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

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    Thank you dejerine for that enlightening explanation, and I truly hope allenstevens really reads your post, and gets something out of it. I fought pain for years before receiving much for pain, then when the pill game really started, it took a few more years before I was sent to a pain clinic. One of the things that makes me the maddest is the group of people that think we enjoy taking these medications. What I wouldn't give to have a real medication to treat this kind of pain! Not a cocktail of different drugs.....including opiates. I'm grateful for them, and hate them the most. I hate being drug tested like some common criminal. I resent the thoughts that a lot of people have about someone who is taking pain medication. That we take them because we want to, and enjoy it! I think I hate that the most.

    This thread was started for people in pain 24/7. People that don't get a three day break on pain. I don't remember what it feels like to NOT feel pain all of the time. I know "regular" pain hurts, but since having cp and neuropathic pain........for me there is no comparison. Not until you sit for days rocking back and forth with silent tears falling, and a wastebasket close by for the nausea......not until you have to live like this, can you talk to me about pain. You can ask questions, but don't suggest you have the answers to something you don't understand.

    I can only hope you really do read and understand what dejerine has written here, and any others that think they know the answer to our pain issues. I could go on and it's not only changed our lives, but changed us, until we are no longer who we use to be, and I'm talking about pain changing us.....not the drugs...... Do you know what it's like to dread a change in the weather? I'm sitting here in sweats and wrapped in a big sweater, no socks, I can't stand them on my feet, and no blanket because I can't stand the weight of it and I'm shivering. The thermostat is set on seventy, any warmer than that and I can't breathe, and once I get this cold it takes forever to get warm again. And did I mention, I'm burning so bad I'm sick to my stomach!


      Hi Smoky

      Nice post you made.

      Although I am glad they have begun to chart the 1-10 pain rating in hospital charts, that system does not really apply to central pain. Your post illustrates why it fails.

      Is a sack of groceries heavy? Rate it 1-10. Implied in this question is the assumption, a very big assumption that one would either simply heft the sack of groceries, or possibly even carry it from the car to the house. So if I ask if a sack of groceries is heavy, the listener has a context to understand the question. This context loads the question to a degree that it must be factored in, and NOT ignored.

      What if, however, the sack of groceries is to be carried across town. It is surprising how heavy a sack of groceries can become after only a couple of blocks. What if the sack is to be carried across the plains. What if the sack is to be carried wherever one goes for the rest of their lives. The old tale of Sysiphus who had to keep rolling a stone up a hill over and over again comes to mind.

      When trying to consider CP, one simply must include the awareness that the person has this pain ALL THE TIME. The spontaneous burning dysesthesia is ALWAYS PRESENT. For whatever reason, one does not GET USED to the pain. Instead, they shrink a little bit every day. Pain is powerful. Like it or not, something of the personality is progressively eroded until as S. Weir Mitchell remarked about his bravest captain wounded in the neck in the Civil War, "He developed the temperament of the most nervous girl". Can any of us remember what we were like before Central Pain? I doubt it. The alien burning has taken over our sensorium, and hijacked our identity.

      Now of course the burning dysesthesia can be made worse by the things you mention, such as temperature change and light touch. This evocation, terrible as it is, is not THE FUNDAMENTAL PAIN, it is rather the exacerbation of the spontaneous pain which is already there. However, the huge jump in severity can make one think of the two pains as separate phenomena, but they are not. You already know this. I am just suggesting how I have come to articulate things.

      You remember the old tale about the princess with the pea under the mattress. She could feel this pea under several mattresses. I am like her. Let the slightest ripple be present in the sheet and it feels like I am sleeping on a rock. This is a ridiculous level of sensitivity, beyond belief or comprehension but there it is. Let the slightest blast of cold air hit my legs or feet and I am shrinking from it at once. The chronic and durable nature of burning dysesthesia is not as intense as the shooting lancinating pains which intermittently occur, but the burning dysesthesia is off the scale because it is always there. This is the problem with the 1-10 scale. It fails to take into account that the pain never stops. After a while, you can go looney. And of course the inability to wear clothing on the distal areas convinces you that you are indeed looney.

      Now having discussed the durability of the pain, let us next consider surface area. If I touch the stove and burn the tip of my finger, no one would doubt that the pain felt is quite intense. It is, as they say a 10. However, if I am caught in an inferno and experience a burn over my entire body, we are in another dimension. The hospital will put me into a medically induced coma so I do not have to experience the dreadful suffering. Unfortunately, Central Pain patients also typically have it over a very large area of the body. The surface area matters.

      There is no provision in a 1-10 scale for the amount of surface area. If there were, the nurse would ask how bad is the pain 1-10 and how much of your skin is involved, 0-100 %.

      Then of course we get into the muscle pains (kinesthetic dysesthesia), the visceral pains such as pain of bladder filling, and realize that we need even a third scale.

