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    need to wear a shirt

    I have got to find something that will allow me to wear a shirt for more than a couple of hours. Shirts exacerbate the pain in my upper back, which is bad enough without any increase. I've even tried being wrapped in an ace bandage, but pressure stopped providing relief years ago.

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"
    Alan

    Proofread carefully to see if you any words out.

    #2
    Alan, I wish that I knew what to suggest. Wise.

    Comment


      #3
      Is there anything that would deaden the sensory nerves in your back skin to the point where they wouldn't "feel" the shirt?

      Calico

      Comment


        #4
        Alan,
        Does it make any difference at all what kind of material the shirt is made from? You know, like silk, or with a silk base layer under another shirt. I'm asking because I've heard from others that the smoothest possible matterial can help some, even more so than the softer materials, such as Egyptian cotton.

        Comment


          #5
          or maybe try ultralight capiline shirt, silk weight its called, very light may be able to use as a liner?
          cauda equina

          Comment


            #6
            Hi Alan
            Cortizone cream seems to work for me on the neck and lower back. Elastic waist pants and the little name tags on shirt collars irritate me.I was recently advised to use a wood beaded seat cover thingo. taxi drivers use them. They are used to reduce heat build up. Unlike lambs wool that traps heat and sweat. Hope this helps you have enough to deal with.

            Pops

            Comment


              #7
              Material doesn't matter. Tight, loose - all the same.

              Tried all sorts of creams, but, since the shoulder blades are below the C-5 dermatome, they make no difference (just like anywhere else on my body below the level of injury.)

              Alan

              "Was it over when the Germans bombed Pearl Harbor?"
              Alan

              Proofread carefully to see if you any words out.

              Comment


                #8
                sounds like you need like a umbrella type thing to hold the material off your skin
                cauda equina

                Comment


                  #9
                  I need something. Preferably, something that reduces the burn and sensivity enough that I can wear a shirt and get my butt out of here now and then.

                  Alan

                  "Was it over when the Germans bombed Pearl Harbor?"
                  Alan

                  Proofread carefully to see if you any words out.

                  Comment


                    #10
                    Alan, I'm on a CPS board and someone there was going to be using a ketamine cream that is made in Florida. I'll try to get more info if you think it might be worth a try. Are you on that Board? Maybe I've seen you there.

                    Also, I stumbled on to something called doxepin hydrochloride cream that might be helpful. Maybe you can find something about it on the internet.

                    Calico

                    Comment


                      #11
                      Dear Alan,

                      This has surely got to be an unusual website, with people asking if they might wear clothing, through some means.

                      Years ago a lady told me how she had to take work as a waitress to support her husband through school. She was required to wear a short skirt and received comments she thought were degrading and treated her as unintelligent. I never thought too much about it until CP came along. The ability to wear less clothing than is appropriate causes tremendous discrimination. For my casual activity I make myself more comfortable, not others.

                      It causes tremendous anger also, and laughter, and you name it. Even my doctor remarked at it, which was not comforting, since it was apparent he did not understand CP.

                      No matter how uneducated or how much of a loser is the commentator, if you don't wear the right clothing, you are the target of frequent, open, rude remarks from any thoughtless person. The person paid to GREET YOU at the discount store will laugh and make comments. If I say I have a brain disorder, they laugh harder. If they laugh too hard, they get my glutamate lecture, which really upsets them and makes them call for security. I no longer mind, but my children do when they are with me. We are all equal under the law, provided we are properly dressed.

                      I wrote two letters to the Dept of Justice, asking them to draft rules, under the Omnibus disability act, to allow CP patients with the problem of abbreviated clothing in public places like courtrooms. I received no reply whatsoever. I made phone calls, and they promised to report this but nothing was ever done.

                      The inability to wear clothing makes a huge difference in life. I am sorry to hear you make a poignant request for what everyone takes for granted. We must wear clothing to go into public, but wearing it, if we remark on our inability to do so, people say, "But you are wearing clothing right now". This is in the same category as people who say, "But if you are in severe pain, why are you smiling, (or "not crying").

                      These things are a mystery to myself, how one should proceed. I still like the post at Pain Forum from months ago, when someone said if the average person woke up feeling like he does with CP they would call an ambulance immediately and have themselves admitted to the hospital.

