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    #16
    tocker--thanks for seating site, my new chair should be in next week and I'm gonna get the PT and chair man to look at this new cushion. I think my problem was/is the 40+ work hours with rarely a lunch--I just didn't boost enough. I'm trying to work up some now that will yell at me every 30 minutes to boost no matter who I'm talking to or what's going on.

    I have tried so many drugs for the burning I can't remember them all, but I may not have tried this one--amitriptyline. It's interesting that your burning eases when you lay down and mine gets ten times worse. I have been laying in bed for 4 days now and I just try to sleep as much as possible so I don't feel the pain...
    EM

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      #17
      Tocker,

      Did you get your seating eval at Good Sam? My PT really pushed the Ride cushion as well. Unfortunately, it doesn't work that well if you wiggle around a lot in your chair. I'm constantly scooting back and side-to-side, which negates the benefits of the Ride cushion. I very nearly was fitted for this cushion because the PT "assumed" that a C6 person sits completely still all day long. Not so.

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        #18
        thanks--I to do a lot of moving--hadn't thought of that...
        EM

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          #19
          Em,

          If the amitryptilline (elavil) has too many side effects when you try it, desipramine, another tricyclic antidepressant, has fewer side effects and also helps some people with neuropathic pain.

          Alan

          There's a fungus among us, and I'm not lichen it!

          Nerve Center Telnet BBS - tncbbs.no-ip.com
          Alan

          Proofread carefully to see if you any words out.

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            #20
            alan -- thanks, elavil I've tried and it did nothing...
            EM

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              #21
              Em...
              It is real interesting that we have different responses to laying down. I have had every test and there is no tissue (or any kind) of damage around my ishial tuberosity and even the docs cannot figure out what the screaming pain when I sit is about. You mentioned doing more "boosts" I think that will be helpful. I also now believe that my problems resulted from getting too focused (okay, like in a trance [img]/forum/images/smilies/eek.gif[/img] ) on my computer screen/answering the phone and not taking care of my body. It is so easy to let that happen. One more thing...hope you are not offended by this (some are I have discovered) but have you tried medical marijuana? It can be VERY helpful with the burning pain (plus it also lightens my mood and I even find myself laughing). That mood change is healing in itself...my husband has come into the bedroom after hearing me laugh at something on the TV, crying tears of joy because it has been so hard on him to see me so somber (or grumpy) day after day in horrible burning pain. I'll being thinking about you and hoping you get lots of sleep and anything else that helps you get through the night and day.


              Clipper...
              As a matter of fact I was talking about Good Sam [img]/forum/images/smilies/tongue.gif[/img]. I am glad to get your feedback on that cushion. Being an incomplete T12 I do move around alot too. Most of my 23 years have been spent sitting on a foam cushion because I was in and out of the wheelchair all the time. I can't see me being able to sit still in that easy rider cushion either...thanks for the feedback...I guess the search for the right cushion to get me out of bed is still on. By the way...are you happy with the cushion you chose?
              How long have you been at the Rehab Institute? I was first there in 1982 and many years later I find myself needing their services again. It was a great place (down on NW Kearney) and staff way back when [img]/forum/images/smilies/tongue.gif[/img].

              Alan...
              I'm going to look into desipramine too. I have never heard of that one. Thanks


              Terry

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                #22
                Terry,

                I did my initial rehab at Good Sam back in 1989 and only recently moved back to Portland. I had a seating eval in December. RIO certainly has changed a lot since I was there - better facilities, more equipment.

                I've been using a Roho cushion for about 10 years and have been pleased with it from a pressure-relieving point of view. I was looking to get something with a little more lateral stability since I have lower back pain sometimes. The Ride cushion looked okay until I talked about it with my DME provider.

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                  #23
                  tocker -- not offended by mary jane suggestion, I would do just about anything legal that would still allow me to function to stop this. I am missing out on so much of daughters life because of the pain. I sat through her showing goats two weeks ago and it was all I could do to make it--that was the first one I had been to, missed four. I know a couple of other paraplegics and they have none of this pain and I don't think even they understand...
                  EM

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