sammyo1
08-08-2008, 01:24 PM
Hello everyone I have thought about asking this for a while. you know I have ofter thought that over time you toughen up abit from being in pain all the time. What pain use to keep me down I now can function abit with. I was sitting the other day in pain of course & thinking what number it this at? I realized that the pain I was in would have had me not functioning or at the least pretty scared. I am used to that level now. Of course because the pain has become worse. It sounds abit strange but its almost as though it becomes a part of everday life & you get use to some level of pain. Of course I have days that I dont think I can take it. So what would have been a 7 is now a 5 or 6. I hope this makes sense. I was wondering if anyone else feels the same. Of course every time I think this is it, it can not get any worse it does.
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katlin09
08-08-2008, 01:30 PM
I guess one of the questions to think about it is, have your meds increased over the same time, and is this why your pain has become more manageable?
123dietdrpepper
08-08-2008, 03:09 PM
I personally believe you can. I think my pain has made me stronger. I find 6/7/8 almost acceptable because I have been at this level for so long. I have seen a 5 maybe 3 times since September 8, 2007 when I had that lovely nerve block that started my walk with daily chronic pain.
Other people are probably :eek: about that number but if you live it every day I believe you do develop tolerance and adjust to it. Sure my life is rather boring, I rarely go anywhere outside of the house because it drives my pain up into 9's and the pain is not worth it. I do very little cleaning and cooking. If I do it, everyone is pitching in and I do everything at waist level. When I cook my children are in the kitchen with me bending, etc.
I can't wait to see what others have to say. Great question.
Other people are probably :eek: about that number but if you live it every day I believe you do develop tolerance and adjust to it. Sure my life is rather boring, I rarely go anywhere outside of the house because it drives my pain up into 9's and the pain is not worth it. I do very little cleaning and cooking. If I do it, everyone is pitching in and I do everything at waist level. When I cook my children are in the kitchen with me bending, etc.
I can't wait to see what others have to say. Great question.
forginon
08-08-2008, 03:42 PM
I think we do tend to grow accustomed to pain after a while.
However, as I've been taught, we have two responses to pain. One is physical and the other is emotional. And, to a degree, experts believe we can get somewhat accustomed to pain with both responses. But, I don't think we can adjust emotional responses as easily as we do the physical responses. Or, maybe it's the other way around.
I have learned to expect pain. Not accept, but expect. When I do certain things I expect it to hurt. Like getting up from lying down or sitting. I expect going up and downstairs to hurt. I expect to hurt after my TT. Actually, I expect to hurt all the time, with some times worse than others.
Do I accept this? No. And that's part of my emotional response to pain. I can handle pain emotionally to a point, but I hate it and I do not think it is fair. I think it is wrong. Things were not meant to be this way. I feel violated. I don't dwell on this, but this is how I feel.
I was taught by a pain management therapist that there are ascending and descending pathways for pain, and for our responses, both physically and emotionally. Intellectually, we define pain by using certain terms - like stabbing, pounding, sharp, dull, intermittent - words we use to describe pain physically. There are other terms too. Debillitating, crushing, terrible, agonizing, depressing, annoying, etc. These are descriptions of our emotional response to pain. I was taught that if we can catch our emotional response to pain before it hits the descending pathway, we can actually "feel" less pain. But this requires recognition and practice. We need to recognize the very first inkling we have of pain, or rising pain, and right then and there adjust our emotional response to that pain signal. If, and that's a big IF, if we can learn to adjust our emotional recognition and response to pain on the upswing, then we can have more control over how the nervous and emotional systems decide how intensely we feel the pain. Our descriptions can go from debillitating to something less severe. It is kinda mind over matter, but my therapist tells me this is the future of pain management. Not to the exclusion of meds and other material forms of therapy, but this will become increasingly important as a tool in fighting CP.
If I ever learn to do this I'll let y'all know.
steve
However, as I've been taught, we have two responses to pain. One is physical and the other is emotional. And, to a degree, experts believe we can get somewhat accustomed to pain with both responses. But, I don't think we can adjust emotional responses as easily as we do the physical responses. Or, maybe it's the other way around.
I have learned to expect pain. Not accept, but expect. When I do certain things I expect it to hurt. Like getting up from lying down or sitting. I expect going up and downstairs to hurt. I expect to hurt after my TT. Actually, I expect to hurt all the time, with some times worse than others.
Do I accept this? No. And that's part of my emotional response to pain. I can handle pain emotionally to a point, but I hate it and I do not think it is fair. I think it is wrong. Things were not meant to be this way. I feel violated. I don't dwell on this, but this is how I feel.
