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Thread: What a difference PAIN makes

  1. #1

    What a difference PAIN makes

    This is so obvious to some people, but when my pain got really high a few days ago I remembered WHAT A DIFFERENCE it makes in my mood, my outlook on life, my ability to relate to people, MY SLEEP (which in turn then affects all those things even more). It zaps my motivation to exercise and plan things, it makes me think I don't care about people or life or my dreams, and it makes it hard to be patient and listen to people, etc...

    I am one who usually has about a 4 level pain that I can usually distract myself from, sometimes it is lower and 1-2 days a week it goes up to maybe 8. Occasionally it is off the charts with repetitive, electric "jolts" that make me cry. So it is very up and down and when its down I can forget what a difference high pain makes.

    So just a reminder to be easy on ourselves when our pain is high- how we think and act during those times may not be who we really are.
    I pray for a cure and for better remedies for neuro-pain!

  2. #2
    Hi Darlagee - you are preaching to the choir. It has been near impossible for 11 years to make plans for anything other than to "get through the day". I can't make plans regarding the week, month or longer. I feel cheated that I am developmentally arrested by this whole pain/SCI business. There have been a few good moments but not many. I can't remember things, events due to pain and medications.
    I agree that sleep is critical and I am so much better off with 9 hours rather than 7 hours.
    Chronic unrelenting CP/neuropathic/SCI pain is isolating, one becomes a hurt animal who will snap at loved ones. It is a constant state of sympathetic outflow that has elevated my blood pressure over the past 11 years. I am trying an old medication called Clonidine, which is a centrally acting blood pressure med that reduces sympathetic outflow - it is supposed to help with chronic pain, used to blunt opiate withdrawal, and reduce blood pressure killing two birds with one stone- I think it helps and certainly makes good sense for those who find chronic pain elevated their blood pressure. I also had to start Losartan for chronic pain induced Hypertension.

    All my gimp friends are having butt abscesses with osteomyelitis, unrelenting UTIs that are resistant to antibiotics, shoulder impairments requiring surgery, hernia surgery, elbow pain, ischial ulcers, pressure sores - it is always something with gimps with very little clear sailing.

    I don't remember having 'ease' for longer than 1 hour perhaps because I took meds and there was high pressure in the weather. Things are always in crisis mode. I watch ABs put their bare feet in those moccasins with fur on the inside and I try to remember what it feels like to be at ease in one's body. To lay in bed and feel okay from your toes on up. There are some complete injuries that never had pain despite paralysis -whoa - what a different experience that must be. This is a big price to pay for crutch walking and being incomplete. It is what it is ...

    Okay, I am done with my whining pity party, I got it off my chest .. . Sorry y'all.

  3. #3
    Arndog- wow. This is a sobering reminder of how unique every injury is. I will never stop praying for a cure and for relief from the insane pain sci can bring.

    (& btw legit "whining" like yours is always welcome on my threads )

  4. #4
    Senior Member
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    Arndog, hard to respond, but I get it.
    2012 SCINetUSA Clinical Trial Support Squad Member
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  5. #5
    Darlagee, I relate with your whole post. I seem to be at the same spot.
    Those "jolts" are harsh, sorry you expierence them.

  6. #6
    I hope I didn't change the direction of your thread. Darlagee- your conclusion that at the height of pain - we may not act and think as we truly are is very true.
    I gave a perfect example - I was in a particularly miserable mind set and demonstrated your point exactly as I went off in a tirade without the usual optimism and glass half full attitude.
    And as you said, be easy on ourselves, so no apology is really necessary.

  7. #7
    Senior Member SuprSi's Avatar
    Join Date
    Jan 2012
    Southampton UK
    True, my scale varies very much like yours, Darlagee, fortunately my family and friends understand when I'm a bit snappy. I'm usually very chilled and happy so it's quiet a contrast on bad days. The really bad days suck but thankfully I only usually only have one day like that in a week. Having a taste of the bad pain I really do sympathize with everyone worse off, IMO a cure for neuro pain is far more important than a cure to walk again.
    T11 Asia A after near-fatal bike crash.. Just happy to still be here

    No, I didn't loose my mind... It got scared and ran away!!

  8. #8
    Thank you lonecoaster, arndog and suprSi. I love this forum. Just being understood is somehow so powerful and hopeful.

  9. #9

    We cannot help, no matter how hard we try, what the complications of SCI do to us, our lives and all those with whom we interact.

    It saddens me how I can behave on a really bad day.

    and Jon, face it, it is all in your mind you wuss!!! :-)



    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  10. #10
    Senior Member alan's Avatar
    Join Date
    Jul 2001
    Baltimore, MD
    I have (made no) life, because of pain. I can't focus on anything (and I already had ADHD before I was injured and developed the pains.) I'm a wimp compared to you all.

    Proofread carefully to see if you any words out.

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