View Poll Results: At the time of my SCI, the surrounding circumstances were:

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  • Unpleasant

    9 15.79%
  • Disturbing and shocking

    23 40.35%
  • So terrible I dont' want to think about them.

    11 19.30%
  • So terrible that my mind has blocked the memory out.

    14 24.56%
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Thread: How stressful was your SCI?

  1. #21
    Senior Member alan's Avatar
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    I lay on sheets. I wear clothes (though I avoid shirts as much as possible.) Are they trying to tell me I don't have severe CP?? The severity of that particular aspect of CP is worse in others than in me, but that doesn't lessen the overall severity of my CP.
    Alan

    Proofread carefully to see if you any words out.

  2. #22
    Alan, you definitely have severe CP. I suggested an editorial modification, via email, based on what a British doctor wrote, and the editor promised to clarify. Anything that would exclude you is of course, poorly worded. Maybe it teaches us that where pain is concerned it is simply unworkable to try to use the terms, "severe", "moderate" etc. Yet, on the so called "analog" pain scale, 1-10 is taken seriously, so we need a little more scientific way to do it.

    I won't name him but one NFL player with SCI also had a little CP. He still wears suits and dresses fully, saying the burning is nothing more than a sunburn. I have actually talked to dozens of people with CP where it feels like a sunburn, but they go on and function, and even dress normally.

    I think these people may not be talking about the same kind of sunburn I got in Hawaii once that put me in bed for a day (what a waste of a good hotel room).. It was just so dang much fun out there on the beach. I peeled three times (yeah, I know there are only two layers of your skin--I must be part Martian, maybe NASA should have a look) in sheets as big as your hand. I have also talked to a number with CP who are crushed into nothing by it and think "sunburn" doesn't begin to cover it, and would rather die than wear shoes and socks. I have also talked to quads who don't have it unless they take hold of something warm and then it kills them. Many flavors of CP. I don't think the difference is their fundamental nature, I think the sicker ones are actually in more pain. I think all groups benefit if they can avoid stress, and that is what got me wondering.

    This reminds me a little of an argument I once witnessed between Hubert Blumberg and Jose Ochoa over who has SEVERE RSD. Of course, we don't call it that now, largely because of the issues they threw at each other. Blumberg felt skin temperature change alone was sufficient for a diagnosis of RSD (now called CRPS). Ochoa felt there had to be atrophy of skin and swelling. I was interested in the discussion because I have atrophy of the skin on my feet (smooth and thin), loss of hair from above the ankle, and the SENSATION of swelling. I was trying to figure out if my feet were actually swollen. The two docs could never agree and left with ill feelings. Here, we are just trying to think about why some SCI gives CP and some does not. THere has to be a reason. If Kramer is right, there may be a predisposition to develop CP in some people. Once the CP is established, psychological variation affects the day to day experience, and here it seems essential to avoid stress. When someone says they have severe CP, but no stress, I am confused. I thank all who have posted, as it always gives me a broader perspective, even if they think I am nuts, insensitive, or stupid. I can always blame it on the neurontin, klonopin, elavil and other meds. One of my docs said if your meds help, you don't have severe CP. That is just HIS definition.

    I think we all get the idea. Moderate CP over all your body is severe and bad CP in one hand is not severe. I know one man who only gets it in his lower legs and only gets the lancinating pains, but he is an emotional wreck, taking enough opiates to keep the Afghanistan economy going. I just stifle the yells when lancinating pains hit my legs and don't worry about it, but the skin burning really empties me out because it never leaves. Is HE severe? Am I? We both are. It seems grotesque for one spine injured person to say MY injury is severe, but YOURS is not. Yet, as to Central Pain, it is almost certainly true. Kevorkian does not appeal to all of us, but some of us need no convincing. If you showed up, he took your word for it that yours was severe.
    Last edited by dejerine; 08-30-2005 at 01:12 AM.

  3. #23
    Member georgeh's Avatar
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    Stress levels

    My SCI was probably one of the least stressful of my major life events. I fell off my roof, broke my back, and suffered a closed head injury. I woke up 4 days later in rehab with no memory whatsoever of what had happened. Someone broke the news to me about my SCI and mentioned that I'd never walk again and I guess that was a bit stressful, but I had no real pain then and I thought this whole paralysis thing was going to be a piece of cake. I whizzed right thru rehab in 6 weeks with no problems and went home to begin my new life in a wheelchair. The CP hit me about 9 months later. It's been a living hell since then.. (5 years)

  4. #24
    Senior Member alan's Avatar
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    I have never deemed myself omniscient enough to claim that someone else's pain is not severe. If a person feels his pain is severe, it is, just as it isn't severe if the person feels it isn't. We all have different tolerance levels - the same pain that my brain feels as severe, Ray Lewis may feel isn't that extreme. Our tolerance also changes with circumstance - severe acute pain is often more easily tolerated than less severe chronic pain, simply because you know (subconsciously, if not consciously) the acute pain is temporary, whereas the chronic pain isn't. I had a high pain tolerance before my injury and the CP, and I still tolerate things like dental work better than many, because that pain is short-lived.