I was taught by a pain management therapist that there are ascending and descending pathways for pain, and for our responses, both physically and emotionally. Intellectually, we define pain by using certain terms - like stabbing, pounding, sharp, dull, intermittent - words we use to describe pain physically. There are other terms too. Debillitating, crushing, terrible, agonizing, depressing, annoying, etc. These are descriptions of our emotional response to pain. I was taught that if we can catch our emotional response to pain before it hits the descending pathway, we can actually "feel" less pain. But this requires recognition and practice. We need to recognize the very first inkling we have of pain, or rising pain, and right then and there adjust our emotional response to that pain signal. If, and that's a big IF, if we can learn to adjust our emotional recognition and response to pain on the upswing, then we can have more control over how the nervous and emotional systems decide how intensely we feel the pain. Our descriptions can go from debillitating to something less severe. It is kinda mind over matter, but my therapist tells me this is the future of pain management. Not to the exclusion of meds and other material forms of therapy, but this will become increasingly important as a tool in fighting CP.
If I ever learn to do this I'll let y'all know.
steve
cmpgirl
08-08-2008, 03:56 PM
Sammy, This is a great question. I guess I've wondered myself, but never asked. Over the years, I know I have learned to live with pain levels that would probably have some people (non-CPers) in the hospital. I think most of us do, even if we don't realize it.
When you think about it, most of us have had a time (or many times) where our pain has been or is under-treated. Some poor souls have none at all, God Bless them. I know there are people who believe that pain meds actually lower our pain thresholds (I've seen it written in articles) but based on my own experience, I'm not sure if I believe that. I guess the only way to prove that to myself would be to completely detox off my meds, live with the pain, unmedicated for a while, and then go back on the meds. That is not something I would ever want to do!
Excellent thread! I am looking forward to hearing what everybody thinks. Hugs, CMP/MM
When you think about it, most of us have had a time (or many times) where our pain has been or is under-treated. Some poor souls have none at all, God Bless them. I know there are people who believe that pain meds actually lower our pain thresholds (I've seen it written in articles) but based on my own experience, I'm not sure if I believe that. I guess the only way to prove that to myself would be to completely detox off my meds, live with the pain, unmedicated for a while, and then go back on the meds. That is not something I would ever want to do!
Excellent thread! I am looking forward to hearing what everybody thinks. Hugs, CMP/MM
hessie28
08-08-2008, 04:01 PM
I think you do get use to it. People always say to me that I am always smiling and they would never know I am in pain. Plus I try to do alot of things I shouldn't do. I told someone the other day that pain to me is just like breathing to me. It is something that happens everyday and you live with it. I do complain sometimes. But, I can't change the pain. I hope it will get better some day. But, the doctors are not giving me much hope that it will get better. So I figure I have to live with it or curl up and die. So I live with it. Pain is such a normal part of my life. Sounds a little sad but it is what it is. I try to remember back to a time where I wasn't in so much pain and when I use to take long walks and do almost everything.
sammyo1
08-09-2008, 08:31 AM
Wow I am surprised already by some of the responses. Hessie I will have to work to become more like you.
Steve you are very deep indeed, & correct. I feel the same. I cant accept this but expect it.
This morning is a prime example of what I am speaking of. I am up 7:ooam after no sleep, I am in enough pain to shed a few tears & feel abit down because I did not expect this after the ESIs & ribs being done. Last year I would have been sobbing & devastated thinking I went through all that for nothing. I do not even realize any more that a few tears escape until I feel them on my face. I just go on with my day now, while in the past this pain level would have had me just sitting sobbing & scared. That is what I am talking about.
I have my days where even though I can handle the pain level that would have brought me to me knees, I dont want to, I am sick of it & yes Steve feel cheated! I think I have always helped others, you know the kind to stop & help anyone I see in need so why is this happening to me? I get pretty angry at times. Then I realize it could be worse. At least I am learning to function with this pain. I told the nurse that called after my ESIs that the PM asked why I had to work, I told her I dont get why he or othe doctors dont understand why I want to & at this time have to. If I give that up I will give up a part of myself I am in no way ready to give up. I will feel empty & useless. She understood, thank god.
I think of all of you & it helps me get through morning like this.
LIke you pepper with younger children & suffering so. Breaks my heart & I think to myself I could be in your shoes so I try to gain strength from all of you. I feel ashamed sometimes that I feel self pity after reading how you all are suffering so.
