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my pain is getting so bad i thought that i was on my way out !

strakerstraker Posts: 1,851
edited 06/11/2012 - 8:47 AM in Lower Back Pain
as many of you know i am getting to the fusion stage soon {thank god} but in the last few weeks i have been feeling so ill its worrying me ..last night i woke up with the pillow wet through and i was in so much pain more than normal .the thing is if i call 999 all they will do is say take your pain killers or take me to hospital and i would have to wait with all the drunks and then be told after 6 hours to go and see my doctor ..and he would say i can't do anything you will have to wait to see your surgeon .i a horrible time i just want to get this over and done with .still after all this time i cant believe how much pain a bad back give its unfortunate owner .i thought i was strong but after 4 years of constant severe pain and only 3 hours sleep a night i am so drained ..last nigh was the worst so far {1 Oct } is anyone else experiencing like this ??


  • I went through something similar and wound up having my husband rub liniment into my legs and thighs while I was laid out on the floor in agony due to my legs and glutes cramping and hurting horribly. My body got to the point where I was basically going into shock a few times from the pain it was trying to deal with. I would also go to the Physical Therapy Clinic and they would help break the pain cycle for a short time and allow me to regather some strength to make it through a few more hours.

    Is there any way you or your wife can call and let the surgeon's office know what you are going through?

    Ice and electrical stim were the only things to provide any real help in allowing me to catch my breath when this happened.

    I hope you can find some help.

  • over here we have done very well to be seen {as a follow up appointment} in just two weeks .i think that about 6 weeks ago some more damage happened to my back as i was unable to walk properly then only able to shuffle my feet and ever since that day the pain has been unbearable and the discography has just aggravated it ..kath and i are hoping that when we see the consultant on the 12 oct he will want me to come in for surgery very soon after .i am at the point now where i would go in NOW !! if you remember i was dithering as to weather to have surgery if it was offered? but as the pain has got to the cart stand it and all i can do is almost nothing now stage .i have no choice i need this operation and quick! if i had to live like this i honestly can say i would not be able to cope and i can't imagine what would happen to me ..it really has got SO bad ..i can't do stuff anymore ..i told kath that i feel like i am on the floor being kicked by thugs and once when i could have got up and sorted them out .i know just have to lay there and take a beating as i dont have it in me to fight back ..i know that may sound a bit defeatist but i am strong {was strong} but there's a limit to just how much the body can stand
  • as it'll help reduce any inflammation that might be going on in your back.

    Also, you've had a rough week or so, and I think this can be exacerbating your back pain. It's catch 22 - if you feel low/depressed, your back pain can go sky high, which makes you even more low/depressed. Are there any things that you enjoy that help you to relax, can you try them?

    I'm sorry you're in so much pain Tony, there's only so much medication you're allowed to take within every 24 hours and I know you're probably taking the maximum amount anyway. Do you have an electric heating pad (if ice doesn't work)? Are you able to get into a nice, hot, bubble bath? Even if you are, I suppose getting out would be difficult at the moment yeah?

    It's not long now till you go for your discogram results, but of course, this doesn't help you to cope with your pain levels now does it?

    I'm sorry I'm not much help, but I just wanted you to know that I'm at the end of the phone if you ever need to moan at someone ok?
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • i have every single pain reliving device known to man including one of the electrical heated massage things that you put on your chair and it goes up and down your back {got it on now} ice sometimes works for 5 mins but heat just make it worse .last night you could have fried an egg on my back it was that hot {this is a regular thing } but last night was exceptionally bad i honestly did think i am going to die ..i know it sounds mad but i felt that ill and the PAIN god the PAIN considering i had 100mg of oxycontin and 20mg of temazepam only 4 hours ago ..it felt like i have had nothing i took more when i came down {dont worry folks i have oked this with family doc i am allowed another 40mg of the instant version when woken by pain } anyway i have spent the day on my recliner with only short breaks to the loo .normally i can manage to do something even if it some light house work but there is not a chance of me doing a thin g at the moment ..sue i will ring you but not today pm or email me with best times to call you
  • I truly hate to hear this Tony. All the things I can think of to tell you you're already doing. My best thing for me when I am in your situationa, and yesterday was one of those days (today not much better), is sit in recliner with heating pad but you're already doing that. I will pray that you get some relief or the strength to deal with it. All the positive energy I can muster and all the prayers that can be offered are coming your way Tony.

