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

  1. #1041
    Senior Member alan's Avatar
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    10 mg. Dilaudid IV did nothing for my pains, nor give me a high. I had worked up to that level-I didn't just one day get a 10 mg. shot.
    Alan

    Proofread carefully to see if you any words out.

  2. #1042
    While we aren't cured of these intense pains, we at least know a LOT of others suffer them, in ways we both understand and experience.

    My "daily demon" pain surfaces at waist level, both sides, right beneath the skin. Deep, sweeping, predictable waves, with very different "feels" to each side. Huge, dull ache-waves in left flank. Sharp, burning, red-hot fire-brand stabs to the right groin.

    My pain is due to nerve damage from a spinal tumor (astrocytoma) at L3 level, and it's tied (after 41 years since my surgery/chemo) to any kind of bladder 'event'. UTI's set it off like a lightning storm. So will almost any simple trunk movement, especially when I lean or reach over to the left.

    This pain wakes me up about every 90-180 minutes at night, which, ironically, keeps me flipping sides to prevent sores. Turning over can help put out the pain for a while. It's worst ... when first sitting up in the wheelchair to start the day with breakfast. Pain waves first 'churn' ... low level, over and over, until they finally burst out into a full-bore attack - which feels like red hot steel wool against raw nerves. These range between a "7" and a true "10" on the pain scale of 0-10, and can last between 2 and 8 minutes. I compare them (sometimes to close friends) to seizures which epileptics experience (while I have not ever had a true seizure). It just ... takes you over, has it's way with you, then leaves you alone for a while. Thankfully, we don't have them every moment of the day. Who could endure? But they share common neuro-electrical triggers - seizures, and these nerve pain attacks SCI folks experience.

    This is head-splitting, mind-altering pain that (worst of all) surfaces over and over with no discernible purpose. It is not a pain that "leads" to anything healing or productive. It is pain for the sake of pain. Brutal, sadistic, indifferent torment - thanks to a tiny junction of pissed-off nerve cells lurking inside an aging spinal cord.

    I have been a paraplegic since 1975, and have had these nerve pains (doctors usually call it "angry nerve syndrome") for 31 of those years. It intensifies with age. It isolates me, even in a room full of people, because despite the hydrocodone and Lyrica I take, the waves flood over and shoot though without warning. I double over, apply pressure, pinch my stomach, wince, and try not to explode with verbal expressions of what's going on inside my spine and brain. Attempts to explain what's going on are usually met with caring but blank looks. It's no one else's fault that they don't "get" what my nerves are experiencing. But the repeating 'experience' of these nerve pain surges serve to drive me deeper inside my own head, making it more and more work just to interact with people even on my best of days. --- Instead of serving as a 'venue' for life and friendship, my body feels more like a tormentor I have to work around, curse, ignore, or hopefully (somehow, some day) ... outsmart.

    That's my pain. It's what I feel about 3 times an hour every day. It's what I can't even imagine living without, because it has been at my side, inside of me, clawing it's way to a malevolent attempt to define my interior world now for 3 decades. It's the demon I know but can't talk about in pleasant company.

    Thanks for the space to breach that convention - even for a few minutes!

  3. #1043
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    I'm thinking that if the pain disappeared it would be such a shock we would think we were ill lol. Old age is a bitch, you have to put up with your disability issues as well as your old age when things just start falling off. I see Google and others are working on ageing and treating it as a disease, all the complications that come with getting old are just symptoms of the underlying cause, ageing itself. They are working on treatments which will extend a persons health span, I saw an article a while back which said that a lab somewhere had successfully reversed the age of cells in mice.

  4. #1044
    bollefen

    Glad to see you are still posting and also glad Grange started this particular thread. I continue to feel that there is no adequate treatement for fully elaborated central pain and that sedation is the only thing that helps and that those who advocate for various things may not actually have central pain although they certainly may have post SCI pain, post thalamic injury or post stroke pain etc. I wish you and all the gang the best and hope you occasionally feel well enough to post.
    Last edited by dejerine; 05-24-2016 at 05:27 AM.

  5. #1045
    It is a dictator of your life. I hate this shiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiii iiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiii iiiiit

  6. #1046
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    I hear you, Abelard. My pain, even with meds is around 7 everyday with bursts higher and flares morning and night at 10 plus, not controlled by meds, that I just have to endure. I, like you, have bursts throughout the night that keep me turning over to try to find relief, but my hips and lower back are in more pain from this and my shoulders and arms get completely exhausted. On the plus side, as you stated, at least I'm avoiding bed sores. 😉

    The thing I find hard is when I'm out (which isn't a lot due to all my issues) around town, surrounded by strangers, and I have spasms and pain similar to what you described: that debilitating, curl over to try to make it stop kind of pain. Of course I get looks from lots of people, but also some offers of help. The thing is, there's not much to do, and I'm in such pain it's hard to have a conversation; I really just want to be left alone, unnoticed, but of course the girl in the big power chair with the service dog stands out. It's proved a big challenge to put on a smile until I get somewhere more private and wait for the pain to subside enough for me to continue on my way. It's also hard to explain to acquaintances...um, well, I sometimes get these really bad, sharp pains. Please ignore my initial piercing scream; I'm fine, really.

