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Thread: I'm tired of this #$%&-ing pain!!!!

  1. #781
    2:30am - awaken out of sleep tp breath taking electric shocks every 30 seconds of the left foot - coming from the sole of the foot. It lasts for 10 seconds of breath taking screaming pain. Then wait for the next shock. Go under the assumption that this is a UTI presentation although I don't know for sure. Start Cipro empirically. Start taking meds to take the edge off everything but the shocks. Unable to type when they hit. Have to breath hold. There is no breathing though this for me. I had hopes to hand cycle and try to have a life tomorrow but now this.
    Saw doctor who made fun of me that I would try Neurontin over Lyrica to save 100 dollars a month. Told me it was a cheap behavior based on my religion. Nice. Awoke wife with my screaming. She can't sleep now. Took valium, more Neurontin, oxycodin.Listening to Prokoviev 2 and 3 piano concertos at full blast. Now stravinsky violin concerto all for distraction.Despite all the drugs and the music distraction, the electric shocks come through every 30 seconds for 10 seconds of breath holding.
    Any ideas on what to do? Is it really worth it? Sleep is out of the question. I want to maintain my plan to wake up in 1 hour and go hand cycling. I refuse to be beaten by this.

  2. #782
    I fucking hate waking up in the morning. Every morning it is the same, I have my pill salad laying on the nightstand next to me with a bottle of water. Eat the pills and debate if I can make it to the bathroom and cath. I am so twisted in the morning the transfer from the bed to chair is a challenge, but I am too pigheaded to cath in bed. So I eat the drugs I both love and hate and wait, hoping I don't piss myself before it gets so I can make it to the bathroom.

    @arndog Times like that I really miss my dog. He would know, come and stick his head on the bed and since at 230 am the nag machine is off in her room I would let him up. Now I get out of bed and go outside and look at the stars. Stay strong man.

  3. #783
    Haha - the nag machine - thanks for the funny concept. God bless her. Yes, hugging my 85 lb dog in bed does help. Next time I will let him up. But once he is invited , he thinks it is his right to be up there every night. I guess he really likes tempurpedic mattresses. I awoke at 9am which is 3.5 hours later than usual for me. I refused to let the bad night alter my plans. I drove up to Truckee and hand cycled with my 'bro, Wellman in Tahoe Donner, all climbing -maybe 2.5 hr ride, not really cooked. Staying ahead on the pain meds today. Still getting the shocks. Was a little looped when I wrote my prior post upon rereading it. Hey, it was 2:30 am...

    I refuse to let this pain stop me and close me in the house. I can work, exercise through it with the help of medication and pigheadedness.

    TBurst - get some touchless catheters by Bard and cath in bed before getting up. I then tie a knot in the plastic container and it doesn't leak and I throw it in a drawer. Then I take it to the bathroom in the am. I am way to lazy to get out of bed to cath. I set the timer for 2am and cath then too. I use the touch less catheters in a tent from the sleeping bag, in my car. I don't know what I would do without those touchless catheters. I like the Bard brand cause the bag is long and thin and I can tie a knot in it so it doesn't leak and throw it out whenever....

    afterthought - last night , I would have liked Michael Jackson's doctor to give me propathol assuming he would hang around to be sure I was breathing.....
    Last edited by arndog; 06-28-2012 at 09:33 PM.

  4. #784
    Haha, when I visualize to get to sleep, my go-to vision is of a doc w/ a needle full of propanol. Macabre? maybe. Soothing? It is to me.

  5. #785
    Seems like 2 to 2:30am is the magic time! Sometimes I'm just awake all night, but if not....I wake up then with hours to go before I can take the handful of meds ready and waiting! I refuse to take them early.....I follow the instructions, I discovered it was'nt worth it to cheat and run out at the end of the month. I'm seeing the doctor at my next appt to discuss raising the meds. Otherwise, you just see one of the NP's there. In two years I've only seen the doctor three or four times. I've tried to stay on the same meds for as long as possible....I have no where else to go, except Methadone. And I'm saving that for the last resort. When you're chronic and severe and the pain is going to keep getting worse and traveling up my legs, I don't want to use up all my options at once!

    Pfizer finally got the feds to approve Lyrica as the first medication made for neuropathy last week. And even though I can't take it due to side affects and cost, I see this as a postive move for others to find other medications for neuropathy! I certainly hope so anyway. We need some help in this area! Now they need to get the cost down so that those it works for can afford it!