    P.S. If you can stand it posting and reading here sometimes helps distract me. Remember you have friends and family that in your darkest hour are there to carry you through, let them.
  • Tony,

    That just bites what you have to go through. I do completely understand what your talking about the heat on your back. I get that where you wake and your back is absolutely on fire and it is hot to the touch, no different than someone who has a fever. I will have to try and go back to sleep on my side with no covers on my back but the rest of me covered. I try to keep my room temperature around 60 degrees. Everyone goes in my room wondering how I can sleep with the temp so low, but they don't understand that heat issue. Like you heat seems to make the nerve pain worse. So If I use heat on my leg the pain only gets worse. The only thing we have come up that somewhat helps is I get up every two hours to move around. Sure doesn't make for a good nights sleep but the pain doesn't make for a good nights sleep either. The other thing is I keep a frozen milk jug at the end of my bed so when the pain goes all the way to my foot and heats it up I put my feet up against the jug for some relief.

    The heat that I am referring to the surgeon told me it is inflammation. Unfortunately right now I am under a cervical fusion so I just have to grin and bear it, sense I can't use any anti-inflammatory meds. But maybe you can check into a anti-inflammatory med to see if it would help, I myself was using mobic and it did help to a degree.

    I do hope you get some relief today as it just has to be horrible waiting with no solid answers yet and no relief. Hopefully something will break this pain cycle for you. Take care.
  • when i asked "why am i in so much pain even after so many pain killers and i sleep on an electrically adjustable mega comfy bed "? he just pointed to my MRI scan that was on the screen and said .."just take a look at the mess your lower back is in .i am surprised that you can even walk!" then he explained that because i have lost intervertebral disc height through DDD and arthritis and BAD surgery the disc have collapsed on to each other and they are crushing each other .and every time your move it will hurt like a broken bone !! so i asked "why is the same thing happening to me when i am asleep!?" he went on to say that despite what many think the muscles in someone with back issue such as mine contract and then its as if i am moving ..hence the pain ...so i can't win lay down ...pain .sit up ..pain walk ..agony ! the only place i can get reasonably comedy is on the recliner with myself in the semi reclined position but even that starts to hurt after a while ..like i said at the start of this thread i am worried that its go so bad and i do mean BAD i have come through some hard time in my life both physical and mental but this is the hardest challenge yet .thanks again for your help and support
  • I am so sorry you are going through this. Gentle *HUG* I am sure you have thought of this, or tried it, but here goes. Have you tried a brace that would maybe change to loading on your back, and then maybe give you some relief? Or maybe that's a stupid suggestion, as maybe it would hurt more....

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Oh gosh, Tony, I am just counting the days for your surgery. I, in a minor way, know how you feel getting worse and worse as the surgery approaches- I don't know if our bodies let go a bit with the natural pain killers or what, but I am also having a time of it, but NOT like you!

    I just want them to fix you up! Hope Dr. X has his fusion mode ready.
  • >:D< Hiya Tony, long time since we spoke. I could cry for you what you are going through.I relate to alot of what you have said.Keep Posting....Gentle, Gentle >:D< >:D< >:D<

    Angie x :H
  • thanks for you post i have sent you a PM
  • I can't think of anything to add that you aren't already trying. Just wanted to say how sorry I am to see a fellow spiney suffering so much. I will keep you in my thoughts and prayers and hope that this horrible pain will pass for you very soon. :-)
  • to all that's posted on this thread you are all very kind caring people and i genuinely value your input and constant care .i dont know what i would do it web sites like this were not around .because other normal people dont understand do they ..
  • to all that's posted on this thread you are all very kind caring people and i genuinely value your input and constant care .i dont know what i would do it web sites like this were not around .because other normal people dont understand do they ..
  • I can't understand why your surgeon isn't making your surgery a priority. Given your situation, it should be a matter of days, not week or months.

    Tony, I know that you are responsible about your meds. I do wonder if your meds are causing some type of adverse reaction. In general, my meds make me hot all of the time and I sweat profusely with any exertion. For you, I would imagine that just walking or brushing your teeth would be major ordeals. Even sleeping can be very traumatic.

    As TamTam mentioned, is your room temperature low enough for you? I often fight with my wife over the thermostat. I keep turning it down (colder) and she keeps turning it up. I have had many nights where I had to get out of bed because I was so hot. No one else in my family was hot.

    Regarding ice, I was always told 20 minutes on, 20 minutes off. Even if you get 5 minutes of relief, I would think that it would be worth having a rotation of flexible ice packs so that you can at least get a little bit of relief each hour.