I was curious to see what you all had to say. Last year at this time I would have rated the pain I have this morning as a 9, today since I know it could be worse I rate it at a 7 & have learned to just keep moving. I hope this all makes sense & am really enjoying all your different responses & views. God bless, Sammy
Steve you definantly have a way with words, you have said somethings that I wanted to say but did not know how to even put into words.
Steve you are very deep indeed, & correct. I feel the same. I cant accept this but expect it.
This morning is a prime example of what I am speaking of. I am up 7:ooam after no sleep, I am in enough pain to shed a few tears & feel abit down because I did not expect this after the ESIs & ribs being done. Last year I would have been sobbing & devastated thinking I went through all that for nothing. I do not even realize any more that a few tears escape until I feel them on my face. I just go on with my day now, while in the past this pain level would have had me just sitting sobbing & scared. That is what I am talking about.
I have my days where even though I can handle the pain level that would have brought me to me knees, I dont want to, I am sick of it & yes Steve feel cheated! I think I have always helped others, you know the kind to stop & help anyone I see in need so why is this happening to me? I get pretty angry at times. Then I realize it could be worse. At least I am learning to function with this pain. I told the nurse that called after my ESIs that the PM asked why I had to work, I told her I dont get why he or othe doctors dont understand why I want to & at this time have to. If I give that up I will give up a part of myself I am in no way ready to give up. I will feel empty & useless. She understood, thank god.
I think of all of you & it helps me get through morning like this.
LIke you pepper with younger children & suffering so. Breaks my heart & I think to myself I could be in your shoes so I try to gain strength from all of you. I feel ashamed sometimes that I feel self pity after reading how you all are suffering so.
I was curious to see what you all had to say. Last year at this time I would have rated the pain I have this morning as a 9, today since I know it could be worse I rate it at a 7 & have learned to just keep moving. I hope this all makes sense & am really enjoying all your different responses & views. God bless, Sammy
Steve you definantly have a way with words, you have said somethings that I wanted to say but did not know how to even put into words.
10sox
08-09-2008, 02:10 PM
I agree with a lot of the others. The pain that I feel is probably the same strength that kept me on the couch a few months ago. But now I realize the pain is not going away and I need to be a mom to my two and three year old. It breaks my heart when they see my crying. My two year old says, "mommy stop cwyin" when I don't even realize there are tears down my face.
I also have come to expect my pain. If I go to the zoo with my kids, yes I am going to be in severe pain for that day and the few days following. I used to get very anxious about the pain. I think that anxiety is lessening because I am starting to expect it. If I go food shopping, I know my pain will be there, so instead of getting all worked up and worrying about it, I just go now and take my pain pills to make it through.
I am done trying to fight the pain....meaning, fight taking the pain pills. I have learned the pain is out of my control. I have two choices, lie on the couch all day or manage my pain with pain pills and be a mom to my children.
Thanks for starting this thread. It is very interesting to read peoples perspectives on this.
I also have come to expect my pain. If I go to the zoo with my kids, yes I am going to be in severe pain for that day and the few days following. I used to get very anxious about the pain. I think that anxiety is lessening because I am starting to expect it. If I go food shopping, I know my pain will be there, so instead of getting all worked up and worrying about it, I just go now and take my pain pills to make it through.
I am done trying to fight the pain....meaning, fight taking the pain pills. I have learned the pain is out of my control. I have two choices, lie on the couch all day or manage my pain with pain pills and be a mom to my children.
Thanks for starting this thread. It is very interesting to read peoples perspectives on this.
forginon
08-09-2008, 06:41 PM
...I will feel empty & useless...
Sammy,
I know how this is.
I remember after suffering 9 months with undiagnosed Celiac disease. This condition results in the villi in the small intestine being destroyed, so your body cannot take in nutrition. And it is so very painful. I had lost 89 pounds. I had the runs for all of the 9 months. I could no longer eat it was so painful. And I felt useless and empty. Maybe a better word is "spent." I had no more to give. Not even to complain. I couldn't even cry any more. I was in the hospital and no one knew what to do. I was shutting down, and my survival was in question. I was encouraged to fight, but I had nothing to fight with. I didn't necessarily want to die, I didn't have enough energy to even care. Empty and useless is a great description Sammy.
...you definantly have a way with words, you have said somethings that I wanted to say but did not know how to even put into words....
I graduated with a "BS" from college - pretty big coincidence, eh?
steve
Sammy,
I know how this is.