  7. #1047
    only 10 years for me and that is enough. did not sleep well. just fade in and out at night. then feel like you describe. very anti social because of it. bowel bladder ringing in ears. I still do not feel like I will live much longer. I have been asking for help from the medical profesion. but every dday turns out the same. I am glad I found a thread that I should have followed a along. Feel like I am in hell or jail or mental institute with this body.

  8. #1048
    I have just started showing what it does to me at home because hiding it from people does not help. normal isn't possible. I can get very wound up by it and I think I have high blood pressure know. More health problems that I have had enough of sore teeth sore eyes. sore feet what is the point . i can barely touch my skin and fat as it is on fire.

  9. #1049
    a dog and cat and pets to look after are helpful

  10. #1050
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    Quote Originally Posted by stevegalliazzo View Post
    I have just started showing what it does to me at home because hiding it from people does not help. normal isn't possible. I can get very wound up by it and I think I have high blood pressure know. More health problems that I have had enough of sore teeth sore eyes. sore feet what is the point . i can barely touch my skin and fat as it is on fire.
    My heart goes to you. I have allodynia and erythromelalgia, both rare to most and very hard for people to understand. I'm diagnosed with a plethora of other issues, but they don't explain everything...I feel you; I was where you are saying what is the point in September, because just getting through the day is such a chore. I felt like nobody really understood and I don't like to complain, so...I am lucky to have my pup. Honestly, knowing I've got to get up and take care of her keeps me going many days. I'm also lucky to have a good medical team including a great counsellor who's known me since this whole thing really kicked into gear. So, that helps.

    I have been told it would be helpful to try to figure out the whole picture, but I've had a rough time with specialists blowing me off, because my case is so complex and that takes its toll. I don't know if I can handle much more of that; this has been progressing for nearly 20 years. So, that's why I decided, and my core team feels fine with it, I am just going to accept things the way they are, because all the worry and frustration wasn't doing me any good.

    Ironically, since working on acceptance, I feel stronger in many ways. I am weaker even since this autumn, the pain is still there, in fact it's increased, and my EM is acting up something terrible, but I feel it's all just my "stuff" to live with; we've all got something, some more than others, you know? I also feel empowered chatting to people here and reading about their experiences which often mirror many of mine. So, I don't feel as secluded and alien. I feel like I am understood finally, at least I hope that's so.

    It really sucks to have so many issues happening all at once that make something like going out to the market or going for a coffee a huge task. I've got to plan big time even if I'm only going to see my counsellor. I need my meds, poo bags, wipes in case I have an accident, hand sanitizer, my ID, money just in case, my phone, a plastic bag for my controller in case it rains, a blanket to cover my lap because it hurts to have my pup on me, and the list goes on. The thing is, with all this going on, I know there are people who have more to do just to go out. It doesn't discount my challenges, but it reminds me it could be worse. My niece and I make a game of that sometimes; things could be worse if...then we laugh about the outrageous stuff we say. I mean, we could be a giant in a world with no giants and no one who understands us, and maybe they're all scared of us, so we're forced to live deep in the woods like Shrek. Them we think, we like Shrek, even though his gas smells atrocious and he bathes I mud. So, maybe it wouldn't be so awful. I know it's silly, but it helps me keep it light. We gotta laugh or else we get too bogged down, you know?

    It does break my heart sometimes when I see pictures of before I became this disabled, when I could still hold my niece and go for long walks. Sure, I was having trouble with hills and stairs and I sometimes used a cane; I got more tired out than other people after exertion, and I was having seizures, but if I look back at that now, it seems like nothing. At the time, it seemed like so much. It reminds me it's all about perspective and I think I've got some choice in how much I let it hurt. There are definitely times I get pissed. Like earlier today I dropped the whole salad I had just made on the carpet and it had taken all my energy to make it. I screamed and I felt defeated. Then I realized there was nothing I could do about it, but deal with it. So, reluctantly, I got myself onto the floor, I got the salad cleaned up, I washed my hands and I went to rest. That was all I could do. I watched a little of this car show I like and after a while, my appetite returned. However, these outbursts have lessened significantly since working on acceptance, and who wouldn't be pissed if they dropped a meal they'd just spent a long time making?!

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