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Thread: Please take this Pain survey!

  1. #1

    Please take this Pain survey!

    There is a new survey online at PainOnline for central pain patients. Please come take the survey at http://www.painonline.org/survey.htm.

    Central pain can result from any condition where there is damage to sensory nerves in the central nervous system. Generally this means any damage from the thalamus on down through the spinal cord. Any spinal cord injury, of course, can cause this sort of nerve pain.

    Every response will help add to the understanding of central pain syndrome. Please help by participating!

    Thank you,

    David Berg
    PainOnline webmaster
    http://www.painonline.org

  2. #2
    took it david, ty. altho made almost no extra comments. pain bad tonight.

  3. #3
    Oh cass, I'm really sorry to hear about your pain. I don't mean to pressure anyone to do it "right this minute." I'll have the survey up for at least a month or so. I haven't really decided how long I'll wait before I yank it offline. Perhaps even a couple of months.

    While I'm hardly saying you have to, If you feel like you'd like to try adding comments sometime, feel free to go back to the survey sometime. It might be convenient if in the first comment box you start by mentioning that you're just working through to add comments, as a heads-up. I can match the surveys by your email address, and if you wish to re-fill out your answers, (you don't have to) I'll just use the most recent version. Either that or I'll combine your comments with your previous time through the survey.

    I want to personally thank you for filling out the survey. And I sincerely hope that your pain comes to a more manageable level right away.

    David Berg

  4. #4
    Senior Member Joe B's Avatar
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    Problems submitting reply

    David,

    I tried several times to submit a reply for the survey but kept getting an error message that my email address was improper. I tried to sort through the html version (the error message said to)but couldn't see a problem. Can you or a tech check on this?

    Thought the survey was well developed, might have put more information about the various types of pain though that could have been confusing.

    It would be good to be able to associate the conditions that cause central pain, SCI, traumatic brain injury, ischemia of the spine and to be able to differentiate them from other similar pain but with distinctly different causes and methodologies.

    I dont believe that the pain of diabetic neuropathy is caused the same way but has a similar description. i.e. burning sensation of the feet and lower legs. Same with individuals with clotted veins and arteries in their legs. They have burning nerve pain but the cause is peripheral. SCI and TBI pain is burning but is central pain involving the thalamus (probably).

    I have seen other sites where people have gotten relief from large doses of vitamin B12 for burning leg pain not caused by SCI or TBI.

    Joe

    Joe B

  5. #5
    Joe B, thanks for the word that there's a problem with submitting the surveys. It's odd though, because the place where you enter your email address is configured as a simple text field, not one that's supposed to tell whether or not you entered a valid email address. I'm afraid I don't have a tech to lean on right now, but I can try sending an email to the service whose script I'm using for form submissions to see if they have any ideas. Unfortunately, I don't have a tech I can lean on for this; it's a solo effort.

    I'm afraid my best suggestion for the moment is to try again, but I know that can be a pain because you only discover that there's a problem after you've gone to the effort to fill out the whole survey. I'm still receiving back responses as of this afternoon, so I know people are still getting through. I just worry about the possible responses I'm losing to technical problems such as you are describing.

    I agree that diabetic neuropathy is not central pain, it's a peripheral neuropathy. While I can't make a diagnosis via email, I've tried to include enough information in the various questions to help differentiate between peripheral neuropathies and central pain. I focus on classic symptoms of central pain, and as you suggest, I'd like to be able to identify different ways that central pain manifests in people with different conditions. I've only received a couple of dozen responses so far, but I'm already starting to see some possible patterns along this line. It took more work than I anticipated beforehand to come up with a series of appropriate questions and I'm hoping that these serve me well. I had some good input from a couple of medical sources familiar with neuropathies.

    One thing I'd love to do is to bring to people's attention that central pain crosses many disease and illness boundaries and it's often the more severe symptom that these patients must endure. Take a look at the 4th question of the survey for an idea of the range of conditions suffering from central pain; SCI, MS, stroke, arachnoiditis, syringomyelia, chemical exposure, radiation exposure, etc. If people from all of these groups joined their voices together they would have a much more effective voice to advocate for pain research.

    Thank you for trying to take my survey. I promise that I'll check into the problem you mentioned and I hope that you'll return to try again sometime. There's no urgent rush, I'll leave the survey up for awhile. But please try again; every response matters. Previous surveys and studies of central pain have depended on a very limited number of patients. I hope to have far wider feedback than anything accomplished in the past.

    David Berg

  6. #6
    Joe B, I think I just found a way to turn off all error messages like the ones you received. Hopefully, this will take care of the problem. *Please* let me know if you still have any problems!

    Thanks!

    David Berg

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