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Thread: We're the orphans even here at CareCure

  1. #21
    Quote Originally Posted by jody View Post
    I dont think it matters it people totally get it.
    I found I think, that its kinder to spare my friends a family the description of my pain.
    they know its really bad sometimes. I dont need to say. Im quieter and less active, and hold my breath alot.
    and you are wrong about people here not getting it. there are a few people here with central pain.


    im ok with people not knowing what its like to feel like your feet have been set afire. the only people I really need to get it though is my Dr's, if they didnt get I would have no control at all.

    .
    I agree with the above. It may be futile and only frustrating to seek validation about this condition outside of yourself. And that includes friends, family, husbands, wives, other people on the internet. Being in chronic pain is already so isolating, but for me, other than possibly convincing my PM doc where I am with it, there is no one to convince and I do not seek validation outside of myself. Nor does validation change the experience any, unfortunately.

  2. #22
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    The only validation I want is to not end up in the nuthouse LOL

    I went off of Cymbalta in December and tapered off of everything else in January at the request of a PCP who has worked in the VA with spinal cord injuries so she says. I have been on 50mg of Topamax AM and PM plus my bladder med.

    My accident happened in 1989 and I didn't have to take medications until 2004 when I started not being able to live with the pain.

    Even an able bodied person would be stressed with what has been going on in life itself but add in the pain and the coldest December on record here in NC, humidity, bamometric changes, and I am out of sorts.

    I think my doctor gets it as she has made efforts to do everything that I have asked.

    I just hate feeling confused all the time and I can't even blame it on the drugs... I am going to call on Monday and refill my prescriptions. At least it was manageable.
    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

  3. #23
    Quote Originally Posted by darkeyed_daisy View Post
    Of course this is in the PAIN forum so why would YOU ASSUME he was speaking of Cerebral Palsy? I usually don't google before I post...

    And...no he doesn't have to type a little more or define his terms...you just need to read and comprehend a little more before responding and going off or perhaps not respond at all.

    Do you have central pain? I understand why he feels this way. Seriously!

    Thanks.
    Guess you think that people with Cerebral Palsy don't have pain....

    I was googling to try to get some understanding of what the original poster was trying to discuss, since in my mind, he/she was not clear. A search for "neuro-CP" only turned up information on Cerebral Palsy. I was in fact going out of my way to "comprehend a little more." Give me some credit for trying instead of jumping down my throat.

    Further, I do think that we have an obligation when we start a thread to make our situation, position, condition, opinion abundantly clear to those who will read and respond to the threads we post. If that takes a little more time, effort, and typing well, that's what it takes.

    All the best,
    GJ
    Last edited by gjnl; 03-13-2011 at 12:34 PM.

  4. #24
    GJ

    At one level I'd like to say screw you but if you didn't know so be it. DUH. I also think if you'd read more than 1 post here in the pain group or looked past the nose on your face....

    1,300 posts and you need a definition of CP in the pain section. That said I also discussed an SCI (do you know what that is) and a lower lumbar injury (is that also unclear) or are SCIs and specifically lower lumbar injuries and part of cerebral palsy I missed. so face it you're defending your stupidity or ignorance or??

    You may be the definition of what I mean by orphaned even here.

    That said I did not say central pain syndrome nor define it. So kudos for you, for pointing that out.

    bill
    Last edited by bollefen; 03-13-2011 at 12:40 PM. Reason: typo
    Kindly,

    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

  5. #25
    Senior Member Van Quad's Avatar
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    GJ, please

  6. #26
    Senior Member Van Quad's Avatar
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    FYI Daisy my incredibly burning gut turned out to be referred pain from my bladder. Amitriptyline helps.

  7. #27
    Moderator jody's Avatar
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    describe you pain folks.

    your central pain
    cauda equina pain
    pain of using a vent
    describe the pain in your aching heart
    describe how the pain meds work with your pain

    describe the pain of being labled a drug seeker,
    the pain of being dependant on powerful addicting pain meds.
    how it keeps you from commiting suicide. how it wears you out.

    describe your monster.

    then lets compose something intelligable from what we learn that we can send to pain doctors everywhere.

