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Sleeping problems seem to be getting worse!!

jellyhalljjellyhall Posts: 4,373
edited 06/11/2012 - 8:55 AM in Sleep Problems
Ever since my lumbar fusion almost 18 months ago, I have had very broken sleep. I sleep for a couple of hours, then wake and need to re-position myself or get up and take a walk before going back to bed to try and get comfortable again.

For the last year, in addition to my back aching, I have also been having awful aching arms that I just can't seem to get comfortable. I believe that this is due to cervical spondylosis causing pressure on my nerve roots and spinal cord. I have aching arms during the day too, but at night it troubles me far worse. I also get the usual tingling, occassional numbness and pains in my hands.

My legs and feet have now joined in! Some nights, I can't get to sleep at all due to pain and aching all over. If I get up and walk, I feel much better, but I want to sleep!!

My legs now just feel so uncomfortable. I think what I am suffering with is like Restless Leg Syndrome. It is driving me crazy and makes me feel like crying with frustration.

I also get a strange stiffening / spasming in my legs and feet mostly, but also around my abdomen. This happens as I am starting to move as I wake in the early morning, but also if I have been sitting for a long time (over an hour).

Has anyone got any ideas of what I can do to help please?

I get up in the night, walk around the house, do some leg stretches. I also find that my legs feel very hot, so I don't have any covers on and just have a sheet handy in case I start to get cold. I have tried turning round in the bed and putting my feet up on the wall to try to get the blood to drain out. (I know, sounds crazy but that is what my instinct tells me to do.) While we were on holiday, I did find that taking a cool shower helped for a while, but I can't keep doing that during the night!!

I would really value any ideas!



  • Jelly,

    I can certainly understand what you are saying. I am not sure how you are in the day time, but I need to move around frequently in the day. If i am sitting i need to get up and move or change positions. If I am standing I need to sit down. With that said the same thing goes for night time, that I have to move frequently. I can find a comfortable position to fall asleep in, but it last for about 2 hours, at the max and then need to get up move around, and then go back to sleep. Sometimes I might be up for a hour in between and sometimes maybe a short 15 minutes or so.

    One thing that does help is I have my meds spaced so I get one muscle relaxer in the middle of the night. Taking it at bed time doesn't help as I still need to get up when it wears off. So at least, I have it at 2am to help me go back to sleep as soon as it kicks in. I also have several pillows I use as I need to change the height out through the night.

    My doctors have all told me to make sure I don't hold anyone position for a very long time, so it goes without saying that it is going to happen in the night. In the event I sleep for 4 hours straight the pain is so extreme it takes twice as long to feel like a human once I wake up. So I am not sure with your issues your going to find something to help. Changing positions is just part of it, I think.
  • dilaurodilauro ConnecticutPosts: 9,833
    keeping active during the day and spacing medications, especially muscle relaxers can help.

    For years, I was suffering , what we all believed was Restless Leg Syndrome. I was put on medication, REQUIP, that immediately controlled that.

    Before that, I was bothered most while sitting at night or in bed. I was start to hit mg legs to 'wake' them up, I would get out of bed walk around. I would feel better, but then when I got back into bed, it would start over again.

    After a while, I started having reactions to the REQUIP. I broke out in rashes all over my body. I spent almost 9 months with rashes, going to the dermatologist , etc. All along it was the requip.

    Now, looking back, I might have had some bouts of RLS, but now we know its the Spinal Stenosis that is causing my problems. Not much I can do about that at night, except for the right amount of activity during the day, and for now, the only thing that controls it in the middle of the night is my Opana.

    So for me, its trying to keep DDD and Stenosis controllable. Not a very easy task.

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com

  • I had thought that it might be Restless Leg Syndrome, but am very interested, Ron, to hear that it could be caused by spinal stenosis.
    How did you find out that was the culprit?

    I did have severe stenosis in my lumbar spine, but I had hoped that had been sorted with the decompression. However, I know that I have a small spinal canal and that I have osteophytes in my neck and thoracic spine, so I have probably got them in my lumbar spine too (in the levels that weren't decompressed!).

    I am not taking any muscle relaxers, so perhaps I could try them if I get really desperate. I tend to have allergic reactions to things, so prefer not to take more medication that is absolutely necessary. I am willing to try any ideas to help though.

    The changing positions (sometimes with a walk inbetween) generally helps a lot, but lately I am tossing and turning every 30 seconds or so, because I just can't get comfortable.

    My poor husband!!! I have started to move into our spare bed, but tend to end up downstairs pacing up and down. While I am doing that, I feel much better! Trouble is, during the night, I want to sleep. I)
  • Hi Jellyhall sorry to here your condition is getting worse, i have always had problems sleeping and still do , chat to your doc about your meds, i just have because i only get 2nights sleep out of 7 and like u i have tryed every thing and now he is upping my meds . Take care
  • Jelly,

    Sorry to hear about your sleeping issues. I had them too, but I found for me, it was due to my sleeping position. Have you tried elevating your upper body and legs?