    Tony, I am so sorry that you are suffering like this. Again, I think your doctor needs to make your surgery a priority.

    I guess the last thing that I want to say is that your subject line really scared me. I would hope that if you ever really do feel like your body is giving out on you and that you think you are in immminent and grave danger, that you would go to the Emergency Room. Please reconsider it.

    My prayers are with you for a more timely surgery!

  • over here two weeks to see the consultant is very quick you get that kind of treatment if you have cancer .normally i would have to wait over 12 weeks just to see the consultant .i could imagine that i will be in hospital within 8 weeks and again over here that's quick {i just hope things get sorted out before the government dose any more cuts they have already cancelled hip operations and all cosmetic surgery .so back surgery that cost around 25/30 thousand pounds may also be on the hit list !
  • I see that things have taken a turn for the worse(if that's possible).
    I'm struggling aswell but thankfully not as intense as you.
    It seems to me that you need to get your meds adjusted.
    Last year I was in what seems like the same sort of pain range and reluctantly agreed to go onto the morphine.It worked and although I knew all the risks regarding addiction/side effects etc it was all I could do and I consolled myself with the fact that it was only 'short term' until my op'.
    I know you said you were on quite high doses of various things cos of the pain but is it worth looking into the hardcore stuff just short term?

    You know where I am if you want a chat so just sleep when you can and try and be positive if you can.

    Cheers mate.
  • You are just going through so much it is unbelievable. When I sit here and possibly answer a post with my problems and then I read your posts I feel like a whimp. I am not saying that to make you feel bad in anyway. You know the saying "there is always someone in worse shape than yourself". Well you are most certainly that somebody. I wish I could give you a tip on how to bring comfort to your painful body but you have done or tried everything I could even mention. I too can only handle ice but according to my therapists I leave it on way too long. I have very little feeling in legs and feet so I don't really feel the cold. It just helps the ungodly burning for a short time. I know you are in no condition to even consider showers or baths and given the fact that "hot" hurts you that would be a waste of time. I have only two things I can give you and that is to tell you I care that you are in such pain and that I will pray that God will give you some comfort. For many two weeks seems like no biggie but for you I know it seems like a lifetime. Did I understand your post correctly that you will be having a consult in two weeks and then surgery to correct will be sometime after that? I hope you and Kath take every bit of strength you have when you go for this consult and try to get your surgery moved up. I know as far as pain meds go you are possibly at a maximum dose. I am not sure but do they have you only any type of relaxant. Either a muscle relaxant or nerve pill. It would seem you need something that would work along with the pain meds to calm your muscles and nerves. If you are already on these meds perhaps there is room to increase those until surgery. Just a suggestion anything that will get you through the interim. Don't feel bad about being in your recliner 24/7 and not doing anything more than making yourself comfortable. I know that is hard for you to do. If you must remain immobile for a period of time just remember to move about daily so you do not get any blood clots. I always worry as I am in my recliner most of the time. I know it is extremely hard to distract yourself when you are suffering so. Even getting engrossed in a television program is a difficult task. How I wish I had any words of wisdom for you as I worry about you so. You have been the kindest and most supportive person to me even when you have been in so much pain you some how managed to help me. It's so hard to hear you are going through so much and wish I could help you. Please know I give you all the support and caring wishes for both you and Kath. I pray these two weeks will somehow go by quickly. Tony, if you were to go to the hospital is there any way they would have to move up the surgery and an emergency? Because that is exactly what it is and you need to be hospitalized to correct this and to control your pain. Just a thought.
    I'm sending you and Kath lots of Hugz. If you need anything or just someone to listen always feel free to PM me.
  • I am new to this, I thought it would be smart to find other "night crawlers" like myself... literally right? I am not going to give you any advice because I know you have tried everything and it just doesn't work. I hope the best for you and will pray that your surgery makes you not only feel good but like superman! Hope to hear only wonderful things in the not so far future from you!
  • first scott {hi mate} my doctor recently had his 4753 kicked about prescribing a none cancer patient high levels of narcotics and there for he now has to give me a my meds every two weeks and he has lowered them down a little but has tried to give me the max for a none terminal patient he has also doubled my diazepam to hopefully compensate {it wasn't} i am good on oxycontin and oxynorm .i am saving the morphine for post op !and hoping that i will be able to come down and even off narcotic and on to a none narcotic pain killer {one can dream}
    yes i will be seeing the consultant on the 12 oct {this is very quick over here } SUED AND SCOTT will vouch for that ..i will get my discography results and hopefully as we live 30 miles away he will send me for my pre op assessment {bloods 12 lead ECG chest x ray etc.then if they come back ok i am hoping to be in hospital within 6/8 weeks ..unfortunately there are many problems over here at the moment with the government cutting back on everything including operation and drugs {my area alone had stopped hip replacement eye operation and all cosmetic surgery } with back surgery being very expensive i bet that will be soon to go and to make things worse i am in another medical area {geographically} and my PCT will have to pay another PCT for the operation and its yet to be approved ..i could imagine that because there is no other surgeon in my area that can do the kind of surgery that's required on my the PCT will have no choice .and to make things worse our 80 year old slate roof is now in need of replacing as we have water leaking in and running down the wall !! another 4 thousand pounds ..thats life folks
  • Sigh, that is life! At least your operation isn't costing you anything. Over here, all of these appointments and medications would be costing you copays, and you'd have to pay 10% of your surgery cost!