    I was lucky to find an unlucky phsychiatrist who's son had commited suicide after a spinal cord injury. he sent me to a Dr farrara who is out of jefferson magee in philadelphia. He is one pain doc who understands sci pain.

    I really think that dr might just be interested in what we might have to say, so how about we try to come up with something to let people who treat pain know what they are treating.

  8. #28
    Moderator jody's Avatar
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    we have members here with cerebral palsy. most of us do know how much pain they are in from past posts, and that every one person has their own kind of pain.
    Im sorry to have overlooked the pain of cerebral palsy. in my above reply. yes, describe that too.
    instead of saying we dont know squat about this or that pain, and that no one cares to understand it, ....... well, some people do want to understand.
    so make a list and hit reply.
    p.s.
    GL, and gjnl are two separate members by the way.

  9. #29

    Communicating our neurological pain

    I don't quite get the original post. From what I have read about pain here over the past two years I have read a LOT about debilitating pain. We are not put off by any means.

    Here is a post from arndog; "CP (central pain) makes you a CP (couch potato) unable to concentrate on the simplest CP (crossword puzzle) and makes you into a CP (crazy person)."

    I have written quite a bit about my pain, most of which you don't want to hear or think about because I am 73 years old and YES the PAIN does get worse over the years!

    I am in the process of getting the DREZ, but a 3rd degree foot burn has put the DREZ off for three or four months because the skin graft did bot take because of a lack of proper blood supply/circulation in my legs.

    I use the Fentynal patch 100 mpg 24/7 - I have increased my dosage of pain meds up to four Oxycodone and four Ibuprofun a day, I take one to two Diazepam 5mg a day - one aspirin for good measure - this works on about 60% of the pain. I have so many areas of pain that I am not going to write them all down.

    The latest pain that has arrived is as Doctor Falci asked if I had the feeling of a rough splintered stick stuck up my anus! I have been prescribed a type of Xanax twice a day for this. This actually helps at about the 85% level, it masks the pain, other wise I am going mad and have spoke with friends and family of voluntarily ending my life which is a drastic as it can get but the pain, even when I slip up on my med schedule and miss a dose or two the feeling/sensation is beyond insanity.

    I am so thankful for the CCC Pain forum!

    Thank you all for being there.
    Gary Is = L-1 Para for 34 years.....................
    ~~~~~~~~~~

  10. #30
    Quote Originally Posted by bollefen View Post
    GJ

    At one level I'd like to say screw you but if you didn't know so be it. DUH. I also think if you'd read more than 1 post here in the pain group or looked past the nose on your face....

    1,300 posts and you need a definition of CP in the pain section. That said I also discussed an SCI (do you know what that is) and a lower lumbar injury (is that also unclear) or are SCIs and specifically lower lumbar injuries and part of cerebral palsy I missed. so face it you're defending your stupidity or ignorance or??

    You may be the definition of what I mean by orphaned even here.

    That said I did not say central pain syndrome nor define it. So kudos for you, for pointing that out.

    bill
    It is unproductive and petty to call people who are on this forum to learn and share stupid and ignorant. A better way to respond would be something like, "I'm sorry you misunderstood my thread. I am talking about people diagnosed with central pain syndrome. You might like to refer to this link http://www.ninds.nih.gov/disorders/c...ntral_pain.htm for further information and clarification." Thank you for your concern in responding to my thread." Would that kind of civil response be so difficult? A little politeness would go a long way in helping people to understand your point of view. Anger, belittlement, and scornful responses are pointless and take away from your purpose in posting, that of making people aware of the lack of understanding and concern for your ailment.

    Unpleasant as you and others (who responded with disdain) have made it, I have learned a good deal about Central Pain Syndrome, which was not on my radar screen before. Your mission accomplished.

    All the best,
    GJ

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