    As for my burning sensations, they're definitely worse than any sunburn I ever had.

    Why do some people get CP, and some not? IMO, same reason some people have complete SCI, some incomplete, and some recover from the injury - plain old dumb luck. Maybe there's a genetic reason, or other decipherable reason, but none has been found yet.
    Last edited by alan; 08-30-2005 at 10:25 PM.
    Alan

    Proofread carefully to see if you any words out.

  5. #25
    Alan,

    "Omniscient" is the right word to puncture it. Once again, your straightforwardness is eloquent, but I don't think you realize how unique your gift of expression is. i cannot express once again what has been disbelieved so many times, by so many intelligent and socially acceptable people, who started to grow fangs when I said my pain was really more than the average person could understand. The problem for many is that we have been beaten down and do not wish to speak words that have consistently gotten us into trouble; ie. what our central pain is really like. I find that most really, really sick ones are either hysterical, or make considerable attempt to do it in a two step fashion. First they attempt to ingratiate themselves into the favor of the listener, THEN, they mention their central pain. I am of the latter variety. Central Pain is simply unbelievable. It was so different that I myself was willing to accept that my symptoms might have some component of psychosis. I did not know what to make of absent sensation and the presence of pain, and the first spine hospital told me plainly there was no such thing. I was desperate to locate a cure. I found if I came right out and told of unbearable burning, it went nowhere. If I first was polite and calm, the physician was much more likely to be sympathetic and to believe that I had some component of pain. Then, when I went to Rancho, it was old stuff to them. I thought of the fawning, self abnegating self immolation that had been necessary to even get to speak to neurologists etc. about pain and now at Rancho, they knew it all, like I had told them the sun comes up in the daytime. I was angry at myself for being duped into being told I was "crazy" and I was also upset that knowledge of it was not conveyed in the textbooks, so that my physicians were in darkness about it. The docs at Rancho had all these kids who had gotten shot in the neck in gang wars, who had CP, and they knew all about it. I remember reading an article by a pain nurse from Univ. of Washington, who said at first she couldn't figure out why nearly forty percent of CP patients giggled when they gave a history. It was because of embarassment. Their story was so unbelievable, yet they were stuck with it. This has all changed in the big centers, thanks to the development of an animal model, which is consistent and predictable, but I actually think very few, if any, are as comfortable with relating their symptoms as are you, which is what makes you so great. You speak unselfconsciously, which is something I have never been able to master in this illness.So yes, you are right. It would be omniscient to speak of pain levels in others. However, if someone wears clothing comfortably, is employed gainfully, sleeps well, and finds their pain eliminated by opiates, it is only natural for someone in agony all the day and night long no matter what the remedy attempted, to think maybe their case is less severe.Yet, these people consider that they have a chronic pain state and in fact, they do. So how do we convey to clinicians when we are in a crisis. I have seen too many throw up their hands in frustration when the doctor does not realize THIS case of CP is really severe. They have been the ones who went to Kevorkian, figuratively or literally. They were people I was trying to encourage, but they would come away from medical care without hope because the docs would not treat them much different than a hangnail. Like you have mentioned, they all felt they needed to be in the hospital, but no one was much concerned. I think this, their muteness, and the doctors blindness is what broke their spirit, so I am hoping we can find something better than just rating our pain from 1-10 so the care facilities have some way to recognize the really severe case, such as your own, and to be a little careful what they say to the person.

    This is not intended to downplay lesser pain which is still very bad. I do not have a solution, but I know of people who have only had their family realize CP was bad by reading the article you wrote at painonline. The CP person can say "I have something like that." Their neighbors say "Oh my goodness, I thought it was like my athlete's feet" or something dumb like that.