      Beyond the surface area pain, how is the pain in your muscles and bladder? While we are on it, please factor in those intermittent shooting pains. How bad are they? And so it goes.

      Beyond even this are the musculoskeletal pains most of us have from injury or surgical changes in the motion segments of the spine, which doctors call nociceptive pain. Maybe those are what we hope to address.

      How many scales do we need. Let's see. One for intensity, One for durability, One for surface area, One for levels within the body, One for ordinary musculoskeletal pain, One for the intermittent lancinating electric shocks. Sorry I ran out of paper. You know, actually I don't understand any of this. Could we start over? Oh, never mind, just answer the question. How bad on a scale of 1-10 is your pain? I have to fill out this form so the doctor can see you. He doesn't have all day. See that man over there, he has cancer. His pain is terrible, and he has been waiting a long time. I can hardly bear to look at him because I know he is in such pain. He used to come in here in tears before we got him on meds.

      And so we ask the skeptical Mr. Stevens, which of these pains exactly do you think we are faking. Was it really necessary to invent all of these complicated pains, just to get a pain pill. Or would we simply have claimed severity in one single pain, in order to get meds, if we were drug seekers. Would we have told you something fantastic, such as that COLD air or LIGHT touch makes our skin BURN if we were trying for credibility, as drug seekers inevitably are?

      I am a drug seeker of the first order. I am seeking a drug for my central pain. Unfortunately there is nothing for it, so I have quit seeking. Yet, I still have the pain. What does the skeptic make of that?

      I am not trying to single out Mr. Stevens, since I have encountered and do encounter board certified specialists in the whitest of coats who don't really believe the pain is there. Or if it is there, suspect that it is pretty much the same as low back pain, which, as it happens, many of those same examiners, or their relatives, some of them aged, bravely endure without becoming drug seekers. Should we not emulate their righteous example! Have I told you about my grandmother with her arthritis. Now that woman has pain! And she still sews quilts for the grandchildren. Or the time I sprained my ankle and could not play racquetball for weeks. The vicodan should fix you right up.

      And who can blame them for adopting this attitude. There is not even a vocabulary by which I can accurately describe my pain. Without a vernacular how convincing can any of us really be. Words must be rooted in some shared human experience before anyone can understand. And who has experienced Central Pain except those who actually have it. Having had ordinary pain is no preparation for understanding Central Pain. If anything it prevents awareness that something physically unbearable beside what is called pain, is out there.

      Er, Mr. Stevens, trust me, the dysesthesia is too much, more than I can bear.

      Huh? dysesthesia?? That doesn't sound so bad. What is the big deal?

      Oh, sorry I mentioned dysesthesia. I meant pain. Now, will you believe me? Or will you say, as the ER doctor in Pontiac Michigan said of Bette Lou Hamilton when Jack Kevorkian placed her dead body at the door. "I don't believe she really had pain". Ms. Hamilton had had ten surgeries to try to get rid of her central pain. On the dead scale, she gets a 10. Not really a drug seeker, I would say. I wonder if her death stands for anything. Not in the mind of the ER doctor, it would appear.

      FWIW, on the skeptic scale, I am giving you a 9. I could be wrong of course. These things are not all that accurate. Nothing to worry about in any event. A little capsaicin subQ should make you right as rain. Do you prefer inside your mouth or would your nose be better, just the tip there. You know, we have a lot of this stuff and it is going out of date. How about your entire body.

      P.S. Please note that in telling this little story, I am not denigrating the pain in cancer patients, which often includes peripheral neuropathic pain from nerve damage due to irradiation or chemo. Instead, it is the haste of the nurse who fails to apprehend that central pain is unique, as her charting system tries to put square pegs in round holes. Central Pain may be very much the big brother to the PNI pain of the cancer patient. Pain from metastases which impinge on nerves is severe, but often finds some relief in opiates.
      Last edited by dejerine; 25 Feb 2014, 6:49 PM.


        Once again I'd like to say thank you for the very informative posts, I wish I was able to explain my troubles with CP that well. I've been up since 1130 last night giving me a total of about 6 1/2 hours of sleep combined for the last two nights 'cause of my pain.

        Which brings up a question you might be able to help me with I understand the relentless nonstop burning. However what's confusing me is I have severe cramping in my lower abdominal/bladder area so what I'm wondering is can that be considered CP or would that fall under a different pain category? Hopefully that makes some sense.
        Courage is being scared to death but saddling up anyway. .(John Wayne)


          Once again I'd like to say thank you for the very informative posts, I wish I was able to explain my troubles with CP that well. I've been up since 1130 last night giving me a total of about 6 1/2 hours of sleep combined for the last two nights 'cause of my pain.

