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

  1. #971
    Senior Member alan's Avatar
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    Quote Originally Posted by Cowboys_Place View Post
    how do you all cope, I don't know how I'm going to keep doing this..
    I'm alive because I have no way to change that. Even if I did, my damn survival instinct would probably keep me from making use of it. However, I'd still like to have a way, just so I know I have one should the time come when I desire to use it. My nightly wish sure isn't working.

    I don't think I'm coping, even though my therapist thinks I am. I have no life, certainly nothing like all of you seem to have. I do admire you guys and gals.
    Alan

    Proofread carefully to see if you any words out.

  2. #972
    Hi Bollefen, Dejerine, cowboy,smokey, dragon fly, Alan and everyone who reads this.. Just checking in to say hello.

    Dej- thanks for your incredible descriptions of bad pain 24/7 -the grocery bag description was new for me - your descriptions are so humorous - I hope it is okay to say I enjoy them.
    A lot of it is 'affirmation' of what people here experience, just like Bollefen's doctor did at the beginning of her visit with him.

    Bollefen - I think the reluctance with valium as compared to opiates is that valium withdrawal is life threatening whereas opiate withdrawal is miserable but not life threatening.

    I quit trying to explain anything to the pain management specialist. He is in another world, or should I say I am in another world, a parallel universe from him.

    I am concerned about the direction of US medicine and the war on opiate misuse will create collateral damage on true chronic pain sufferers, limiting access.
    Dej - the bright side for lack of opiate response is that you won't have to worry about this.

    Cowboy - do you have some distraction that helps? Listening to really loud music, TV shows ( I am a fan of Battle Star Gallactica rent the whole thing and '24' - all 8 seasons), I can't read when I am suffering greatly so books don't help. Going outside always helps, at least in the beauty of western US - I am not sure where you live.

    I am glad that CC is back up and running.

  3. #973
    Senior Member Cowboys_Place's Avatar
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    arndog, yes I have a few distractions that I try to keep my mind occupied with music, movies, car rides on the roads of beautiful Northern California and occasionally gambling :-)
    Unfortunately as everyone here knows all too well when the pain is unbearable it's impossible to find something too distract your brain from what's happening to your body!

    On another note you mentioned that Valium can be life threatening whereas opiate withdrawal is just miserable, why is valium withdraw life threatening? Six years ago I started taking Gabapentin (sp) and hydrocodon then switched to lyrica and oxycodon. Recently I stopped taking oxycodon and switch to Valium twice a day which seems to have helped with the severe cramping in my abdominal area not to mention I've been sleeping much better :-)

    I hope and pray everyone has been having even just a little reprieve from their pain!!
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  4. #974
    I read this and it hit home. I mask my pain, smile,lie, try be a good Boy Scout but the pain is so bad at times I am not sure how my wife tolerates me. She sleeps in a different room, so not only no sex (not that I can even get it up) but no comfort of another's touch when alone and most vulnerable and needy. The pain, the loss of my life, the man I am no longer, the husband, father, grandfather, valued favorite uncle, all gone. I hate the pain and I hate the loss. Last nite was the worst, I swore today was the day to exit but I don't have the balls and don't want to make it worse if I fail. Thanx for letting me rant, I don't feel any better but ...........

  5. #975
    Hi Arndog

    Yes, I don't have to worry about opiate withdrawal and I understand your humor. It reminds me of the skit on Saturday Night Live when they talked about the "advantages of being blind". The main point was how blindness enhances the other senses, such as smell. To which the blind person says, "Are you kidding? Enhanced senses? Yeah, like how bad my seeing eye dog's fur smells when it rains!"


    We could make a long list about the advantages of Central Pain:

    Experiencing an ephapse

    Having a chapter in the Textbook of Pain devoted to us, also no chapters devoted to us, nor even a mention of us in Adams and Victor's Textbook of Neurology which all our neurologists rely upon, base their concerns on, and will view our story through.

    Following Doctor House better when he diagnoses synesthesia

    Not overfocusing on the paralysis/weakness/sensory loss thing

    Early to bed, early to rise, early to not being able to go to sleep and to multiple sleep interruptions during the night

    Less fixation on clothing because it all hurts

    Not having to ponder "Invisible touch", light touch being a heavy for us.

    Knowing that if the car A/C fails that it's okay because no more blasts of cold air on the skin.

    Thinking how great it is to have a proximal body when the distal parts burn so much

    Dysesthesia, the seventh sense nobody else has

    Less suspense about what hell would be like

    The satisfaction of knowing that the electric shooting pains do NOT mean we have tertiary syphilis (very hard to explain to the wife), because it's just the Central Pain (even harder to explain).

    Knowing there are six whole people at NIH researching basic pain, less than those monitoring the safety of bubble gum flavors, but still, six people is six people. It adds up.

    We get to swear on Grange's thread and no one stops us because we're all crazy anyway.

