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

  1. #581
    my pain has more than doubled in the last couple of weeks, i had it managed, it was always there, The 24/7 meds with usually 4 fenatyl (fentora) a day for bt , plus 600 neuronton 3to 4 times aday usually kept it at the same level, the fenatyl worked on bt pain and knocked in down, quickly. it was the only thing that gave me my life back, i am very fortunate my insurance covers it. WHEn i was on opana i was going to die, it didn't knock the pain down and i would be taking it intil it did, or else. the darkness was calling for the dirt nap.

    i realized what was causing the increase in my pain, i am pretty sure at least.
    i was tored of being tired from all the meds, and was trying to cut down on my anti anxiety meds, clonadine, i tried to drop a 1/4 mg at a time, it was tough at first, but all of a sudden i went from 2 mg to 1 3/4 , and somehow dropped to 1/2 and 1/2 , about 1 mg a day, however the pain was really growing during this time, i put it off to sitting too much as i had to do paperwork, i put it off as preparation for the PIE and all the rarranging i had to do to be able to put it and the supplies away, but also have it easily av ailable so i would do it as often as i should, which i havent been.
    i thought trying to place a bed in a bag under the head of my king size mattress, as a lift for the 15 to 20 incline the PIE recommends did it. al thjis stuff.
    but then i remembered when i started the methadone with the fentora and took xanax, it was the first time in years that i slept without pain waking me up. i would be exhausted and fall asleep in my recliner, within 30minutes the shocks in my toes were waking me up. no matter what i did , the pain always woke me out of sleep before i was rested. every morning at 530am , the pain would wake me up. when i added the xanax to the mix, because of the anxiety everything was causing me , within 2 or 3 days , the pain was not waking me up. the absence of pain was such a big thing i noticed it very quickly.
    i told my new doc about it, as i started seeing him around the same time , i think he discounted it, but they do clinical pain research there.
    as much as i hate to go back up on my anxiety meds, it sure beats this pain, and i remember when i went to the clonadine from the xanax , the pain relief was less, the xanax was a better combination. it is a scary med combination, but i was almost screaming two nights ago when my normal amount of fentora was not working, and i was fighting taking the second dose, soon every fentora dose became a double dose, which is allowed after 25 minutes.
    however my rx wont last, and i really do not want to raise my micrograms, as i have been stable on this dose for about 2 years. It just goes to showm that you take one med out of the mix, or lower it, and it has effects that doctors are not knowledgeable of. i also am keeping my neurotin high too, as that gives a lot of help when i am in extreme pain.
    cauda equina

  2. #582
    It's gonna be one of THOSE DAYS!!!!!!!
    L1 Complete - Injury 3/12/06 - Grateful to be alive!!!!

  3. #583
    Grange, I can't tell you how grateful I am that you started this thread. Having a place to vent where there's people who can empathize and are willing to listen to the same litany of complaints again and again is better for my mental health than any shrink could ever be.

    The central pain and allodynia that affected my right hip/leg and left arm during the two years after the second excision of tumor (and a whole lot of cord) from C2-C7 is coming back.

    I am pissed that I'm going through *another* major decline. And I'm scared because if it gets even 70 percent as bad as it was following that surgery, I won't be able to endure it.

    Right now, the new central pain is, well, painful, but still very mild compared to what it was back then. There's some burning, a lot of itching, and some pretty severe cutting/stabbing/needle pain, mostly in the right calf/shin and foot. The allodynia is ramping up much more quickly, and is also most severe in my right leg and foot.

    On top of that, the pain from my permanently dislocated right shoulder is getting worse every day, my existing pain -- nociceptive and central -- is getting worse, and I've got this as-yet unexplained bone pain going on in my right femur, hip, and pelvis.

    Frankly, I'm long past tired of this #$%&-ing pain -- I'm exhausted from it.
    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


  4. #584
    Senior Member
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    Quote Originally Posted by fantasyworld_31501 View Post
    you should be praying to God instead of saying the F word. How distainful. I really get discouraged with this pain but I think of only how god can help me. I know for a fact that we must lean on him in order to get the help we need. Many doors have been opened for me and I praise him for that. Now you do have the right to curse as you choose I just wanted to state my opinon. Diane
    I came here to curse the fire the summer heat has raging in my legs. If you don't like cursing, that's one thing, but don't throw somebody under the bus b/c they do. I thank God for everything I have & through him, I have strength. Quite frankly though, you aren't "supposed" to ASK God for things, that's not the intent of praying. You ask him for strength& the fight to get through bad times. I think one would be in "fantasyland" to think pain is something they shouldn't curse or despise. The hate is directed towards the pain, not God. Please post in this thread if you hate pain. If you don't want to curse just please don't judge those of us that use it for coping & venting.

