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

  1. #671
    Quote Originally Posted by smokymtn memories View Post
    HipCrip.....I so know how you feel girl! The storms and the heat are the worst! I've been stuck indoors all summer......hell....even if it cools off, I still won't be able to do much until these legs heal. Two weeks ago I laid on my right arm long enough to stop the blood flow....now I can't use my right hand. I'm right handed.......my postcards are just sitting in front of me. I can't write a dam thing yet. I get so bored...and I miss writing. It takes my mind off of things. I guess I'm lucky I'm able to two finger type! I've done this to my left side before, but never my right. I hope I never do it again! Will be thinking of you.....
    I miss your cards, though you know I never respond. You have such a kind heart! I was forced to become a lefty. tho I still write w/ my right. You've seen the illegible results! I type w/ 1 finger, 1 thumb and a thumb knuckle. My Nazi-model typing teacher in 8th grade would be so proud.

    @ THC: This is the first time I remember anybody mentioning rectal pain. It plagues me SO BAD. And somehow my ass is connected to my feet, and lately my hands.

    I've been so sedentary due to heat (that's my story and I'm sticking to it) that I can't sleep. What fresh hell is this?

  2. #672
    Good to see you out and about Beth. I hate the thought of having to use my left hand.....but I might have to...especially if I keep messing up my right! Yesterday, I could'nt even use the mouse....that is on Thursday. I keep forgetting when I'm up all night, it's the next day after midnight. I've begun to hate this chair I live in. Can't remember the last time I actually went to bed.

    I remember the last time I had to tell my neurosurgeon where the neuropathy bothered me the most.....well, besides the obvious feet, legs, hands.....I hurt so bad that day...I told him he could add the toosh and who who to that list! Thanks to my neck and lower back surgeries, laying in bed is not easy! Now add that wonderful neuropathy to my toosh and who who...and you can't stand sitting anymore either! What am I suppose to do? Hang from the ceiling like a dam bat!

    Sleeping in this office chair is how I creamed my arm! It's a little hard to find a comfortable position!

    This summer heatwave is our brand new hell! I can't wait for fall weather to come! I can't even breathe in this heavy humidity with this blasted copd. I just had to take a bunch of potassium because of low levels....I suppose I'd better have her check my vitamin D level next......since I never see the sun shine anymore! Blinds are always shut to keep the heat out! I told Jim I feel like a dam mole must feel....I'll need sun glasses to protect my eyes when I go out!
    Last edited by smokymtn memories; 09-04-2011 at 05:18 AM.

  3. #673
    i have had bad burning pain in my legs from the time i've been hurt. i have only found one thing that actually works. i have severe insomnia and the dr. prescribed ambien. i noticed if i stayed awake it would relieve my pain most of the time. i'm not advocating anything but when you hurt bad enough yer willing to try anything i might suggest i was having problems sleeping and talk with my dr. 3-4mg works for me. the pills i get are 5mg i just bite off a tiny piece of the pill and let it fall back in the bottle. i have no idea what prolonged use has / could have done and i don't care. of course 1 pill only lasts 5 hours or so but i don't want to ask her to increase the dose as she might not want to, might want to switch to another med etc. i don't want any chance she might take me off of it.
    Last edited by torval; 09-03-2011 at 09:34 PM.

  4. #674
    torval - I'm with you. Here's to ambien to get a respite from the burning fires at night! I have taken ambien/zolpidem for 9 years post SCI with unrelenting burning - I am a cheap date too and a low dose of 5 mg does the trick. The dose necessary has not increased over the 9 years. If half that dose works for you, that is great. I wouldn't care either and your doc shouldn't either. I am sorry you are worried that you may not have access to this safe medication from your physician.

  5. #675
    Oh I have never had to use this thread, but tonight I do. There is no one to share this with locally who hasn't heard the same complaints over and over and I have exhausted the compassion and listening ears of those nearby. "Is there anything I can do right now to help?" just doesn't seem to help.

    I awoke at 4am with butt burning that usually hits at 4pm at which point I only have 5 more hrs to go before the end of the day. So this is the start of a bad day, increased meds, some screaming inside and out to the walls and my dogs. My flaccid bladder then decides to contract (last time it did so was 4 yrs ago), and there is a smell of a dead cow coming out of my Hartman's pouch ( rectal blind pouch after colostomy) which required tending to which flairs up the NP pain in the butt.
    So what I am trying to say here is &*^^&***%$%^ this pain.

  6. #676
    Arndog,

    This may sound morbid, but is the pain centered in your rectum or is it more general, ie how high and how wide do you experience it? Don't answer if it is annoying or too personal, but I may be the only one interested in whether your butt pain is general or very localized. And are you saying that your physical care of the blind pouch in the distal rectum sensitizes the neuropathic pain aspect? Is it burning or sharp? In your post above you mention the "burning fires" but in another post, I noted the term "stake up the butt". Sorry to ask these questions, but I am trying to fill out a complete summary of the different pains. I really try to track what people are saying. Most of the time, they are just so miserable that they haven't really thought that much about it. PM me if you prefer.