    So it really is a balance.

    Still pulling for ya. I am on morphine and don't find it particularly helpful. Oxy is actually stronger.

    Wishing you a decent night's sleep.
  • oh Tony, I am so sorry...I hate to see this post about you. I know how you feel when the pain is so bad, youo feel like you will pass out, or don't even care if you make it thru the night. I always just focus on my beautiful children when I have one of those pain flairs...you have to focus yourself on something or someone (Kath) you love who needs you to be here. I sure do hope this huge surgery will give you a whole bunch of relief buddy...I really do. You so deserve to feel better. I know your spine is a "bloody" mess...but I just hope they can make it much better and mend a good part of it in your lower back.

    Is your recliner in your family room or bedroom? Since the reclined position is also the only position I can get relief, we are looking for a recliner, but we are going to put it in our bedroom....right beside our bed, so that when I need to get up in the night and can;t sleep, I can slip into the recliner and watch a little tv...but at least we (me and hubby) will still be "together". He doesn't want it placed it the family room b/c he wants to be close to me. I really hate to be that older couple that sleeps apart...it's just too soon for that!

    Anyway...just do what you can to keep comfy...as best you can bud and keep your eyes focused on your love and the fact that your surgery will be soon.

    Take care Tony
  • mr recliner is down stairs in the main living room and i have all my comforts around me like fan /42 inch plasma tv and downstairs loo! .all i am waiting for now is the next appointment ..that's what its like when you are in so much pain..there a limit to how normal you can be when you are so much pain /like i said i am literally on the floor and carnt get up and fight back ..so i am lay here taking a metaphorical beating...not long now only 8 more days to see my consultant ..i am hoping that he will take me in soon after that .i dont think that i have ever been in so much pain and unable to do anything about it .roll on fusion
  • I'm so sorry to hear this, Tony. I hope you can gather the psychological fortutide to see you through to the fusion! Need to go find your post about the pain from your disco...

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • I don't know how you endure so much pain each day and I'm sorry that you are having a bad time. There's got to be something your specialist can do for you while you are contemplating surgery. Whatever procedure you wind up having, I pray it gives you respite from this pain. Hugs, Meydey
  • I'm just wondering - can Kath vacuum around you? Or can you roll over so that she can vacuum under you? LOL

    Sorry, just wanted to inject a little early morning humor. I hope you're feeling better. My recliner is in my family room too and it was only supposed to stay there until after I recovered from my ACDF in Oct. 08, but alas it's still there and I don't see it going anywhere any time soon.

    By the way, thank you for the beautiful story you sent me. It really touched my heart.

    Take care, my friend and I hope the days ahead find you feeling at least a little better.

  • i was feeling a little sorry for myself that night and i am also worried{and looking forward to it in a strange way ..i just hope that the back ache will go } about the operation and and and !! i am not thinking straight at the moment .so i apologise if i went on a little
  • that you may sound somewhat frantic and desperate at times considering the amount of pain you are dealing with and being frustrated by all the waiting time. You know we are all right here for you 100% and praying that your upcoming surgery gives you much relief. No one deserves to be going through the agony that you are dealing with. I give you alot of credit as you are very courageous. We just all have a breaking point at one time or another and it was your time to vent a little. Personally I think I would be pulling my hair our if I were going through your situation. We are all here for you so if you need to let out how you feel by all means this is the right place to share it with us.
    I hope you have as comfortable day as humanly possibly given your medical situation.
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