                      Any clothing for me must be extremely slick, hard finish, non heating type of stuff, or else fit VERY loosely, so as not to touch skin of the extremities. Perhaps a local church or public agency would sew a hooded thing that would hang from your head and touch your upper body very little, like a poncho. I cannot remember if you have CP on your face. If so, this would not work.

                      Just trying to be helpful. The lidocaine patches tend to help against evoked pain but it is only safe to use three at once, and they are very expensive. Three patches would cover about 60 square inches which is not going to do much good. It is mysterious how the skin can still burn even with the patches--the pain must be in the thalamus I suspect. I can be totally numb from lidocaine and still feel that burn, and if I concentrate very hard, it seems the burn is coming from somewhere else than the skin area which is numb. I guess it must reside in my brain.

                      I will write another letter to the Justice Dept in your behalf. The committee to enforce the omnibus act still doesn't get it at all that they need to take steps in our behalf. NASA developed a suit with a built-in air conditioner. It blows air between skin and fabric, but it costs 25,000. I doubt whether Medicare would even consider it, and don't know if it would help or not.

                      Maybe you could write to one of the high priests of placebo and ask them to send you a placebo shirt.

                      Placebo is so far below what we have to face with CP, it is an obscenity to mention it. Sort of like handing a picture of Kellogg's cereal to someone starving in Auschwitz.

                      [This message was edited by dejerine on 02-25-04 at 04:00 PM.]

                      Comment


                        #12
                        I've tried doxepine cream, ketamine cream, ketamine nasal spray, and the lidocaine patches (among other things.) I still have those four here.

                        I need a shirt so I can get outside when the weather gets more springlike. I'm not even focusing about going places - that will likely require some reduction in back and abdominal pain level.

                        This dang pain and scoliosis is depressing, and getting more so.

                        Alan

                        "Was it over when the Germans bombed Pearl Harbor?"
                        Alan

                        Proofread carefully to see if you any words out.

                        Comment


                          #13
                          Alan

                          Have you tried a loose cotton tank top?

                          Mary

                          If I can see it, then I can do it. If I believe it, there's nothing to it.
                          1FineSpineRN

                          Comment


                            #14
                            Connecticut is going to provide wigs for cancer patients. The news article said:

                            "When you're not wearing a wig when you lose your hair, its an open indication of illness.We think it's a vital part of self esteem... You go through so many feelings when you are told you have cancer_shock, fear, bewilderment. I certainly went through outrage This was the only time I felt insulted."


                            Alan is talking about something to permit him to go into public. I think the medical system should credit this. No one wants to go around looking hairy, or weird. Germany has provided wigs and twice a year cleanings for nearly twenty years, for everyone.

                            I don't think people realize what a huge contribution David made by gathering Round II of the Central Pain surveys. It is his work, which put central pain problems in the forefront. The different aspects of Central Pain, such as the social problems, can only be addressed through database gathering such as David did and is now being done at painonline.com.

                            The cost of wigs in Connecticut is estimated to be 1/2 million dollars or more. Waxman's group at Yale in Connecticut is said to do about 1/3 the important pain research in the nation, yet he will have less than this amount to study pain. More than 100 million dollars will be spent in Connecticut on pain (including anesthesia) per year. It seems foolish not to fund pain research, since we can END it.

                            As you can tell I am an activist. And I sure don't like to see Alan struggling to find a way to go out into public. The little motorized wheelchairs cost 7,000 each, and Medicare buys those for elderly who can't get around, all the time.

                            Why shouldn't they buy Alan a suit where air blows the fabric away from the skin, so he can at least contemplate going somewhere. I believe we neeed that pain bill that is being considered in Congress which Calico has emphasized.

                            Pain sufferers unite. We have nothing to lose but the public's pain, even if they don't have it yet.

                            THANKS AGAIN TO DAVID BERG. His work is greatly underappreciated by us. If you haven't filled out the survey at painonline.com, please do so.

                            In the meantime I intend to go around looking like the big fat hairy greek bachelor, until the public gets so sick of seeing me that they fund pain research. Hey, it could work.

                            Comment


                              #15
                              we used to use compressed air from the scuba tanks to inflate and equalize our dry suits when cold water diving, the suit would blow up like the michelon man eassily.only problem is the shirt would be hotter than, a fan type circulator would be cooler . like a hawaiian aloha shirt with a nehru collar.
                              be better to stop the pain though...
                              cauda equina

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