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    Neuropathic pain....what is it?

    Our son has been complaining about having a lot of pain in the back of his legs, hamstring area, and lower back while he is sitting in his chair as well as laying on his back in bed. I'm a massage therapist so he gets at least 1, one hour massage every day as well as stretching and range of motion exercises. He describes his pain as a burning, pounding kind of pain. Is this neuropathic pain? Exactly what is neuropathic pain? He does have al ot of sensation type of feeling all over his body, and he also has reflexes. But unfortunatly he does not have any motor below his neck. Anyone out there that can explain what is going on? Thanks

    #2
    hi ddj--

    unfortunately, there are lots of people here who suffer from neuropathic pain, and I'm sure some of them will chime in.

    Here's what I know from watching my husband deal with it for the last 5 years:

    It's usually triggered by light touch, like soft stroking.
    It's hard to medicate, but not impossible. Bruce takes gabapentin (same thing as neurontin) and has also experimented with lyrica.
    It's a good idea to stay ahead of it . . . if he forgets to take the meds, it can suddenly grab him, and then it takes awhile to get it to quiet down again.
    It can change in intensity over time. The first couple of years, he was constantly having to be vigilant w/ the meds, and there were still times when it got the better of him. Over the last year or so he's been gradually cutting back as much as he possibly can and is down to about a third of the original dose.

    (I'm typing this and thinking, omg, I'm speaking in years here. Years of living with this already gone by . . . it's weird. I remember when I first came here, how impossible it seemed that we would ever learn to deal with everything.)

    Anyway, I'm sure others will jump in and tell you the exact neurological mechanism that causes the pain--my impression is that it's the sensory version of the thing that causes spasms and spasticity--partial signals through the injury site that the body misinterprets.

    Hope this helps, and btw, good on you for the massage and range of motion. Your son is lucky!

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      #3
      i'm pretty sure a mod will move this to the pain forum. oops! hi kate! how ya doing? i'd like to get together again for dinner sometime!

      neuropathic pain can result after injury, damage or trauma to the central or peripheral nervous systems. burning, pins and needles, abdominal pain are a few common descriptions of the pain. it sounds like your son, unf., may be dealing with neuropathic pain.

      an online source you may want to look at is painonline. the pain forum moderator (david berg) runs that site.

      http://www.painonline.com/
      Last edited by cass; 16 Jul 2006, 10:19 PM.

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        #4
        Thanks Cass, I realized after I posted in this forum that I should have put in under pain. Thanks for the link though.

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          #5
          My husband Bill has this type of pain as well and Kate's description pretty much covers how I would describe it. He's on a fentanyl patch and oxycontin which dulls the pain but he says its still always there just under the surface ..... the meds make him sort of flat and spacey but the alternative is just not an option. We juggle meds always searching for the right combination. I used to use my Reiki on his shoulders and back and that did help somewhat but he (and I) weren't patient enough .. a regular massage has always been one of the most beneficial pain management techniques for Bill not just because it doesn't come in a pill but because of the mental benefits it brings with it. He had someone come to the house once a week until just recently but she had to stop for awhile because she had a baby ... we are looking forward to her coming back. They usually visit and he vents about his pain and she often will suggest stretches or exercises etc. for him to do between visits ... "her" word carries more weight than anything I might suggest ... whatever works I say !


          Obieone
          Last edited by Obieone; 17 Jul 2006, 9:21 AM.
          ~ Be the change you wish to see in the world ~ Mahatma Gandi


          " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
          Jane Siberry

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            #6
            I found this description of naturopathic pain from Dr. Wise here earlier, here is a link; /forum/showpost.php?p=293124&postcount=4

            I have some of this pain, not to severe though but I take Neurontin (gabapentin) for it, and for me it helps, I take 600mgx3/day. Don’t know if this will help for your son though; check it out with a physician.
            Last edited by Leif; 17 Jul 2006, 9:43 AM.

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              #7
              Originally posted by cass
              an online source you may want to look at is painonline. the pain forum moderator (david berg) runs that site.

              http://www.painonline.com/
              Thanks for the reference Cass, but my website is slightly different, http://www.painonline.org The .com site has much in common and is "sort of" a sister site, but they are seperate.

