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Are the moments after waking up when you feel the worst pain?

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    Are the moments after waking up when you feel the worst pain?

    The suicidal, terrible, paralyzing pain that many speak about happens to me for about an hour after I wake up. Because of this I fight to stay awake during the day avoiding a nap no matter how badly I need them. I'm lucky that the pain goes from a 12 to a 7 most days. But man it'd be nice to wake up to a new day without agony. I ball up, squint my eyes and don't move for about an hour after waking. It keeps me from going back to work and playing rugby. Sure I could wad up earlier but I'd need a nap later. The pain meds make me drowsy. I know I'd be far more independent right now if it wasn't for the pain. Kinda hard to dress and transfer when you feel like battery acid is seeping into your skin
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    #2
    ECU

    You said:

    battery acid is seeping into your skin

    As you may probably know, there actually is acid being made there. It is fatty acid at the nerve synapses, oxidized linoleic acid metabolites, or OLAM. These are related to arachidonic acid, which is what all the anti oxidant foods and supplements are supposed to be fighting in our bodies. The acids are sometimes called free radicals. Patrick Wall *(editor of the Textbook of Pain and founder of Painonline) said the most common descriptor of dysesthesia is "like acid under my skin".

    Once again, you said the magic words for dysesthetic burning. In most, it can also be evoked by occlusive light touch or a blast of cold air from a car air conditioner.


    Sounds like your skin is getting hypersensitized from contact with the bedclothing. You are dropping down from evoked burning to spontaneous burning, after an hour or so. I have had some luck at night using satin sheets and extending my lower legs and feet beyond the end of the bed. In winter, I use a stiff cotton quilt that I can tent above my feet and lower legs. I would use silk sheets if I could find them.
    Last edited by dejerine; 7 May 2012, 3:12 AM.

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      #3
      Maybe I'm not wording it right. There is no doubt the pain is coming from the inside. I can rub my skin all day and it has no effect. The pain also feels like I'm being stabbed, dragged behind a car, shards of glass. I could go on. But when I say skin I know it's really an internal thing. Does that make sense

      But I'd never thought about what you're saying before
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        #4
        My husband's wakes him during the night. He stays awake later and later to avoid it and ends up sleeping much of the next day.
        I rub his skin when he asks, but does not give much relief.
        Sorry to hear this evil pain has invaded your life.

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          #5
          Originally posted by LindaT View Post
          My husband's wakes him during the night. He stays awake later and later to avoid it and ends up sleeping much of the next day.
          I rub his skin when he asks, but does not give much relief.
          Sorry to hear this evil pain has invaded your life.
          So sorry Rachelle I have my worst pain in the morning as well Unfortunately activity makes mine less so I have to just get up and get at it. It all sucks and I have no real solutions for you Sorry

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            #6
            Originally posted by ECUrach85 View Post
            Maybe I'm not wording it right. There is no doubt the pain is coming from the inside. I can rub my skin all day and it has no effect. The pain also feels like I'm being stabbed, dragged behind a car, shards of glass. I could go on. But when I say skin I know it's really an internal thing. Does that make sense

            But I'd never thought about what you're saying before

            What neuropathic pain meds are you taking?

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              #7
              Morning has always been toughest time here too. When working FT I did find after pushing through initial wall of pain the distractions and activity usually gave some relief ... getting there was especially tough when tired and stressed.

              Wishing you the best.

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                #8
                Thanks everyone. I was on neurontin 900mg 3x a day but decided to see if lessening would make a difference. I'm now on 1500mg in a day and the pain is no different. I want to have a kid so badly so it's kinda like a trial run to get off the meds. They clearly aren't helping anyways

                But it's not just morning. If I accidenly dose off for 10 minutes I wake up with crazy pain. Y is that. It feels like I'm the only one with that issue
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                  #9
                  Have you tried Lyrica? My husband takes 150 3X a day and does give some relief.
                  He notices right away if we are late on the dose.

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                    #10
                    I have very little nerve pain, so I can't relate that well. But my advice is to try to work through it. I don't want to be that guy who just says "cowgirl up" but personally that's what I've had to do in the past.
                    Dealing with school this past year I wasn't as physically active as I would have liked, also our rugby team lost our mid-week gym time and we were down to one practice a week. Not having time to weight train I was getting really spastic with some of that "battery acid" feeling throughout my forearms and hands and the "ass on fire" feeling was creeping on me because of the time spent immobile. As time went by I wanted to do less and less, it began affecting me psychologically. Finally I began fighting through it, pushing my wheelchair vigorously on my lunch-hour, forcing myself to the gym after school if only for 20-30 minutes. In a short time I began to feel better, the mental state has a big effect. I sometimes realize the feeling in my forearms is still there but I try to ignore it.

                    Waking in the morning unable to move must have a devastating effect on the psyche. But I would give physical activity a try once out of bed and feeling better. You had mentioned you were struggling on your handcycle, maybe check into a cycle trainer - a "treadmill" for it that you can dial in the resistance. That way you can exercise in the safety of your home at your own pace building up your stamina. I know when I got out of rehab I had little reason to get out of bed, the more I slept the sleepier I was. Now after training alot this spring I find I sleep well but have plenty of energy throughout the day. The forearms still burn, the hands ache when I wake up but I find the more I do the easier it gets.