    After I raised my legs a bit, and slightly elevated my shoulders/head, I sleep better. Still not like my 'normal' days, but more recuperative. I think sleeping like this put my spine in a more 'zero' stress environment.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Jelly I too have the same problems. I have had problems with my hands for a long time, but every night for the last 4 weeks or so my left leg from my knee to my hip goes crazy and starts hurting like crazy and trying to go numb, my right hand go comepletely numb, but the worst is the terrible spasms I get in my rib cage/abdomen area. I realized a few weeks ago that it was this waking me up everynight.

    I started changing my main med times also. It helps a little. I take everything every 8 hours and the ambien right at bed time (if I am lucky I have a half dose of zanaflex left over and take that too). I try to get a dose between 2-3 am (I sleep a little later & better) and I am not as groggy as I was taking it before (11 pm and 7am).

    I will be sure to tell my PM and NS about my changes. Maybe there is something they can figure out.

    Incidently we rented a cabin last weekend for 3 nights and I had the pleasure of sleeping on a different mattress. OMG I woke up is excrutiating pain daily and my body hurt so bad all day. I realize the value of the way I have my bed set up now. The 4" of memory foam ontop of my firm bed make all the difference for me.

    Feel Better,

  • dilaurodilauro ConnecticutPosts: 9,833
    There was a thread:
    that talked about adjustable beds. We have one and it has made a world of difference.


    Why the doctors ruled out RLS was because of the way I first responded to the medication and then when it was removed, there were not many changes. A follow on MRI just showed more narrowing of my spinal column, starting in the cervical area and narrowest at the lowest lumbar region.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com

  • I am going to have EMG and Nerve Conduction Tests done on Saturday, and have read that they are sometimes done to diagnose Restless Leg Syndrome, so I am hoping that these tests will show what on earth is going on with me.

    I am experiencing so many neurological symptoms and pains, and with the DDD at so many levels in my spine, it is very hard to know what is causing what.

    I'll let you know what we find out. I am hoping to get the results before my appointment in October, but waiting is part of being in the UK.

  • I sleep with a pillow under my knees when lying on my back, and have it between my knees when on my side.

    Because of my neck problems, I only have one pillow, but also have one beside me to stop me rolling onto my front.

    I am thinking of getting a contoured cervical pillow. I am 'the' original pillow / cushion lady. My poor husband - there is hardly room for him in the bed!

  • SavageSavage United StatesPosts: 5,427
    At first friends..but even docs didn't elieve the severity of it. I was near the end of my rope.
    Pain doc did a sleep study and found... something.. not RLS..and he medicated me for it.
    It helped some and for awhile...then he needed to double it. Now I am at one or two nights a week of absolutely no sleep.
    It's funny not to feel sleepy either and no naps during the day. Thank God for TV.

    Just crazy making...more difficulty with thoughts and I try not to make major decisions, but I do.
    No drastic consequenses, but that is when I'll be least polite. No sleep...lots of pain..fall more often...just crazy making.

    Hope you find the help you need.
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • i really feel for you on this one ..yet again i am up at 4.30 with back/leg hip/foot ache ..i have tried everything from TENS /drugs/ a hot shower/ ice
    even tried walking the dog in agony ..bad idea .i can't advice you as i have given out the advice i have tried myself ..maybe it works for some but not me .it ..one of those things ..we poor b..stds have to live with !! after nearly 6 years of no real night sleep .i try to grab sleep as and when i can .maybe you can do the same .some sleep is better then none .even though i know you would like to go to bed at 10/11 pm and sleep 8 hours ..would that be nice or what! .sorry you are going through this and i am sorry that i can't help ..but just to let you know your not on your own
    tony UK}
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Not getting enuf sleep definitely exacerbates the pain.

    I am a diagnosed insomniac due to fibromayalgia as well and am lucky to get approximately 4 hours of sleep most nights. That is taking 10 mg of Ambien. With this radiculopathy and all else, I sometimes get much less.

    I take very few narcotics still but do take a norco when I wake up early in the morning each morning. Then I rely on only asprin, tylenol and another norco before bedtime. I also take Curamin.

    Unfortunately, the neck, radiculopathy and leg and shoulder pain is getting much worse again and am looking to surgery soon. Need another MRI of my back again first.


  • Thanks for you understanding :-)

    My restless legs seems to have improved somewhat.

    About a week ago, I purchased a memory foam contoured neck pillow. Wow! I have had some much improved night's sleep. It has really made a difference. I am still waking up and need to take a short walk, but I am sleeping longer in between waking and am only waking a couple of times during the night.

    I am so glad that I decided to give it a try. It has been worth every penny.

    Wishing you both an improved night's sleep tonight.
    I) I)

  • Glad to hear you are doing better.

    Sometimes it is just a little thing that can help so much.

  • i have tempur millenium queen and its amazingly comfy .thankfully my neck is fine i also have a memory foam /sprung bed but after 2 hours pain always wakes me .tonight i have been out in my car just driving around listing to my favorite CD dark side of the moon by pink floyd ..anyway normally i just come down and get on my recliner but tonight i decided to go for a drive .so sick of not being able to keep asleep no advice this time just killing some time ! take care folk and wishing you all a better night's sleep tonight
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014

  • Sorry to think of you driving round unable to sleep. :-(

    Hope that you will have a better night tonight.

    I've had a very busy day with family here for a barbeque and have been in the garden most of the day. Even though it is dark now, it is still very warm. Hoping that all the fresh air and busyness will make me sleep.

    Sleep tight I) I) I)

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