              DDS, Dr Young's post is a great description of neuropathic pain. My short explaination when someone asks me what neuropathic pain is is this; Damage caused to sensory nerves that causes pain sensations. Perhaps the easiest way to explain the sensations is that they don't feel like anything "normal". The burning sensations, the hypersensitivity, the "lightening", shock feelings...neuro pain can take many forms. Perhaps this page on my site with descriptions from folks with central pain, which is neuropathic pain caused by damage to the CNS, will help a little.
              http://www.painonline.org/description.htm

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                #8
                DDJ, one more note. One possible component of central pain is neuropathic pain that can manifest as muscle pain. Some people with this benefit from massage that stretches the muscle spindle by using deep pressure without rubbing. See http://painonline.org/muscle.htm

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                  #9
                  Thanks for all your responses. I think I have a better understanding now. Let me ask you this, we were told that Adam would never sweat below the site of his injury. However, since this pain started in his legs he has been sweating all over! Do you think it is related? Also, yesterday was really the first day that his pain was pretty bad, but he didn't have a single spasm. He usually has bad spasms all day long. Weird things are happening, any insight?

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                    #10
                    sorry, david, i don't know why i always make that slip. and i was just at your site (the org one) the other day.

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                      #11
                      No problem Cass. Just to make it more confusing, 10 years ago the content now on my .org site had it's origins at the .com address. About the time I took things over, the .com address got tied up in a mess where no one could transfer or move it because of some stubborn headaches caused by Network Solutions and an old, merged/obsolete ISP address listed on the contacts for the WHOIS for the address. I kept the site alive by purchasing the .org address, then a couple years ago someone finally freed the .com address and put it to work. There's a lot of good content there, too. Hmmm, I think I'm just confusing things more by trying to explain it, lol.

                      DDJ, I'm a poor one to try to explain exactly why he's sweating, but yes I can picture this and I would guess it's related. Short, layman's explanation is that it's related to a confused nervous system.

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                        #12
                        My sort-of pain diary (whinefest) is at the painonline.com site. "Reality CP," they call it.
                        Alan

                        Proofread carefully to see if you any words out.

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                          #13
                          just an FYI,to sweat or not to sweat is usually related to the sympathetic nervous system,and also possibly,with certain syndromes brought on by SCI,the spinothalamic tract.I have a damaged SNS and believe me,I have definite areas where I just don't sweat at all and others where I really make up for that by "over sweating"?I am talking waking up in the middle of the night just totally completely saturated/swimming in it but only on the L side,as my R side from the chest on down,i just don't,at all due to the SNS and also a damaged spinothalamic tract that caused brown sequard syndrome.so i kind of have a combo of crap on that side.

                          also due to the SNS damage,I developed horners syndrome which among other things has made me lose the ability to sweat but only on one side of my face.

                          but there seems to be that definite " compensation" thing going on in the parts that still DO sweat that keeps it on overload.I have to sleep on a stack of towels that I can remove one by one when I have to get up in the middle of the night for the potty runs.also a stack of fresh jammies really comes in handy too.it really all just sucks actually.

                          But David really summed it up best with the "confused nervous system".the one big thing i found out once my spinal cord was damaged is that just about anything and everything is possible neuro wise,once the damage has been done.it is one big adventure of constant fluctuating neuro wierdness.no two days for me anyways,are ever the same.

                          Just exactly how was your sons spinal cord damaged and what specific areas were actually damaged,this could help shed some light on why this may be occuring.marcia

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                            #14
                            DDJ, I was just thinking of some emails I exchanged several years ago with a woman working on a her masters in PT who was doing a thesis on using PT to treat central pain caused by stroke. Different cause, but the pain is pretty much the same thing, damage to sensory nerves in the CNS. She was from Belgium and I never got a copy of the thesis, but of course I wouldn't have been able to read it anyway. It would have been interesting to look over. I might still have the emails around somewhere on a backup tape or something if I really dug, but I'm confident her address wouldn't still be valid, I believe it was from her university.

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                              #15
                              Hi
                              Just by 2 bobs worth. I am a c5/6 incomplete 12yrs post.Up until a couple of years ago I suffered from shocking nerve pain (what it is called here in oz)mainly on my butt, back of thighs and my lower back, all area's that were in constant contact with my chair.My spinal Dr finally put me on neurontin and I now call it my wonder drug, it has not taken the pain away completely but I would have to say that it is 80% better and has made life a lot easier for me.
                              In regards to the sweating, I can still sweat in the heat etc,but for about 2yrs after my accident when I way lying down I would sweat like anything, drench my pillows everynight,bed linen etc, as soon as I stopped taking baclofen it stopped within 2 or 3 weeks, so not sure if that was the cause, but stopping that for your son probably isn't an option as he sounds like he needs it for his spasms.I do know that there is a medication that you can take to help with severe sweats but not sure if it would interact with any of the meds that he is currently taking.
                              SCI's are a strange thing, no two people are the same, what may work for one won't always work for the other, it's usually just trial and error.
                              Oh and just another thing my nerve pain is always without a doubt worse in summer.
                              I hope that your son finds some releif soon.
                              W4Me

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