    Also, I am very sorry you have to go through this. You have had a lot to deal with lately. I don't know whether trying to function distracts you from this, or the pressure to function makes flareups more disheartening. When we look at what a person has to deal with just from the consequences of cord/equina injury, they are so appalling, that I think it gives evidence that there would be no reason to make up a story about pain. Just the run of the mill SCI is so rotten, that there is no need to say anything about pain to complete the picture. That is what I do not get about the mind/body crowd. Have they actually had experience with SCI people to realize why they would have no reason to make up pain if it were not present.
    Last edited by dejerine; 09-05-2011 at 01:35 PM.

  7. #677
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    Quote Originally Posted by dejerine View Post
    Arndog,

    This may sound morbid, but is the pain centered in your rectum or is it more general, ie how high and how wide do you experience it? Don't answer if it is annoying or too personal, but I may be the only one interested in whether your butt pain is general or very localized. And are you saying that your physical care of the blind pouch in the distal rectum sensitizes the neuropathic pain aspect? Is it burning or sharp? In your post above you mention the "burning fires" but in another post, I noted the term "stake up the butt". Sorry to ask these questions, but I am trying to fill out a complete summary of the different pains. I really try to track what people are saying. Most of the time, they are just so miserable that they haven't really thought that much about it. PM me if you prefer.

    Also, I am very sorry you have to go through this. You have had a lot to deal with lately. I don't know whether trying to function distracts you from this, or the pressure to function makes flareups more disheartening. When we look at what a person has to deal with just from the consequences of cord/equina injury, they are so appalling, that I think it gives evidence that there would be no reason to make up a story about pain. Just the run of the mill SCI is so rotten, that there is no need to say anything about pain to complete the picture. That is what I do not get about the mind/body crowd. Have they actually had experience with SCI people to realize why they would have no reason to make up pain if it were not present.
    The people of this world, SCI or not, who deal with bad chronic pain and manage to somehow stay sane are the mental bad-asses of the Earth. There is no reason to worry about what anyone else thinks.
    2012 SCINetUSA Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

  8. #678
    @smokey/T -- I just went through the loss of my right hand/arm again. I first lost the use of it for about six months after the second tumor surgery back in 10/78. Never did regain any feeling [touch, pain, position, or temperature] but I did regain enough gross motor skills to use it to write and use my index finger to type. After my shoulder dislocated for good, the arm/hand would go dead anytime I laid on my right side, but it used to come back 15 minutes after I stopped impinging the nerves. But in the last two months, I've lost strength and dexterity in that hand, this time it seems to be permanent. I can't extend My index finger at all, so I'm officially a one-handed typist, and I've been teaching myself to write with my left hand. Fortunately, I knew this would happen at some point and have been practicing using my left hand for writing for years. It sucks royally, as does my left-handed writing!

    @betheny -- The rectal pain is a very new, and very unwelcome, addition to the mix. With apologies for being grossly graphic, the sensation is along the lines of being penetrated by a popsicle covered in shards of glass after a month of having explosive c. diff. but magnified exponentially. It's horrific. Does the pain get worse for you when there's pressure from stool or gas?

    @torval and Arndog -- add me to the chorus singing the praises of ambien. Before Medicare Part D dropped it from the formulary, I took the 12.5mg Ambien CR nightly, which enabled me to get between 3 and 6 hours of uninterrupted sleep. The 10mg regular ambien doesn't work nearly as well -- I am wide awake anywhere from 45 minutes to two hours after taking it -- so I also take 2mg of Lunesta along with it. Sleeping has been my preferred form of escape from pain for as long as I've had central pain (33 years this October 16), but even with the boatload of sleep meds, it's becoming more difficult to get more than an hour or two of uninterrupted rest as my pain intensifies.

    I'm really sad that you've had to join in this thread, Arndog, and that the reason for it is that you were jolted awake by the burning.

    I'm on day two of transitioning from Oxycontin to methadone, and I'm hurting worse than I have in several years because of the need to start at a very low dose and titrate up. F#$%@! the pain, f#$%@! the non-existent options for treating it, and a special f#$%@! you to everybody in the "it's all in your head" camp.
    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


  9. #679
    i'm dying today, i fucking hate this
    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

  10. #680
    My husband takes Ambien and a Ativan at night and hardly helps him sleep when he really needs a respite from the cp. He takes a couple percocet a day for his neck pain, Lyrica 150 3X a day. When his legs and arms feel "tangled up" he takes a Ativan during the day. He does not take more than 2 of them a day.
    He was getting some PT-deep massage for his neck that helped for a while. The injury is higher on one side and he lists.
    We have learned so much about pain on this thread and he knows he is not alone even if he does not post or read as does not use computer.
    My best to everyone who feels the need to use this %^&$# thread.

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