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I'm tired of this #$%&-ing pain!!!!

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  • Originally posted by Garyis View Post
    Phillis, you didn't do anything!

    This pain that we all here live with just is. It is what we got...

    When the (my) burning pain reached the point where it was 24/7 and real sleep became scarce, I asked my self "now what?" No answer...

    But upon a closer look I saw that it is my kids that keep me strong, stronger than I ever thought I could be. If it were not for them I'd be seriously considering checking out. I need to be here for them, and I will.

    Be here for your girls, what else to say? I wish that I could help, but I don't have an answer.

    Yep Gary.... My kid has been my inspiration to continue going ever since March 12th 2006 when I hit the fucking ground!!!!
    L1 Complete - Injury 3/12/06 - Grateful to be alive!!!!

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    • Loved ones help, but sometimes it just isn't enough. I'm tired of the pain, and sick and tired of the doctors and all of the medication. It gets old.

      I want to be me again......

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      • So sorry to hear that you guys are having some much pain, i have stop taking pain meds about 6yrs ago i am t 10 complete ....I just muster up my courage and dont even think about the pain....I work full time as a dental surgeon so i am always busy and i try to keep my mind active..Work has been a great therapy for me, i no longer get depress,nor feel lonely and i try to live my life just as it was before my injury...

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        • i was back on super f#@k days this last week. one think that is different with me is that stayingin bed makes the pain usually worse. When i lay down at nite i need to medicate as soon as i get in bed, usually within 10 minutes of being in bed my toes start the fire or stinging an downhill from there. If i medicate i can usually qwell the burning , but may times i will fall asleep and wake up by the pain within an hour , sometimes two hours.
          I can walk , so i am lucky there. i did laundry on tues day and that set off the pain cycle , just the bending over , all the clothes are in a rollling cart.
          i also was trying to work on my kick bike , and had to drag it inside the garage since it started raining, that also triggered it.
          i do find if i can talk to people and engage n comversation , and not be sitting it will help a lot, however when i have triggered the pain, nothing but a lot of meds , and then i can only walk, no driving , will work, hopefullly today will be ok, so i can pick up some rx's and also find some pvc tubing to continue the gerry rig for my PIE machine. Having too much material in my intestines also will increase the pain.Two years of messing with the PIE and a small aprtment and small bathroom , if i can't figure out an easy set up for the PIE, i will have to go for the MACE.
          cauda equina

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          • jc

            Yours is a hard post to comprehend, for me. I am not certain what you are really saying. Are you saying that the pain is bearable because you are working or that it disappears because you are working.

            Do you think the situation would be different if your lesion were high, say C4/5?

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            • If JC's lesion were C4/5 - he my not be able to do dental surgery with bilateral upper extremity motor involvement. I would't want him yanking my molars with weak spastic quad arms and hands!

              JC - It is impressive that you can 'mind over matter' ignore the severe burning to the point that you would operate on someone who is putting their trust in you. Bravo to you. I have only recently returned to work but not in patient care but only chart review. When the burning becomes too distracting, I can stop working at any time.

              If I were to stop medication I would be on the floor feeling like some one put my legs in electric sockets and would have someone driving a dry 2 by 4 up my rear end with a sledge hammer. I could not do, say, microsurgery on the ear rebuilding eardrums and ossicles.

              I am impressed by your ability to just stop all medication and carry on with surgery. Any further advice you could give on how you did that would be appreciated. What about when you come home from work? How is it falling asleep? Do you feel the neuropathic pain at the end of the day once there is no more distraction or stimulation?

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              • I never know whether to be amazed or angry when someone says, I just stopped taking my pain meds, and went on with my life! I can't help but wonder what level of pain they're dealing with...... I did without pain meds for a very long time, until sitting in a chair crying most of the time was about all I could do. I've been going to a pain clinic now for two years, and they can't give me my life back.

                If there's a trick I don't know about, I would like to know what it is! Mind over matter does'nt work for me anymore, and has'nt for a very long time. I'm afraid pain has taken control most of the time.

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                • I think much of I gave up my meds and function normally is B.S. I thinks it should be weighed in the process that pain is reltive and not measurable. I have a friend who thinks the have a bad back ans takes days off for it, but wouod handily go shopping in NYC.

                  Also the side effect of pain meds is the need and reduced efficacy and larger doses needed have a friend who had major pain issues taking massive drugs, detoxed and the pain is basically gone.

                  who can say? I gave up the meds as they didn't do shit and barely hang on.

                  whatever, unfortunately I lump these into the take 100-mg of vitamin kiss my arse and you will be well.