  6. #786
    Quote Originally Posted by arndog View Post
    Haha - the nag machine - thanks for the funny concept. God bless her. Yes, hugging my 85 lb dog in bed does help. Next time I will let him up. But once he is invited , he thinks it is his right to be up there every night. I guess he really likes tempurpedic mattresses.
    Yeah, dogs love the bed and it is a bad precedent to set. There was always dog hair and slobber as a result, but changing bedsheets is something that you get used to having SCI


    TBurst - get some touchless catheters by Bard and cath in bed before getting up. I then tie a knot in the plastic container and it doesn't leak and I throw it in a drawer. Then I take it to the bathroom in the am. I am way to lazy to get out of bed to cath. I set the timer for 2am and cath then too. I use the touch less catheters in a tent from the sleeping bag, in my car. I don't know what I would do without those touchless catheters. I like the Bard brand cause the bag is long and thin and I can tie a knot in it so it doesn't leak and throw it out whenever....
    .
    It is not an equipment thing, I actually have a bunch of those touchless cath systems for the car or travelling. SCI is a battle and one of the lines I have drawn is I am going to use the bathroom to pee in my own house. It is arbitrary and stupid but I feel if I give up on it I have lost something. Most likely age will change this but for now if I can do it I am going to. I am not knocking other people who cath in bed like I said it is my own personal thing, you go to Truckee no matter what and that is the same mindset.

  7. #787
    It is intersting for me, an AB with a spouse in the pain all of you describe (and I helplessly witness and do not doubt) to read about the nighttime ordeals.
    I did not realize it was also common.
    Dave stays up very late-like he just doesn't want to go to sleep. He takes enough meds to kill a horse at night and does not sleep.
    I can see why you think about proponal.
    The early very mornings he wakes me (the nag machine-haha "do a weight shift,help me make this decision,are you listening to me?)
    and just mouths the words "phantom pain" and is grimacing makes me wish I could do more.
    All I can do is get the Lyrica early, ativan and a percocet or 2, maybe turn the ceiling fan or TV on for him. Then hopefully he sleeps a little more.
    I know the size of balls it must take for you guys-and ladies-it must take to start some of these days and admire you all.
    I greatly believe that using this form is a great help to those who may not even comment, but don't feel alone. I will let him know the night issues I read here.
    But what is it about the night that makes this happen worse?

  8. #788
    Arndog -- am so relieved you were able to get back to sleep and remain impressed as hell with your drive to not let the pain steal from you the things that keep you sane and give your life real quality. How did you finally manage to suppress your awareness of the shocks enough to fall back to sleep?

    Smokey - I used to share your mindset about saving the big gun pain meds 'for when I really needed it.' Then I took an objective look at my life. I was miserable -- my pain was so bad that I had no life, let alone a quality one. I couldn't sleep because I was in agony, and not sleeping made it even worse. It was a vicious spiral straight to hell. IS ANY OF THIS SOUNDING FAMILIAR??

    I was finally forced to switch to methadone because I could no longer afford the Oxycontin. The difference in how well it works is nothing short of miraculous. I am so mad at myself for not trying the methadone sooner -- I suffered unnecessarily for ten years, and worse, I missed out on countless opportunities to enjoy myself while I still had maximum strength and was more of a para than the quad I am now.

    Please, my sweet friend, there's no reason for you to keep suffering so badly all the time. Learn from my mistake. Before your next visit to the pain clinic, go back and review the posts you've made in this forum and especially in this thread that talk about how miserable you are. You deserve relief NOW, not after another 2? 5? 10? years of uncontrollable suffering. There's no prizes awarded for hanging on the longest. The only thing you win is needless suffering and missed opportunities.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  9. #789
    In January it was actually my pain doctor who told me I needed to hang onto what I had for as long as I could because I would get progressively worse and needed to save the Methadone for a later date. But, like you say, this is just pretty much a waste of time! I can't do anything much anymore.....and I'm tired of it. My next appt in July is with him. I want something done now. Or what's the point! Quality of life sucks!

    I'm glad you finally have something that is working THC! I'll see what he says!

  10. #790
    T, since it's the doc telling you to hold out, I strongly recommend you take *him* a copy of every post you've made about your suffering in this thread and in the forum since the last time you saw him. Tell him that you can't "hang on" (do the air quotes if your fingers work) any longer, hand him the printout and tell him that if he has any doubts you need to try the methadone, here's a pain diary you've kept during the last six months that describes in detail how little relief you're getting.

    Visual aids work.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


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