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Thread: I hate my "new" life

  1. #21
    Quote Originally Posted by smashms View Post
    1800 mg of neurontin with flexeril and hydros for breakthrough
    I wish that worked for me.. im on a giant dose of neurontin and flexeril and hydro do nothing.

    My body is like resistant to all me meds

  2. #22
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    Quote Originally Posted by jody View Post
    I was wondering how cymbalta worked. It was prescribed to me but my insurance would not cover it. It was promising for nerve pain.
    Are you taking it as directed? and is it at a theraputic dose?

    I read in another post you have pseudonymous. That is a mean bug. it might take some efforts to treat it.

    What if you moved closer to home? I moved to sc a couple years ago, and went back to pa to visit family, am I homesick for my peeps.

    we dont live in legal states, but I was able to try some medical MaryJ with properthes for pain control, and suprisingly, it worked so much better than I expected. that gives me hope for future pain control at least.

    just hang in there now, ...Im not trying to blow sunshine up your para keester, sci sucks. some days suck more than others, but in general life does get good again.

    I just started cymbalta for pain, on top of my normal meds. Remind me to let you know if it helps. Too new to say right now.
    2012 SCINetUSA Clinical Trial Support Squad Member
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  3. #23
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    Quote Originally Posted by jbridges9 View Post
    The problem is that my family is 4 hours away in North Carolina. They come to visit and when they do I don't want them to leave. It breaks my heart.

    I am working part time remotely but lately I've been so apathetic about life in general I don't even open the computer some days. I do IT Consulting and have a lot of work to do and I used to enjoy doing it, it occupied my time.

    I am depressed, definitely. I take Cymbalta for it but it hasn't been so good at keeping it at bay lately.

    It's hard to ignore the pain for me. Even when I'm involved in something, the pain is still attacking me.

    Hang in there, man.
    2012 SCINetUSA Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

  4. #24
    its gets better. first 5 years was worst. the sting never goes away but you will move forward and have a good life if you choose to. just never accept sci, if you do it wins. sports have always been huge for me. they were my life b4 and have been since sci. training keeps you focused.

  5. #25
    Quote Originally Posted by jbridges9 View Post
    I am T3, and thank you for the replies. I hope I get the UTIs and all other infections under control. I am super spastic (to the point I can feel the tightness in my chest/abdomen..even tho I can't feel anything else there!) when I have a UTI, and my neuro pain goes even higher.

    May I ask what you are doing for pain management, if you haven't already told me in another post

    Jason
    For some reason it took a random doctor I saw after falling out of my chair to get a prescription for baclophen which really helped my spasms, you should try it if you haven't already.

    Gabaprentin made my neuro pain worse, took a while to figure that out. Fenanyl made me a zombie and oxycodone works okay but when I started taking valium I stopped taking oxycodone. There are days I miss it but I try and limit the different types of medications I take. Methadone and valium keep the burning/tightness under control. It took the longest to find that Valium helped. Flexeril, Tizanidine, a couple other muscle relaxers all did nothing.

    So to sum up methadone/valium/baclophen. I am pretty much can't get out of bed with all three. How much of each I take during the day depends on my pain level.

    Don't get caught in the increasing dosage trap. Your pain will never go away, it is all about managing it. Also what works for me may not work for you. I know arndog uses Elavil (he is the other mod of the pain forum) with some success, Lyrica seems to be a mixed bag, some people it helps others not.

    Also there are a lot of people on these boards who don't have SCI but like to give out advice about pain management. While I don't doubt they have pain, I would take their advice with a grain of salt. All pain is not equal, and your best tools are determination, a doctor who has experience with SCI patients and looking at it as a process. Take notes as to what works, doesn't work. Listen to your doctor, he changes your meds ask how long you should give it till it works/doesn't. If it doesn't go back tell him, take your notes along with the history of what you have tried.

  6. #26
    my docter just said id be a good canidate for a baclofen pump do to severe stiffness in my calfs & hams,60mg baclofen,3600gabipentin.

  7. #27
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    Jbridges,

    Please know this; IT WILL GET BETTER!

    Give it time, you'll learn that what has become of your "new life" isn't so bad, after all. It's probably not something you'll ever grow accustomed to, it's something that will simply be.

    Hang in there. Not just for your family, but also for yourself. You've also got us to lean on from this forum. I wish I had that when I started this in 1989.

    Take care.
    Rollin' since '89. Complete C8

  8. #28
    My husband had a high level SCI 4 years ago and pain that is always there, flaring worse at times.
    After much trial and error what seems to be working the best is Lryica 150 3X a day, Ativan before bed and during the day he really gets wrapped up in the pain.
    He also takes Percocet as needed for neck pain and baclofen for spasms.

    One of the most cruel surprises of SCI was this pain. I simply could not believe there was no answer for something that I learned was so common and debilitating.

    As for clergy, that is a personal thing. I did not like hearing "this was in god's plan for you, everything happens for a reason,god won't give you more than you can handle, there are always miracles blah blah blah......"
    If that helps some people I am happy for them. We all have different beliefs.
    Last edited by LindaT; 01-04-2013 at 10:09 PM. Reason: typo

  9. #29
    Senior Member anban's Avatar
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    As you can see, you're not alone, even if you don't know anyone else in your situation. You've been given some great advise. The pain...it s.u.c.k.s. But aside from meds (which I prefer not to use), I think it's managed on a psychological level and a physical level. The more I move, the less I hurt.
    I'm 5 years into it and the first coupla years are ones I'm happy are over because things do get better. They will get better.
    Last edited by anban; 01-04-2013 at 04:15 PM. Reason: quad typing errors

  10. #30
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    Anban,

    I love your reason for editinf. I call it :crippy hands", myslef.

    I left my awesome hand skills unedited on the line above for true effect. Or is affect? I can't figure that one out for the "no life" (ha) of me.
    Rollin' since '89. Complete C8

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