                  JC if you are doing well God Bless but I won't drink your kool aide.

                  ungraciously

                  ket
                  Kindly,

                  The Ketamine Kitty

                  All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                  Next time I die make sure I'm gone,
                  don't leave 'em nothing to work on JT

                  And I ain't nothin but a dream JM

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                  • @arndog -- you, sir, are the most gracious person I've known in a very long time.

                    @smokey, when I hear people say ''I stopped taking my pain meds -- I just muster up my courage and don't even think about the pain...i am always busy and i try to keep my mind active'' I get angry.

                    Yes, it's great they're able to do that. But the message I hear behind the words is ''those who take pain meds lack the courage to face their pain...if they were just brave and kept busy like me, they wouldn't need to take pain medication either.''

                    It's the same old ''mind/body'' BS we hear all the time.

                    It does take courage to face pain without taking pain meds. But it's all relative. To the person whose worst experience with pain has been a paper cut, it takes a hell of a lot of courage to deal with a dislocated shoulder without pain meds but it can be done. By keeping busy enough and distracting yourself from the throbbing ache in your shoulder, you can ''tough it out'' and make it without the Vicodin others are using.

                    But show me someone besides a Buddhist monk who believes all of life is suffering and has devoted his entire life to training his mind to cope with whatever suffering he must endure who can ''muster up his courage and keep his mind busy enough'' to face the pain at a level comparable to having the dead tissue from third degree burns covering their lower body vigorously scrubbed off with stiff bristled brushes every minute of every day without pain medication.

                    If you can make it without pain medication, more power to you. But before you act on the urge to tell others that coping with pain without the aid of medication is just a matter of having enough courage and keeping busy, take a minute to consider that the people you're talking to might be having their skin scrubbed off with stiff bristled brushes. If you could face that day in and day out for weeks/months/years without meds, go ahead and spread the gospel of courage. Otherwise, either use your voice to tell them you feel for them or stfu.

                    My two cents.

                    @ket kit -- Love you.
                    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                    ~Julius Caesar

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                    • Hip Crip, you said it much clearer than I was able to......and you're right, whether they mean to or not, it is that unspoken.....if you would just toughen up and keep busy theory that drives me up the wall!

                      God bless those who can do without the meds.....and even more, those who the meds don't help at all. No one hates this medication more than I do! It's a trade off, and I don't like it! Especially since it does'nt even work well. But without it.....I'm done. Stick a fork in it, finished! Many of us don't even know what to do anymore.

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                      • The recent cold front has made me scream between the muscular skeletol, the CP and the spasticity/spasmy pain. I just wish I could hibernate & not feel a thing until spring is really back. Oh wait a minute, I hurt then too!! just not as bad. I never thought I'd miss my hell fire feet but I hate these freezing icesicles worse!

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                        • Crazy weather torturing me too. If a t-storm rolls through in the early morning hours I'm guaranteed to have a day full of searing legs and bone-crushing back spasms. And I'll have to sit at work and try to keep it together while everyone around me bitches about their little allergy problems and achey backs ("I must be a 10+ today ha ha!"). All I can do is come home, lie down, put in some earplugs and put a pillow over my head, and try to leave the pain behind mentally.

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                          • I'm so tired.

                            No sleep again because I spent last night screaming, crying, questioning why I had to hurt so bad all the time, and pleading for even a moment of respite from the never-ending pain and the violent spasms that make my right arm and hand slam against the bed over and over and over and over again all night, leaving the exhausted bicep and deltoid aching and in knots.

                            I'm so damn tired.
                            It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                            ~Julius Caesar

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                            • Well it is once again time to say FUCK!!! The fires are burning tonight my friends!!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!! This too shall pass!!!
                              L1 Complete - Injury 3/12/06 - Grateful to be alive!!!!

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                              • Originally posted by Lazlo View Post
                                Crazy weather torturing me too. If a t-storm rolls through in the early morning hours I'm guaranteed to have a day full of searing legs and bone-crushing back spasms. And I'll have to sit at work and try to keep it together while everyone around me bitches about their little allergy problems and achey backs ("I must be a 10+ today ha ha!"). All I can do is come home, lie down, put in some earplugs and put a pillow over my head, and try to leave the pain behind mentally.

                                Very interesting. We had a small storm about 10:00 last night and rained quite a bit. Was not a t-storm or I did not hear any.
                                My husband had one of the worst nights ever with pain and was a complete wreck this morning-he slept until 3 PM once he got to sleep.
                                Once the pain starts winding up his anxiety does and an Ativan helps slightly. Before SCI he did not even know what anxiety was and barely even took Tylenol
                                I wish there was a key to this.

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