I remember after suffering 9 months with undiagnosed Celiac disease. This condition results in the villi in the small intestine being destroyed, so your body cannot take in nutrition. And it is so very painful. I had lost 89 pounds. I had the runs for all of the 9 months. I could no longer eat it was so painful. And I felt useless and empty. Maybe a better word is "spent." I had no more to give. Not even to complain. I couldn't even cry any more. I was in the hospital and no one knew what to do. I was shutting down, and my survival was in question. I was encouraged to fight, but I had nothing to fight with. I didn't necessarily want to die, I didn't have enough energy to even care. Empty and useless is a great description Sammy.
...you definantly have a way with words, you have said somethings that I wanted to say but did not know how to even put into words....
I graduated with a "BS" from college - pretty big coincidence, eh?
steve
Toonces1
08-09-2008, 08:20 PM
I think steve said it perfectly. I have only had pain for about 10 months now, and I know some of you have had it for decades. For me, 10 months feels like years. I would agree with some of the others that I expect the pain, but I don't know if I have gotten used to it. It still sometimes feels so foreign to me, but at the same time, it is just a part of my everyday life.
friendly_one
08-10-2008, 12:21 PM
Hi All,
Well, for me, pain is all I've ever known. All of my surgeries and pain started when I was 9 years old. I'm now 37 and 70+ surgeries (including the removal of my left kidney) & 400+ kidney stones later, I guess you could say that pain is part of my being. Does that make sense??? I don't know life any other way. I guess I'm fortunate in that sense, because I have nothing to compare to. I think it would be much harder if I knew what a "normal life" was.
I've always had a high pain threshold, always. When I was 6 years old, I broke my arm in 2 places. I cried a little (very minimal tears) and said my arm hurt. Well, 2 days later, my Mother took me to the ER and sure enough, it's broken. She was shocked, to say the least!! She broke her arm at the same age and cried bloody murder. She (and my Father) felt insanely guilty for not getting me to the ER sooner, but, I didn't really complain about it. Go figure.
I guess that incident would set me up for what would come 3 years later.....kidney stones!! Again, my Parents were completely shocked!! They couldn't believe a child could get stones. My Mother's Brother & Father both had a few stones, but they were older men. That's who gets stones, so my Parents thought. Supposedly, stones are the worst pain known to mankind. Women say childbirth is a cake walk compared to kidney stones.
That night, back in October of 1980, would completely change all of our lives forever. I feel so guilty in what my pain and surgeries have done to my Parents and Brother. I've literally made my Mother crazy from all of this (she's been by my side through every surgery...she's so much better now, thanks to Zoloft) and completely alienated my Father and Brother. My Father doesn't know how to handle it (so, he shuts me out) and my Brother got the short end of the stick when it came to my Parents attention. He's 6 years older than me. Everything revolved around me. To this day, are relationship is strained. We rarely talk, eventhough he lives just 30 minutes away from me. I know he hated how my parents treated me, and I can't blame him for being jealous. Ironically, I'm jealous of him because he's never been sick a day in his life!!
Anyway, I guess the physical body does get used to the pain overtime, but definitely NOT the mind. I'm not going into any details over that....it's just too dark of a place. I'm just going to say that it got very, very bad....3 total nervous breakdowns and other things.
Ok....enough rambling!! I just thought I would add my feedback. I'm so used to the pain and surgeries (although, I'm done with the surgeries and just waiting for my only kidney now to completely fail and be done with the pain forever) that I have a hard time seeing myself without pain. How sick is that?!?! Bye for now!! ;)
Shay :angel:
P.S. I just wanted to add that I do think pain makes us stronger. I managed to graduate High School (with honors) without being there half the time. Then, I graduated from community college with an Associates Degree (with High Honors) and a member of Phi Theta Kappa (an international honor society of the 2 year college). Lastly, I graduated from a very highly recognized University (Texas A & M) with a BS degree (Magna Cum Laude)...basically, High Honors and a member of Alpha Chi (another honor society limited to the top 10% of the Universites juniors & seniors). Again, I wasn't there most of the time due to pain and surgeries, but my Professors understood the situation and let me get by without being in class most of the time.
Don't get me wrong, I still did ALL the work and tests, I just wasn't able to attend class most of the time. They NEVER let me "slide" concerning assignments and tests, not one bit!! As most people know, if you miss a certain percentage of class time in college, you fail. But, with all my documentation and everything, I was able to prove to them I COULD do the work and tests, I just had a hard time attending class. So, my friends would take little tape recorders to classes and record the lectures. Then, I would show up for test dates and turn in any assignments, on time.
