you!!

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #7
    Grandmax4 said:

    Weird

    I know this sounds weird, but it works for me...put a bar of soap ( any kind, unwrapped ) in your bed..when the rsl starts just hold the soap with your feet~~~this is an old "down the hills" remedy handed down in my family..nothing to lose trying

    I don't know

    if it's just in my mind or what but IT WORKED!!  I had heard this before and it said that you could use wrapped or unwrapped so I took a new bar of soap and put it under my knees.  I only had about 5 minutes of RLS happen and then I fell asleep.  It's worked the last 2 nights.  Strange, but true.  The nurse offered some pills to help, but I'd rather try other things first.  Thanks for the tip!!

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #8
    Grandmax4 said:

    Weird

    I know this sounds weird, but it works for me...put a bar of soap ( any kind, unwrapped ) in your bed..when the rsl starts just hold the soap with your feet~~~this is an old "down the hills" remedy handed down in my family..nothing to lose trying

    Hmmmm...

    So I figured what the heck... while my feet smelled better, it didn't work and the cat gave me funny looks ;)~ (j/k)

    "T"

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #9
    fishmanpa said:

    Hmmmm...

    So I figured what the heck... while my feet smelled better, it didn't work and the cat gave me funny looks ;)~ (j/k)

    "T"

    That made me LOL

    That was funny!!  I needed that after a crazy morning at work!  I think I may have "talked myself" into it working (or I was overly tired) but I'm keeping that bar of soap handy! haha  My husband said I was insane, but that's nothing new  Tongue Out

  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #10
    RLS

    I call it the "jimmy legs" as in an episode of Seinfeld. Kramer had em. I too have had RLS a numerous times as this has been a side effect of the many different Chemo's I have been on. I have found two good solutions to RLS. Massive hydration, 2-3 gallons of H2O intake during waking hours and Attivan at night if needed.

    The hydration of up to 3 gallons of water per day is easy for me as my bilateral neck rads in 2010 killed my saliva glands, and my chemo is hard on my kidneys, but I've found this level of water intake solves so many issues we all have, and prevents numerous other issues that can complicate cancer.

    Hope this helps

    Mike

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #11
    luv4lacrosse said:

    RLS

    I call it the "jimmy legs" as in an episode of Seinfeld. Kramer had em. I too have had RLS a numerous times as this has been a side effect of the many different Chemo's I have been on. I have found two good solutions to RLS. Massive hydration, 2-3 gallons of H2O intake during waking hours and Attivan at night if needed.

    The hydration of up to 3 gallons of water per day is easy for me as my bilateral neck rads in 2010 killed my saliva glands, and my chemo is hard on my kidneys, but I've found this level of water intake solves so many issues we all have, and prevents numerous other issues that can complicate cancer.

    Hope this helps

    Mike

    Jimmy legs...

    hahahaha...that's what we call it too.  LOVE Seinfeld :)   I've started walking an hour each night and that seems to help.  I've also upped my water intake and started some fruit infused water and that seems to keep me good and hydrated.  

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #12
    TracyLynn72 said:

    Jimmy legs...

    hahahaha...that's what we call it too.  LOVE Seinfeld :)   I've started walking an hour each night and that seems to help.  I've also upped my water intake and started some fruit infused water and that seems to keep me good and hydrated.  

    You're Lucky

    That is great you found something that works.  My wife has had it all her life.  Got it from her Dad's side of the family and it explained why we took that nightcap every night.

    Through most of my wife's adult life, she was constantly told by all her doctors that it was in her head.  Talk about getting mad!  Then like magic, they come out with a medication for it called Requip.  So much for all those doctors!  Stick with the soap if it works.  No reason to take drugs unless it gets out of control.

     

    Tom

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