          Which brings up a question you might be able to help me with I understand the relentless nonstop burning. However what's confusing me is I have severe cramping in my lower abdominal/bladder area so what I'm wondering is can that be considered CP or would that fall under a different pain category? Hopefully that makes some sense. Last night I was ready to get up this morning and open every pill bottle I have and down them all at once!
          Courage is being scared to death but saddling up anyway. .(John Wayne)


            Dejerine as always thank you.

            tomorrow I'm in NYC with my Neurosurgeon (post surgical visit) and my Pain Doc. Haven't had an MRI in ~ 8-9 years and they want one to see why I'm deteriorating

            I think the single event with the pain doc that gave me 100% confidence in her was after my first eval and review of my records she took my hands and with great sadness and tenderness looked me in the eye and said I am so sorry, you know there is nothing for CP. That said she has helped tremendously with some of other pain modalities and SCI complications. When I see her I always get a hug she says it is likely the best thing she can do besides telling me she'll never give up searching.

            Valium is my drug of choice and they are trying to take it away (her assistant) fear of OD?? not sure. tomorrow I'll ask for my full prescription back, I don't know her to have ever refused me anything. Is there some valium issue I don't understand? They'll give me opiates by the bucket but also do nothing for me so take none.

            I can't remember 61/2 hours sleep happy with 3 nd fatigue is another enemy. Sigh turning into a rant. good luck to all



              Bollefen, I cannot give you medical advice, but I notice a caution with the number of suicides and accidental deaths in which valium and alcohol are combined with other drugs. The issue with all controlled drugs is that clinics risk being targeted by regulatory agencies if they appear to give out a disproportionate number of drugs. The head of the pain clinic here has almost monthly meetings with the regulators, but so far has been able to continue his practice. A very cool guy, who listens.
              Last edited by dejerine; 25 Feb 2014, 6:37 PM.



                This area is poorly described. Most specialists would be reluctant to say whether certain bladder pains are peripheral or central in origin. Since I did not have this prior to central pain, I am inclined to believe it is part of central pain. You will not find that in the literature however.

                Is your pain IN the bladder, and is it associated with or relieved by urination? Or is it GENERALLY in the area of the bladder. There are a lot of structures there in that area so it would be helpful to pin it down. As always, you should rely on your personal physician and not the internet and certainly not me. If I read Dr. Young correctly, and he has a ton of experience with SCI patients, maybe a good place to start would be to rule out urinary infection if you think the bladder does not feel normal.
                Last edited by dejerine; 25 Feb 2014, 6:54 PM.


                  Bollefen, that is the sound of a really good doc. Good for her. Straight shooter. We need more like her. If you are like many CP patients, you will take the hug, even if it burns a little.

                  She probably gets booed down at meetings. Docs have an extremely hard time admitting helplessness. Hard core scientists, who ordinarily demand prospective studies and statistical blind studies often revert to anecdotal type evidence (we used to call it "out the back of the conestoga wagon in the cornfields of western Kansas" type evidence) when people tell them there is no satisfactory treatment for severe CP. "I have this one patient, who....."

                  I do have some hope at the benefit reported by people like Arndog. I have no doubt that opiates are helping him, I just don't know why they don't help those I know with CP. Arnie is a lot smarter than I am and he typically catches details in posts that I miss. I have to go back and say, "Was that there?". Sure enough, it is there. He even notes things in my own posts that I don't remember I said! He is a good clinician. Fine eye for detail.

                  At my clinic they don't mess around. They give huge doses of opiates IV to test CP patients. Early on they were publishing that failure to respond just meant the dose was too low. Now, they have stopped publishing that and they sit quietly, pondering how they came to the prior conclusion.

                  And as always, I am pulling for you. You are me. Except that you have way more photographic framing and composition ability. Really exceptional. Your colors and shading are the best part. All the colors in your photos match and are harmonious, in all areas, even of structures that have no functional relationship to each other. Very artistic. Very hard to achieve. Reminds me of the early Gauguin paintings.
                  Last edited by dejerine; 25 Feb 2014, 6:44 PM.


                    how do you all cope, I don't know how I'm going to keep doing this..
                    Courage is being scared to death but saddling up anyway. .(John Wayne)


                      I've got the same question as I need to improve the quality of my life as it is today. Fantasizing about ending my life does not improve the quality. Really, any coping suggestions would be greatly appreciated.


                        Originally posted by Cowboys_Place View Post
                        how do you all cope, I don't know how I'm going to keep doing this..
                        I'm alive because I have no way to change that. Even if I did, my damn survival instinct would probably keep me from making use of it. However, I'd still like to have a way, just so I know I have one should the time come when I desire to use it. My nightly wish sure isn't working.

                        I don't think I'm coping, even though my therapist thinks I am. I have no life, certainly nothing like all of you seem to have. I do admire you guys and gals.

                        Proofread carefully to see if you any words out.