    When it gets bad enough, language fails you, and yet somehow we need to be able to get the word "severe" across. It is not that those who are not severe claim to be severe, it is that ALL pain conditions tend to be held in the "not so severe category" which is no way to stave off overreaction in those who give up and end their lives. The word "severe" is worthless, but it is all we have. It is like the mother whose child has meningitis who calls the pediatrician at night and has to convince him that the chid really needs to be seen. The pressing of the mother is one strong clue to the pediatrician that something is really wrong. When someone is so sick they can hardly go to the pain clinic, the mere act of going negates what is going on, seems to give the lie to what is actually true, so we use the word "severe" but it doesn't cover it and moves no one to help us. If our Central Pain were only "severe" pain, we would all be happy, because most of us can handle severe pain. It is Central Pain which is killing us. "Central" sounds even less noteworthy than severe. IMHO. The word severe nearly always attaches to pain and has therefore lost its meaning. What do we use in its place. I think your suggestion that we include duration when considering the power of pain is essential. I also think we need to factor in the percentage of body surface, and other things as well, such as ability to sleep or wear clothing. I know people spending thousands because they don't get a good night's sleep, but in talking to them, their sleep problems are not the agonized, interrupted, broken, nightmarish struggle to lay on the sheets of some with burning dyseshtesia, who are psychologically gutted by a single attempt through the night, which is then repeated for years. How do we describe such people?? People whose bladders frighten them because they forever fill. People such as yourself, whose shoulder blades cause continual agony. Give me a word besides severe and I will gladly use it. Your article works but it is long. Language is supposed to be efficient. I therefore conclude there is NO real language to cover CP. If you have ever seen a lab rat with CP you will identify with it, but there will be no language. It will make you seem more an animal to yourself and the rat more a human. The pain is so bad you find yourself comparing yourself to Jesus, and then you even wonder about that, even as you worry about blasphemy. Do we call this severe pain insanity? What DO we call it? And eventually, do we no just quit talking about it, withdraw into deep isolation and depression and just tell the world to go jump, and God too, some of the time. Then we get to hate ourselves along with the pain. I think we could all use a good psychiatrist. After a year or so of sessions, he will concede that we have severe pain, but what good will that do us? So I think language is a barrier. You have probably done more to solve that barrier than anyone I know, but if we just had one word, boy it would be great for communication. I guess "Severe" is not going to be it. Reserving the word for central pain causee too many hard feelings in those whose severe pain is merely "very bad".

    I remember one lady here who was dying of cancer. She had the catheter in her superior vena cava for pain meds. I asked he how she was doing. She said "not bad". She was dead two days later. Her doctor told me she was in constant pain because the catheter had irritated her neck until she could not bear it and could not sleep. If she had had a word, maybe she could have communicated. I try to encourage her little girl who is now a teenager; and asks what her mother was like when she was ill. Do I say, "Not bad" or do I tell her the truth. What IS the truth? "Give me a lever long enough and I can move the world." Give me a word powerful enough and the researchers will sit up and take notice of CP and find a cure. Being brave about it has done nothing for us so far, so I have lost my admiration for the stoic with CP, even when it is me. It guarantees more agony for others later on. After all, it is only severe pain, so what else is new.

    An old Dutch woman who lives here was in Auschwitz and still has the number tatooed on her arm. She tells me the survivors don't get along, and don't talk to each other because they all disagree on what it was like, the levels of severity, how bad it was and how to speak of it. If one says something, the others say that wasn't the best way to describe it. Can you imagine? Their isolation and confinement did not end when they left Auschwitz. Suffering is personal and lonely. The worse it gets, the more personal and lonely it is.
    Last edited by dejerine; 09-02-2005 at 01:31 AM.

  6. #26
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    This is a great conversation. I have CP and also read the article about stress and found it very interesting. I can't figure out how my situation fits into it though...can you?

    When I originally had my spinal cord injury (incomplete T12 in 1982), I had burning pain on the tops of my thighs but it went away when my sensation returned to normal there. My accident was VERY stressful. I was 18 and suicidal for 4 years. The backs of my thighs are numb and so are my legs from the knees down (my paralysis runs along the same girdle line). After those first four years I matured and grew into a successful woman who used a manual wheelchair to get around. I was proud of how much I had made of my life. I was very independent financially and physically and most importantly pain free.

    During the summer and fall of 2003 I started getting that burning butt syndrome...a year later it was diagnosed as CP. Now I had been going though a rough stressful time during the year before the CP began. What I'm wondering about is did I become susceptible to developing CP during my original SCI or this stressful time around 20 years later because I already had damaged my CNS. The CP has me bedridden and has taken both my physical and financial independence. The CP brought on even more stressful events.

    I would appreciate any feedback...thanks..

    tocker

  7. #27
    Senior Member alan's Avatar
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    I wish I had a descriptive word, but, even if I or someone else came up with one, other people suffering from other types of pain would use it, too, if they felt their pain was as extreme as we feel ours is. We with CP couldn't copyright a word, I don't think.

    I am now going to have someone smash my shoulder blades with a sledgehammer. If they're going to feel broken, they might as well BE broken.

    My abdomen is next on the agenda, after the sledgehammering is done.
    Alan

    Proofread carefully to see if you any words out.

  8. #28
    I was on the back of a boyfriend harley had a nice ride down US 1 to hotel California had one drink and started home to eat dinner, less then one mile from home. I remember the whole accident the car pulled in front of us and I flew over the hood hit the ground on my head that made my back into a puzzle the doctor said I would walk but some how that didn't happen. Bill went with the bike broke toes, ribs and is not with me. He found the bottle so that is his home sad very. The guy was drunk that hit us. i spent 10 days in the hospital 30 days in Rehab then in a brace for 18mos done very well on my own. Got no money because he had nothing to give or take so just jail time. He is spenting 11yrs I wish him the best. I don't hold any body at fault on the accident it just happened so is life go on my merry way.

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