I believe all the pain and surgeries I went through made me a better student, person, and friend. I never took anything for granted. My plan was to attend Medical School, but there was absoultely NO WAY I could have. You can't miss any days or class time. I often think about where I would be today, if I could have gone to Med School. I would definitely have gone into PM or anesthesiology specialties. I would have so much empathy for my patients.
Oh well. I can't dwell on that. It's too depressing. My life is what it is, and I can't change that. All I can do is try to "live" my life with what time I have left. My docs estimate between 1-2 years of life expectancy. It just depends on how quickly my only kidney now goes downhill. Ok...enough for now. Talk to ya later! :angel:
Well, for me, pain is all I've ever known. All of my surgeries and pain started when I was 9 years old. I'm now 37 and 70+ surgeries (including the removal of my left kidney) & 400+ kidney stones later, I guess you could say that pain is part of my being. Does that make sense??? I don't know life any other way. I guess I'm fortunate in that sense, because I have nothing to compare to. I think it would be much harder if I knew what a "normal life" was.
I've always had a high pain threshold, always. When I was 6 years old, I broke my arm in 2 places. I cried a little (very minimal tears) and said my arm hurt. Well, 2 days later, my Mother took me to the ER and sure enough, it's broken. She was shocked, to say the least!! She broke her arm at the same age and cried bloody murder. She (and my Father) felt insanely guilty for not getting me to the ER sooner, but, I didn't really complain about it. Go figure.
I guess that incident would set me up for what would come 3 years later.....kidney stones!! Again, my Parents were completely shocked!! They couldn't believe a child could get stones. My Mother's Brother & Father both had a few stones, but they were older men. That's who gets stones, so my Parents thought. Supposedly, stones are the worst pain known to mankind. Women say childbirth is a cake walk compared to kidney stones.
That night, back in October of 1980, would completely change all of our lives forever. I feel so guilty in what my pain and surgeries have done to my Parents and Brother. I've literally made my Mother crazy from all of this (she's been by my side through every surgery...she's so much better now, thanks to Zoloft) and completely alienated my Father and Brother. My Father doesn't know how to handle it (so, he shuts me out) and my Brother got the short end of the stick when it came to my Parents attention. He's 6 years older than me. Everything revolved around me. To this day, are relationship is strained. We rarely talk, eventhough he lives just 30 minutes away from me. I know he hated how my parents treated me, and I can't blame him for being jealous. Ironically, I'm jealous of him because he's never been sick a day in his life!!
Anyway, I guess the physical body does get used to the pain overtime, but definitely NOT the mind. I'm not going into any details over that....it's just too dark of a place. I'm just going to say that it got very, very bad....3 total nervous breakdowns and other things.
Ok....enough rambling!! I just thought I would add my feedback. I'm so used to the pain and surgeries (although, I'm done with the surgeries and just waiting for my only kidney now to completely fail and be done with the pain forever) that I have a hard time seeing myself without pain. How sick is that?!?! Bye for now!! ;)
Shay :angel:
P.S. I just wanted to add that I do think pain makes us stronger. I managed to graduate High School (with honors) without being there half the time. Then, I graduated from community college with an Associates Degree (with High Honors) and a member of Phi Theta Kappa (an international honor society of the 2 year college). Lastly, I graduated from a very highly recognized University (Texas A & M) with a BS degree (Magna Cum Laude)...basically, High Honors and a member of Alpha Chi (another honor society limited to the top 10% of the Universites juniors & seniors). Again, I wasn't there most of the time due to pain and surgeries, but my Professors understood the situation and let me get by without being in class most of the time.
Don't get me wrong, I still did ALL the work and tests, I just wasn't able to attend class most of the time. They NEVER let me "slide" concerning assignments and tests, not one bit!! As most people know, if you miss a certain percentage of class time in college, you fail. But, with all my documentation and everything, I was able to prove to them I COULD do the work and tests, I just had a hard time attending class. So, my friends would take little tape recorders to classes and record the lectures. Then, I would show up for test dates and turn in any assignments, on time.
I believe all the pain and surgeries I went through made me a better student, person, and friend. I never took anything for granted. My plan was to attend Medical School, but there was absoultely NO WAY I could have. You can't miss any days or class time. I often think about where I would be today, if I could have gone to Med School. I would definitely have gone into PM or anesthesiology specialties. I would have so much empathy for my patients.
Oh well. I can't dwell on that. It's too depressing. My life is what it is, and I can't change that. All I can do is try to "live" my life with what time I have left. My docs estimate between 1-2 years of life expectancy. It just depends on how quickly my only kidney now goes downhill. Ok...enough for now. Talk to ya later! :angel: