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Momine
Momine Member Posts: 7,859
edited June 2014 in Lymphedema

All you ladies were immensely helpful and supportive last year when I was dealing with LE. I still have some issues once in a while, but they are truly minor and I am thankful for that. So thank you again for all the help.

I was wondering about something and thought you might know. After my surgery, I was told not to sleep on the side where I had the lymph nodes out, so I didn't. I was also told to keep the arm elevated at night.

It took me a LONG time to be able to sleep without fear of turning on my right side. I would wake up several times at night to check myself basically. Now I am sort of used to it, but it is a drag.

Keeping the arm elevated is worse than a drag. It makes my shoulder hurt and every time I move (which is often) I have to rearrange a pile of pillows. If I lie on my side (the left), I sort of balance the arm on my hip with a pillow, but it is not comfortable. Also, eventually I DO fall fast asleep (although a lot of time I am cat-napping, due to trying to keep all this arm business straight), and I doubt the arm stays elevated when I am really sleeping.

Have you all been given the same instructions? If so, any tips for making this easier?

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  • Estel
    Estel Member Posts: 3,353
    edited July 2013

    Momine - Yes, I was given the same instructions. I'm bilateral though ...and...I don't do well following that instruction. :/



    The best way for me ... Is two long, king size pillows by my sides where I can elevate my arm...tuck them way in ... so if you roll over...the pillow is right there. I'm not married, though, so sleep by myself...not sure how that would work with someone else in the bed. Since my whole bc journey started ... I haven't slept well. I wake up every time I turn over. :(

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Hi Momine. Who was it that told you that? Surgeon? LEist? and how long did they say? I'm going by your stats in your sig saying you had surgery way back in '11!. If this is what your referring to, then I would say unless youre having a flare with LE or some issue then it should be just fine to sleep on 'that' side.  Be kind to yourself and when the going is good you need to capitilize on that status and SLEEEEEP!!! Sleep is very important so they say.

    I wasn't told to not sleep on that side where it meant indefinitely. Meantime, YES I know how hard it is to sleep even when youre comfortable let alone not when youre not! Right now Im having another flare (dang!) and Im having to wrap, prop up my arm up on a nice soft pillow, and Im not sleeping on it.  I find if you raise it too high, or have it too straight or too low it WILL be uncomfy. Its one of those things, when you get it just right it's doable but sometimes it takes ages to get that right combination.

    If your LE side is not bothering you now then go for it and I hope you have a lovely peaceful and restful sleep tonite!

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  • Momine
    Momine Member Posts: 7,859
    edited July 2013

    Dawne, thanks, yes, I am also bilateral, but only had the sentinel out on the left, and they told me not to worry about that side. For  a while I did have issues on both sides (at the end of chemo) and that drove me round the bend. You have my sympathy.

    Musical, I was told this by surgeon, PT and onc. I was never told that I would be able to stop at some point. I asked the onc 2 weeks ago, and he was more or less telling me "forever." It is strange that instructions differ on this. It makes it so difficult to know what is right and what is wrong.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2013

    Momine, hi! Really glad to hear you're doing so well!Cool

    It might be time to experiment a bit, since you know what to look for and what to do if things look like they might be getting out of hand. But I have to say I can't sleep on either side without LE problems, so I've had to learn to sleep on my back. I don't elevate my arms other than putting my hands on my body. I've heard that elevating the head of the bed slightly will also help, but haven't tried it.

    If you sleep on your side, at least don't sleep on your arm--keep it out from under you. Do you have night garments? They do allow a lot more freedom, so if not, you might want to look into that.

    Here are some suggested sleeping positions to elevate your arm(s)--they're on the StepUp-SpeakOut RIBP page, but they help visualize some possibilities for LE as well.
    http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#sleeping positions

    Interesting subject--do let us know what you discover!

    Hugs,
    Binney

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  • Momine
    Momine Member Posts: 7,859
    edited July 2013

    Thanks for weighing in, Binney. I will try a few things and see what i can get away with.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    WOW ...  if this actually is an issue well I was never told about it. Im seeing my LEist tomorrow and Im gonna bring it up. If I stop and think about it, it might very well cause issues if you actually sleep on your LE arm.... so I agree as long as you dont sleep ON your arm, but have it out from under you....thats what I had in mind as thats what I (try to) do. (Who knows what we do while we're asleep! )

    I guess we're all different and for some of us to sleep on our backs all the time can cause other issues.  For those of us with Bi-lateral mx ...heres a goer.... Oh isn't it nice to sleep on tummy as long as we don't get a crink in the neck. LOL I remember a table somewhere where the patient lay on it and it had a breathing hole and padded area for the face.

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