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Pain! It is controlling ALL my life!



  • I am back to post an update. After reading all the posts here and doing some research online as well as some serious thinking, I think I am going to try something.

    First I used my brother, hubby and other people/areas in my life as examples of why I wish I had more energy and could get away with less sleep.

    However I also would love to be able to do this for ME as well :)

    I still have dreams and goals I would love to achieve.

    Since I am fighting sleep or sleeping most of my days away I am not working towards any of my goals.

    So what I am thinking is to try to retrain my body little by little.

    Like for the next 2 days get up after 9 1/2 (instead of 10 ) hrs of sleep, then when I feel good then go 9 hrs of sleep. I am thinking I need to give this some real time to see IF it works and if it does where am I comfortable at.

    Does this make sense to try?

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I am not a good sleeper in the best of times. Post-op, I am getting 2-3 hours of sleep every 24 hours and that is with taking heavy duty sleeping pills ( Restoril 30 mg, sometimes I have to take 2) and often times take 4 mg Xanax. Is that pathetic or what?

    I guess the grass is always greener. Nothing would make me happier than to get 5-6 hours sleep per night, but, I don't think that will ever happen. The real bummer is that as you age you often get less hours sleep. Am I going to have to survive on 1 hour a day??? I may have to shoot myself!!! Just kidding
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  • I am with rascal, sleeping lucky to see 2 hours of it. I try and tell myself as you age you need less sleep. So if your getting the 9 hours of sleep that is awesome. I know the one thing your going to run into is no doctor can't say surgery won't make you worse, as that is a risk of all the surgeries. The question is what are the percentages, that go with it. Most of us hit the point and time that the pain is so intense the surgery and the shortfalls that might come with it are worth the risk.

    The one thing I truly know in life is I have to also function for me, as we also need to live the best quality of life we can live. Your worried about being up all day, but most of us need to lay down on and off throughout the day to deal with the pain more effectively. We also have to employ all those other things we have in our tool box to help with pain, be it Ice, heat, ten's units, aroma therapy, message therapy, or distraction. I know I can rely on the meds to do all the work nor is there such a state as pain free. It is a hard balance to achieve, and then on the best of days all of goes out the window and we just know tomorrow is another day to work on it again.
  • SavageSavage United StatesPosts: 7,385
    ...everything you are experiencing. My pain dictates EVERYTHING about my life, also.

    And sleep has been terrible for years now. Like at least once a week..no sleep at all. When I do sleep, usually it is 2 or 3 hours and that's it. A full 6-8 hrs sleep is so rare.

    Re' family and friends...so heartbreaking when they don't understand..& I would think..they would never expect that, or say that, or behave this way if they truly understood my life. I tried every which way to get through to them. Nothing..absolutely nothing touches their minds or hearts about what is happening to my body.

    I finally said, forget about it...and no longer have contact. It saddens me of course, but it was like a fake relationship..or one way..or..I dunno.
    But when I failed to be the person they expected..I was no use to them.
    My doing and suffering later only hurt me..physically...and now to feel rejection because I can't do for them...the hurt is on many levels.

    But since enough time has passed...I take care of me...and my plate being less full is a relief. My body thanks me.
    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

  • Hey there Good Morning:) I am exactly the same as you, If by chance I sleep all night without waking up for 8 hours I am done for the next day pain is terrible. If I get up every two hours to go to the bathroom get a drink just move then it takes me about 3-4 hours in the morning after I take my meds to get moving. I use to get up at 4 and be to work by five work 12 hours or more and then go to bed about 11.. Never thought I would miss those days.
    Guilt oh I know too well, not being able to do things that my kids want to do or my grandkids want to do depresses me.
    So I am thinking yep our pain controls us. It does me anyway. I hate waking up it is thw worst part of the day.
    I hope you are having a better day :)
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  • Long time no see. I think that's a great idea to have some "me" time and don't think it's selfish in any way. Getting yourself together getting up earlier bit by bit and going for a walk and eating well are important so you will have time for others.