  5. #585
    Thanks Q79.... That was my intent when I started this thread. To have a place to vent and NOT BE JUDGED. Hopefully fantasyw...31501 understands that we are not foul mouthed heathens running around cursing everything all the time. It's just nice to have a place to scream when the heat turns up to high!!!!!
    L1 Complete - Injury 3/12/06 - Grateful to be alive!!!!

  6. #586
    Ok.... so apparently since the drugs don't really help anyway, my mother called my doctor and told him that I don't really need them or that they aren't working or something. I'm not sure exactly what she said to him but point is that I am no longer on anything for my pain. This is completely AWFUL!!!! I can't get to sleep until at least 5am every morning and need to be up by 6:30 to start my day. My mom and dad both seem so happy that I am not on the meds that I can't bring myself to attempt to explain how much agony I am in. It is quite funny that even with the tiny amount of relief I was getting that I now miss that sliver of "normal". The heat last week was no help either. It literally was taking my breathe away...... I HATE THIS PAIN SO MUCH!!!!!

    Becky
    T8-9 according to latest scoring.......
    since 1/3/04

    I am the best at being me. No matter how that happens to be!!

  7. #587
    Damn Becky.... How can your mother speak to your doctor for you? That is not even legal unless you are a minor or have been ruled incompetent to make your own decisions. - G
    L1 Complete - Injury 3/12/06 - Grateful to be alive!!!!

  8. #588
    Quote Originally Posted by bcsimpsons View Post
    Ok.... so apparently since the drugs don't really help anyway, my mother called my doctor and told him that I don't really need them or that they aren't working or something. I'm not sure exactly what she said to him but point is that I am no longer on anything for my pain. This is completely AWFUL!!!! I can't get to sleep until at least 5am every morning and need to be up by 6:30 to start my day. My mom and dad both seem so happy that I am not on the meds that I can't bring myself to attempt to explain how much agony I am in. It is quite funny that even with the tiny amount of relief I was getting that I now miss that sliver of "normal". The heat last week was no help either. It literally was taking my breathe away...... I HATE THIS PAIN SO MUCH!!!!!

    Becky
    Wow, sweetheart, no disrespect to mother there, but your mom is not the one with a SCI and would have zero clue as to what you experience on a daily basis. I had a family member who started that medication free BS while I was in rehab and it was not long before the physicians and social workers intervened to put a stop to that nonsense!! If you're a minor, there is a certain amount of power your parents have in the say of your care, but at the end of the day YOU are the patient. You need to contact your physician's office and demand some proper care and if need be tell them you'll get a social worker involved, No one should have to endure this crap without any type of pain control!!

  9. #589
    Grange and Patty, Yes I know how insane that sounds!!! But it's completely true. She called up to the nurses station one day this last time I was in the hospital and demanded to speak to the doctor about what the plan of action was. The doctor called her back and apparently they had a discussion about my pain meds and other things. At the end all of my meds were withdrawn so I am on absolutely NOTHING!!
    I am way over the age of 18 so I am no longer a minor. I do not blame just my mom, I also blame the doc. I have since fired the doc and am starting with a new doc at the end of the month. I am going to explain to this doc that under NO circumstances are they to speak with my family about my care or treatments plans, etc....I am still completely flabergasted that they even would acknowledge her wishes and not mine. I mean, I AM THE PATIENT for goodness sake!!! The only problem is.... the appointment is such an eternity away. I tried explaining what the situation is but it got me no where.

    Becky
    T8-9 according to latest scoring.......
    since 1/3/04

    I am the best at being me. No matter how that happens to be!!

  10. #590
    If you have the finances one possible solution would be to visit a quick care and explain your situation of having a future appointment with a PC, but your currently without any kind of medication. Your not going to be able to get any narcotic pain medicine, which in my HO is ineffective in treating neuropathic pain. You'll more then likely be able obtain a short term script for medications such as gababpentin, baclofen and tramadol. This should provide you some relief until you can workout a better plan of care with your PC or PM docs. Taking a copy of your medical records may also be helpful. Any medical entity that provides you with care will require that you sign a HIPPA release form. Take that opportunity to inform the staff specifically of who you do and do not want to share in your medical decisions and information. The best of luck to you!!
    Last edited by Patty41; 06-14-2011 at 12:26 AM.

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