    We know what tomorrow will bring

    Since the only ones cured of Central Pain are a few with expanding syrinx, we can always be optimists and figure if we get a syrinx, we have got a chance. (As in Jim Carrey's chance at a date in Dumb and Dumber)

    Learning to speak in analogue, such as "How much do you like that chocolate shake on a scale from 1 to 10?". With this background, I expect to be a guest judge on Dancing with the Stars any day now. Their habit of no costumes already fits my preferred type of dress.
    Last edited by dejerine; 03-02-2014 at 10:41 PM.

  6. #976
    That is absolutely hilarious - Thank you. This is great stand up comedy …. or in our case, sit down comedy.

    Favorites -
    We know what tomorrow will bring
    Not overfocusing on the paralysis/weakness/sensory loss thing
    Less suspense about what hell would be like
    The satisfaction of knowing that the electric shooting pains do NOT mean we have tertiary syphilis (very hard to explain to the wife), because it's just the Central Pain (even harder to explain).

  7. #977
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    To all who have posted on this thread, I want to say I am so sorry for the pain we all suffer and I want to thank you all for the informative posts. I finally have a name for my pain and something to show my husband so he doesn't think I'm imagining things. I am blessed that my dysaesthesia (new word for me) is now at a moderate level unless someone touches me or a piece of paper falls on my left leg, it is tolerable. My husband now knows my insistence on soft comfortable clothing isn't out of sheer laziness but necessity. Thank you.

  8. #978
    Quote Originally Posted by Fragile View Post
    15 years of quadriplegia is bad enough, but five years suffering from pain is pure hell. The worst part is there is no relief in sight, tomorrow will be worse. What I wouldn't give to die a quick painless death.
    are u getting meds? im on fent [patch which brings my pain to a rough 9 down to an annoying 5, but i may ask for pills, i dnt feel like i need it 24/7, i just wanna take it wen o need it...
    "With my lightnin' bolts a glowin'
    I can see where I am goin' to be
    when the reaper he reaches and touches my hand."

  9. #979
    Annie M

    Your husband is reasoning the way most everyone does. Less sensation should mean less pain. The body is trying to heal the injured cord so it protects it from further injury the way we are tender when our skin is injured. Part of the healing is to make the area tender.

    In humans, we can heal peripheral nerves but not neurons in the central nervous system. (Birds and certain fish CAN heal the CNS). So the protective inflammatory chemicals continue to be produced. The body is imperfectly telling us something is wrong, and to be careful.

    Boivie's Paradox is "One must loose sensation in order to be a candidate for greater pain (ie Central Pain)." It is very hard for the ordinary person to understand how this could happen. And it does cause communication problems between husband and wife.

    The "eye is the great monopolist of the senses". If I were bleeding my wife would undoubtedly conclude I had been injured. If there is no visible sign of pain, people are unable to recognize what is going on. Of course, there is actually a visible sign; namely that you cannot wear ordinary clothing, dislike light touch, and don't like blasts of cold air, but since CP is rare, those signs do not automatically support what you verbally say.

    Furthermore, you have no vocabulary to describe dysesthesia so you sound squirrely. We all do. For a very long time, even doctors did not know that nerve injury pain is different from ordinary pain. This was discoverd by Ron Tasker, a neurosurgeon in Toronto. John Bonica invented the epidural block in the 1930's and used it on his wife, but it took fifty years or more before other doctors began to use it. Labor is common. It may well be that long or longer before the average doctor hears about Central Pain and Tasker's findings.

    I think part of the problem is that everyone has had pain and feels they are experts on it. They know all about it. It is very hard to convince these "experts" that with nerve injury, pain can become fragmented and reassemble in novel ways and occur with stimuli that should in no wise be painful, or even with no stimuli at all. At the molecular level, we know this pain is due to the leakage of sodium ions across the nerve membrane, leading to acid formation, which indeed feels like acid to the suffering CP patient. But ion channels are not taught in college, so the public has little awareness they exist.

    If your husband googles NaV 1.7 and NaV 1.8 (the ion channels of Central Pain) he may become more aware of possible manifestations of nerve injury pain. If he is technically oriented, he could also learn about "crossed afterdischarge" which is described by Marshall Devor. An injured neuron has glial cells around it which produce inflammatory chemicals to hypersensitize the neuron. Devor showed that these chemicals spill onto normal uninjured neurons and cause them to fire, even after the injured neuron is no longer stimulated. Hence, the name, "crossed afterdischarge". The discharge of pain signal continues in healthy neighbor neurons for a very long time since the glial cells keep producing inflammatory cytokines which are also growth factors, such as BDNF. The attempt to heal with growth factors produces neuroinflammation, which feels like acid under the skin. That is because there IS actually acid in the pain nerves. As we all know, acid burns.
    Last edited by dejerine; 03-03-2014 at 05:23 AM.

  10. #980
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    I'm happy to see posts by old friends in the pain forum but, of course, unhappy that you are all still suffering. The freezing burning pain never stops, does it?
    2012 SCINetUSA Clinical Trial Support Squad Member
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