    My family like husband is not supportive either and it gets it now I can't wash the floors or vacuum anymore so he has to do it, not as well as I would if I could but he does what needs to be done now. I'm tired of breaking my back even more just to please others. Sure friends are disappointed I can't get out like I used to so I get out by myself and go for walks by the lake and always wish my family could stop by. No one who hasn't had this kind of pain would really understand.

    I think it's a great plan to get up earlier but you need a good sleep also but I know what you mean my sleeping pill effects stay with me part of the day also so my rest is important. I have to go for a sleep study to find out why I'm so tired during the day, just another thing to do for myself. I hope your sleep schedule gets better and hope your brother gets some afternoon appointments. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I DO know the other side of this - For many yrs I could not sleep and am grateful that now with these different meds I am getting good rest. So yes I guess the grass is always greener ;)

    Last night I tried taking 1/2 of my night meds and it took forever for me to get to sleep and then I was up at least 10 times! Total hrs in bed ( not all sleeping but sleeping off and on ) until I felt "OK" enough to face the world was 13 hrs. NOT a good solution. So I will scrap that idea.

    So tonight I will take all my night meds and try what I posted before getting up a little sooner every few days.

    Something else I am going to try is taking my night meds earlier. They take about 2 to 3 hrs to "kick in" so I spend that time in bed watching TV and/or reading, then I am out for 9 to 10 hrs on top of the 2 to 3 hrs of laying in bed waiting to go to sleep. So I will start to take them earlier so hopefully when I go to bed I go to sleep sooner.

    I can FORCE myself to get out of bed but then I just sit around in a brain fog most of the day as I am so tired/drugged :(

    I know I am trying to gasp the golden spoon so to speak but seriously who can blame me for wanting to always be improving my quality of life :D

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • Hello Ms HD,

    Although we don't know each other,(nice to meet you),it sounds as if you are doing ALOT and not receiving MUCH help in return! You have to draw a line somewhere for your own health sake. I do know this is easier said than done. I am somewhat in your shoes. Still debating surgery and it is on hold for now due to new issues and more consults. I get little rest either as I have a husband who is older with his own health problems and we heat with wood, and live a rural lifestyle. I am lucky to get a few hours of sleep (3-4) a night and take 12 mg Ambien. I am fatigued already on arising many mornings. I am lucky to live in such a beautiful place but often can't enjoy it. My husband is good for taking me places but car rides just about kill me. Something like Cymbalta might help with your depression and some of the nerve pain. It is worth asking your doctor. I have just gone back on Cymbalta again in the hopes it will help some again. The good news is you are still fairly "early out" from your TKR. Things should/could get better on that note. I had a partial done in 2008 and it took me almost a full year to recover with all my other health issues. Try and be a little kinder to yourself, and maybe just maybe you will see some better days. Good Luck!

  • Thanks Gracie :)

    Well I am headed to bed very shortly :(

    I took a super hard fall this afternoon. It was just one of those things. My purse was sitting on the dinning room chair with its strap hanging down to almost the floor and when I went to grab something from the table and walked away all in one movement I went down! I hit my head and dented our frig, I drugged the dinning room chair and my stools down with me. I laid there and SCREAMED my fool head off for several minutes for my hubby who never did hear me. I landed mostly on my right knee and my right side of my back/hip area. I am black and blue and swollen. My right knee hurts so bad I said bad words and it keeps clicking and popping like it did when it was first put in. Hubby keeps telling me there is NO WAY it could have been knocked out of place or is loose - that is what it feels like to me.

    My back (right side) hurts too but not bad enough that I am wworried I did more damage to it.

    So I am going to go to bed with ice for rest of the day/night and see how it is in the AM.

    Who knows maybe this is a blessing and I will reset my sleep/awake hours by going to bed so early - trying to look on the bright side ;)

    PS: Oh I just remembered I have a lap top now, so I can go to bed AND still come back here later :D

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • Hang in there, Ms. HD!

    I'm in some pain tonight, but my little guy is spending the night at my place and he is a nice distraction!

    I hope you feel better and get the support you deserve......

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