                          Hi Bollefen, Dejerine, cowboy,smokey, dragon fly, Alan and everyone who reads this.. Just checking in to say hello.

                          Dej- thanks for your incredible descriptions of bad pain 24/7 -the grocery bag description was new for me - your descriptions are so humorous - I hope it is okay to say I enjoy them.
                          A lot of it is 'affirmation' of what people here experience, just like Bollefen's doctor did at the beginning of her visit with him.

                          Bollefen - I think the reluctance with valium as compared to opiates is that valium withdrawal is life threatening whereas opiate withdrawal is miserable but not life threatening.

                          I quit trying to explain anything to the pain management specialist. He is in another world, or should I say I am in another world, a parallel universe from him.

                          I am concerned about the direction of US medicine and the war on opiate misuse will create collateral damage on true chronic pain sufferers, limiting access.
                          Dej - the bright side for lack of opiate response is that you won't have to worry about this.

                          Cowboy - do you have some distraction that helps? Listening to really loud music, TV shows ( I am a fan of Battle Star Gallactica rent the whole thing and '24' - all 8 seasons), I can't read when I am suffering greatly so books don't help. Going outside always helps, at least in the beauty of western US - I am not sure where you live.

                          I am glad that CC is back up and running.


                            arndog, yes I have a few distractions that I try to keep my mind occupied with music, movies, car rides on the roads of beautiful Northern California and occasionally gambling :-)
                            Unfortunately as everyone here knows all too well when the pain is unbearable it's impossible to find something too distract your brain from what's happening to your body!

                            On another note you mentioned that Valium can be life threatening whereas opiate withdrawal is just miserable, why is valium withdraw life threatening? Six years ago I started taking Gabapentin (sp) and hydrocodon then switched to lyrica and oxycodon. Recently I stopped taking oxycodon and switch to Valium twice a day which seems to have helped with the severe cramping in my abdominal area not to mention I've been sleeping much better :-)

                            I hope and pray everyone has been having even just a little reprieve from their pain!!
                            Courage is being scared to death but saddling up anyway. .(John Wayne)


                              I read this and it hit home. I mask my pain, smile,lie, try be a good Boy Scout but the pain is so bad at times I am not sure how my wife tolerates me. She sleeps in a different room, so not only no sex (not that I can even get it up) but no comfort of another's touch when alone and most vulnerable and needy. The pain, the loss of my life, the man I am no longer, the husband, father, grandfather, valued favorite uncle, all gone. I hate the pain and I hate the loss. Last nite was the worst, I swore today was the day to exit but I don't have the balls and don't want to make it worse if I fail. Thanx for letting me rant, I don't feel any better but ...........


                                Hi Arndog

                                Yes, I don't have to worry about opiate withdrawal and I understand your humor. It reminds me of the skit on Saturday Night Live when they talked about the "advantages of being blind". The main point was how blindness enhances the other senses, such as smell. To which the blind person says, "Are you kidding? Enhanced senses? Yeah, like how bad my seeing eye dog's fur smells when it rains!"

                                We could make a long list about the advantages of Central Pain:

                                Experiencing an ephapse

                                Having a chapter in the Textbook of Pain devoted to us, also no chapters devoted to us, nor even a mention of us in Adams and Victor's Textbook of Neurology which all our neurologists rely upon, base their concerns on, and will view our story through.

                                Following Doctor House better when he diagnoses synesthesia

                                Not overfocusing on the paralysis/weakness/sensory loss thing

                                Early to bed, early to rise, early to not being able to go to sleep and to multiple sleep interruptions during the night

                                Less fixation on clothing because it all hurts

                                Not having to ponder "Invisible touch", light touch being a heavy for us.

                                Knowing that if the car A/C fails that it's okay because no more blasts of cold air on the skin.

                                Thinking how great it is to have a proximal body when the distal parts burn so much

                                Dysesthesia, the seventh sense nobody else has

                                Less suspense about what hell would be like

                                The satisfaction of knowing that the electric shooting pains do NOT mean we have tertiary syphilis (very hard to explain to the wife), because it's just the Central Pain (even harder to explain).

                                Knowing there are six whole people at NIH researching basic pain, less than those monitoring the safety of bubble gum flavors, but still, six people is six people. It adds up.

                                We get to swear on Grange's thread and no one stops us because we're all crazy anyway.

                                We know what tomorrow will bring

                                Since the only ones cured of Central Pain are a few with expanding syrinx, we can always be optimists and figure if we get a syrinx, we have got a chance. (As in Jim Carrey's chance at a date in Dumb and Dumber)

                                Learning to speak in analogue, such as "How much do you like that chocolate shake on a scale from 1 to 10?". With this background, I expect to be a guest judge on Dancing with the Stars any day now. Their habit of no costumes already fits my preferred type of dress.
                                Last edited by dejerine; 2 Mar 2014, 10:41 PM.