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  • Originally posted by LindaT View Post
    Forgive me for chopping your quote Arndog.
    The pain forum makes my husband feel like he is not crazy. I read it to him and he nods.
    Your "hope" is realized and I thank everyone who writes.
    I once went to the ER because of a UTI, but I think being admitted into the hospital simply because of my heart rate did a lot to convince my dad that I wasn't bullshitting about anxiety attacks.

    I even told the hospital staff that my fast heart rate is merely due to my anxiety, but they often suggest to me that people are afraid of hospitals and that might be the reason for my heart rate. It almost makes me want to retort, "Why does my heart race at home?"

    I empathize with people in this forum because I know what it is like to have a condition that people question and it angers me.

    Comment


    • Since I hang around here a lot, I'd just like to re-enforce what Arndog has said.

      Scorpian, I wish you and OJ and many others would post more here. It's good to hear new/other ideas from those with the same kinds of problems.

      I often worry about OJ, knowing that she has the ugly pain too, and is working so hard in school. She amazes me with her strength to study! And I know she goes through some tough times, and then gets right back at it and gets caught up! Awesome! It's actually made me wonder if I could get through a few classes and be able to concentrate......but I guess at my age, it does'nt really matter too much. Besides, I've never been able to figure out what I want to be when I grow up. lol

      I know a couple of people that suffer from anxiety, not much fun. Painful in its own way.

      Linda, I hope the posts here help your husband in some way. Sometimes just knowing you're not the only one dealing with similar problems help. I thought of that tonight when my husband was coughing earlier this evening......it felt like I imagine a lightening bolt would feel everytime he coughed! I felt like screaming....STOP! Not sure he'd understand that one, I don't think I've ever talked about it with him, or anyone, except here. Sounds kind of crazy to most people.

      Quadvet, good to see you around........hope you're doing okay!

      Comment


      • Originally posted by smokymtn memories View Post
        I know a couple of people that suffer from anxiety, not much fun. Painful in its own way.

        Linda, I hope the posts here help your husband in some way. Sometimes just knowing you're not the only one dealing with similar problems help. I thought of that tonight when my husband was coughing earlier this evening......it felt like I imagine a lightening bolt would feel everytime he coughed! I felt like screaming....STOP! Not sure he'd understand that one, I don't think I've ever talked about it with him, or anyone, except here. Sounds kind of crazy to most people.
        When I drop something or there is a sudden sound he describes it as feeling like an electric shock. When someone here used the same description it helped him to know it is not just him and also helps me understand even though I never doubted him.
        We have not been able to go to a movie because they can be so loud.

        Comment


        • Originally posted by LindaT View Post
          When I drop something or there is a sudden sound he describes it as feeling like an electric shock.
          Linda, the same thing happens to me with loud and/or surprising noises - my startle reaction is off the charts, and I've learned that this is common with MS. Also, when my husband appears in the room and I haven't heard his footsteps, I invariably gasp, even though I know there isn't anyone in the house but the two of us; it's involuntary. And YES, a feeling like an electric shock goes through me, so tell Dave I can relate!
          MS with cervical and thoracic cord lesions

          Comment


          • Originally posted by arndog View Post
            I would like to make a few observations.
            This pain forum is not about central pain. It is about all and any pain with an emphasis but not limited to pain associated to SCI. It welcomes comments from those with MS, Cerebral palsy, and all other neurologic conditions. For that matter, it includes any pain from anyone although there may be better places to get information and support.

            It includes pain from arthritis and peripheral neuropathic pain. It is about mild, moderate and severe pain. Not just severe pain.

            If there is a contest about who has the most pain, this would be an event that I hope I lose and come in last. There are people who tend to post that their pain is the absolute worst this side of the Hudson River. I do think this ideation increases their sense of isolation. My recommendation is to let them say express this and not take it to heart other than to be compassionate to them. Their comments about your condition is no reflection on you.

            I would not look for validation on the internet for how you feel. If you find it, great, but it won't be from everyone. If it bugs you that there are some posters who will say your pain isn't that bad and that somehow bothers you, I would contend that you are searching for validation on the internet and may get disappointed. But for every 'vocal' participant on this site, there are 10x the number of people who read this forum and your posts and feel compassionate and benefit from your sharing of your experience.

            I guess it comes down to understanding why we post such intimate details of our human experience. I find that most people do have a good heart and, for me, I post with the hopes that I help someone who is isolated and doesn't have a connection with people outside of the cyber world with similar pain problems. Since I feel this isolation personally, I have repeatedly been touched this way by people's posts time and time again and even on this thread. I just wouldn't count on the internet for validation, you may get the opposite from some posters. You need tough skin.

            I am interested in how everyone manages chronic pain with medication, distraction, philosphically, and non pharmacologic modalities. I learn from everyone's posts.

            Each forum has its regular frequent posters but it shouldn't dissuade folks from sharing how they deal with pain. It shouldn't establish a 'forum culture' that makes one not want to share. So I am hoping that those who have expressed reasons for staying away from this forum will reconsider. I, for one, will benefit from your experience and I hope that somehow makes you feel better !

            Thanks to all who participate !
            Well said Brother !

            Be Big,
            AMAC
            L4/L5 CES

            www.DRAFT.cc
            http://www.facebook.com/profile.php?id=1024602574

            Messages from Alan Maccini and are produced utilizing voice recognition software. As a result of this on occasion a misrecognition of a word will occur and while spelled correctly will result in an unintended word appearing. We apologize for any errors.

            Comment


            • Originally posted by smokymtn memories View Post
              Since I hang around here a lot, I'd just like to re-enforce what Arndog has said.

              Scorpian, I wish you and OJ and many others would post more here. It's good to hear new/other ideas from those with the same kinds of problems.

              I often worry about OJ, knowing that she has the ugly pain too, and is working so hard in school. She amazes me with her strength to study! And I know she goes through some tough times, and then gets right back at it and gets caught up! Awesome! It's actually made me wonder if I could get through a few classes and be able to concentrate......but I guess at my age, it does'nt really matter too much. Besides, I've never been able to figure out what I want to be when I grow up. lol

              I know a couple of people that suffer from anxiety, not much fun. Painful in its own way.

              Linda, I hope the posts here help your husband in some way. Sometimes just knowing you're not the only one dealing with similar problems help. I thought of that tonight when my husband was coughing earlier this evening......it felt like I imagine a lightening bolt would feel everytime he coughed! I felt like screaming....STOP! Not sure he'd understand that one, I don't think I've ever talked about it with him, or anyone, except here. Sounds kind of crazy to most people.

              Quadvet, good to see you around........hope you're doing okay!
              Originally posted by LindaT View Post
              When I drop something or there is a sudden sound he describes it as feeling like an electric shock. When someone here used the same description it helped him to know it is not just him and also helps me understand even though I never doubted him.
              We have not been able to go to a movie because they can be so loud.
              I'm sure there's a thread about this somewhere. Lots here get the electric shock when startled. I get a terrible shock feeling in my bum when I'm startled. Mine doesn't hurt but it feels horrible.

              Comment


              • When I was walking, I use to fall down. One time the tram made the ding ding because the driver thought I walked to slowly and I fell down in front of it. My friend was dragging me out of the street.
                When I was in the kitchen the children were whispering before they came in because if they came to quickly, I felt down on the floor. It was some kind of funny but it happened enough when it was the wrong time.

                So I think it is a lot of us who reached of loud or suddenly sounds, like Keps said it has been a thread about it before, even a poll I think.
                TH 12, 43 years post

                Comment


                • That electrical jolt is kind of a whole body thing for me. Seems like some days are worse than others.....but I've never been able to figure out why??

                  Does the temperature of the room affect the intensity of your burning? I've discovered just in the last year or so, that even though I don't feel hot.....if the temperature inside or out goes up past 70 - 72 degrees my feet and hands get bad. The intensity will go back down when I cool off, but it takes a little while. It makes it hard for me to do much outside for very long.

                  Last year at a cookout at my sister's, they got out the fan and put it on the porch for me, and it seemed to help.

                  Comment


                  • Pre-SCI, loud noises would cause my body to spazz from the cerebral palsy, but there was no pain. Enter SCI and a loud noise or being startled causes what I refer to as shock/pop. It feels as though I'm being electrocuted (shock) and it needs to escape my body. The "pop" is when the electric feeling hits its peak.

                    I. detest. it.

                    Anybody else get a feeling like you've hit your funny bone in your elbow only you have not hit it and it is totally unfunny? I don't feel my elbow yet I have the sensation my funny bone has been hit gone exponential.

                    SmkyMtn (Hey, T!), heat is a killer for me. It feels like I have a concrete burn/my skin has been pulled off and exposed to sand paper the hotter environmental temps go. I turn into a slug, too, and lose my energy if I stay hot too long.

                    I do the same thing when I run a temp. It's often my first sign of having an infection. There are times the concrete burn feeling hits a day or two in advance of whatever it is being more obvious/identifiable. With me it's either UTI or my lungs each time.

                    I'm klutzier than usual, too, although I've never known if it is the actual temperature/illness or the "distraction" (inability to focus) due to increased pain or a combo or an unrelated coincidence. My vote goes to a combo of being sick/overheated and also having difficulty focusing due to increased pain.

                    P.S. I also get the shock/pop if I turn my head in certain ways or my neck is in certain positions. Big unfun.
                    Last edited by LaMemChose; 03-21-2011, 12:44 AM. Reason: to add the p.s.

                    Comment


                    • Hey La Mem! Good description! Shock/pop! And, yes....I also have the same problem with my head/neck! And for that split second/s it is way unfun!

                      Since you get that one too.....how about one.......kind of like a muscle cramp in your throat/neck and it does'nt go away until I drink something......first time I got that one, I thought I was having a heart attack!

                      It's funny how you get these strange little things happening to you....and because no one ever talks about them, you think you are the only one it happens to!

                      As far as the fatigue after being overheated......yes, me too. But I've noticed fatigue is a problem after doing just about anything, for me. It can be from going to the doctor's to doing the laundry. I'm whipped when I'm finished.

                      Comment


                      • I intermittently get a sharp, painful cramp on one side of my neck and burning at the back of my throat. The neck shock (L'Hermitte's sign) and fatigue with heat are constant issues. I don't notice heat making burning pain like the "fire socks" worse, but it causes me to lose strength to a really alarming degree (typical for MS), and I've heard that cold has the same effect on some people.
                        Last edited by Bonnette; 03-21-2011, 06:32 AM. Reason: addition
                        MS with cervical and thoracic cord lesions

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