                    The other thing that might help is fight to get to your rugby practices, spending time with your rugby buddies even if not doing a whole lot while there. Get a ball in your hands and pass with somebody that has similiar function as yourself. I find the time spent around my peers has a very positive effect because you connect with people that can relate to what you're going through each and every day.

                    Please no one take this personal, this is the way I have worked through minor pain. But truthfully the more I do the better I feel. I know this is not the case for everyone, and I do feel for you guys.

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                      #11
                      Originally posted by ECUrach85 View Post
                      Thanks everyone. I was on neurontin 900mg 3x a day but decided to see if lessening would make a difference. I'm now on 1500mg in a day and the pain is no different. I want to have a kid so badly so it's kinda like a trial run to get off the meds. They clearly aren't helping anyways

                      But it's not just morning. If I accidenly dose off for 10 minutes I wake up with crazy pain. Y is that. It feels like I'm the only one with that issue
                      So your max was 2700mg/day. A lot of people have had to go higher for it to help with the neuropathic pain. Or perhaps do as Linda suggested and try Lyrica. I just wouldn't totally write off Neurontin unless you've tried (and can tolerate) a higher dose. Keep in mind that the side-effects are usually the worst in the first few weeks, then moderate, at least from the descriptions I've heard from other people using the med.

                      The descriptions you give of the pain are right in line with what I've heard a number of times from other people with central pain, so know that you're not alone. I compiled a list of the descriptions I received from several people, but the "battery acid" burning sensation is one I've heard a number of times over the years.
                      http://painonline.org/description.htm

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                        #12
                        Originally posted by ECUrach85 View Post
                        Thanks everyone. I was on neurontin 900mg 3x a day but decided to see if lessening would make a difference. I'm now on 1500mg in a day and the pain is no different. I want to have a kid so badly so it's kinda like a trial run to get off the meds. They clearly aren't helping anyways

                        But it's not just morning. If I accidenly dose off for 10 minutes I wake up with crazy pain. Y is that. It feels like I'm the only one with that issue
                        Given that the pain is in the mornings and after you wake from naps, I'm wondering if the pain may be associated with being still and remaining in certain positions for periods of time, which may be adding to body stiffness, muscle tightness, pain from persistent pressure on certain areas, etc.

                        As you start weaning off your meds (which you should definitely do in consult with your doc), I think it wouldn't hurt to incorporate a daily regimen of stretching and exercises that might help relax your body and get your circulation going in the morning, in addition to any routine ROM you might already be doing. You can start this off in bed, before getting dressed, so you won't be in pain as much (hopefully!), and then complete it while in your chair.

                        If you can get off the meds, that would be great, especially if you don't feel they work for you. If the pain persists, you can always try other meds to see if they might help, but I think it's good to seek non-medicated remedies as well, including simple things like increasing movement and exercise, as they've definitely shown to minimize pain. But whatever you do, be careful not to just increase meds and doses higher and higher hoping to relieve pain. That can get dangerous, so be mindful. It's just something you'll have to work through to see what works best for you.

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                          #13
                          I actually set my alarm for an hour before I need to get up, and take pain meds then, turn and go back to sleep for an hour. Sometimes that helps. For me, moving around, getting dressed and in the chair generally makes is a lot worse for a while, then it gets better. Kind of goes w/ Chick's thought that it is being still for too long that sets me off. But it really slows me down in the morning. (To the point, that if I have to be bright and alert first thing in the am .... I am tempted just to not go to bed, lol).
                          T7-8 since Feb 2005

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                            #14
                            Originally posted by ECUrach85 View Post
                            Maybe I'm not wording it right. There is no doubt the pain is coming from the inside. I can rub my skin all day and it has no effect. The pain also feels like I'm being stabbed, dragged behind a car, shards of glass. I could go on. But when I say skin I know it's really an internal thing. Does that make sense

                            But I'd never thought about what you're saying before
                            It makes perfect sense.

                            All last summer, I could lay in bed with a comforter on top and count the revolutions of the ceiling fan as it burned its way through my legs. Some mornings I would wake up in the fetal position. Some nights I would just stay up all night long and wouldn't sleep at all. I was told it was in my head. You see I walk with AFO's and a cane. I have forward movement in my knees. I was told many times that "I didn't know pain" This kind of pain is maddening. Your descriptions are spot on.

                            You had storms down your way the last few nights? Barometric pressure changes always make these feelings more intense.

                            You need to read more posts by Dejerine and find a good pain doctor if you don't already have one. The verdict is still out on mine at Chapel Hill. Duke University is supposedly ranked one of top for chronic pain treatment and studies not spinal cord injuries. I am thinking of making the switch. I have no other advice other than I truly feel and understand although I don't feel YOUR pain. I have central pain syndrome too. I hope you find relief because it will take over your life if you let it.

                            I can also tell you that mine has been helped with exercise but it is hindered by anxiety from the pain. Its all connected. You need to find some good caring doctors Rachel who can help you through this.
                            T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                            My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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                              #15
                              Mornings/naps are the worst for me as well. It gets into a viscous cycle, your mind is trained to avoid things that hurt (put hand on stove, stove hot, don't put hand on stove). So when sleeping hurts I think it is natural to start to avoid sleeping. I know I do. I wish I had an answer, and if you find one please share, but you aren't the only one. I put my my pain meds on my bedstand before I go to sleep with a bottle of water. When I wake up, I take them, then try and do some gentle streching/ROM for a half hour till they kick in enough for me to function.

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