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Very nervous about next doctor's appointment. Almost in tears.

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24

Comments

  • dilaurodilauro ConnecticutPosts: 13,186
    edited 01/30/2015 - 7:22 AM
    Pain management Is in fact a Total approach

    There is not just one piece to it. Like I said before, thinking only in terms of pain medications, narcotics, cannabis is not the answer.
    There are thousands of other chronic pain sufferer who live day by day understanding that there is in fact a total approach.
    No one has tried everything, no one there are so many different approaches to pain management, both eastern and western views. When someone can honestly tell me that they have exhausted every possible avenue, then, my next statement to them, would be try again.

    Without that, well, one could always live their lives in never never land, not feeling or understanding. But thats not what the majority wishes to do.

    We all fight for ourselves, fight for the right to enjoy the next day and the day after that.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • dilaurodilauro ConnecticutPosts: 13,186
    To totally manage pain, one does not have to to start at some high level of medications before they can start to utilizes all the other modules. In fact, most doctors and pain journals will indicate that the total approach is even more important at the beginning.

    If one allows themselves to regulate their pain solely on narcotics from the start, then it is so very difficult to get that same patient to incorporate everything else.

    For example, if you have severe pain and are treated with narcotics and that takes away the pain, what incentives would you or anyone have to try anything else? What you want from the outset is the total package, because after all that is what you or I would normally be living with. This way we can learn about the different approaches, treatments, what works best, what needs to be tweaked, etc

    After several years of chronic thoracic problems, I turned towards eastern medicine as an outlet. One of the first approaches was relaxation and aroma therapy. There are over 30 different types of essential oils, all which have specific properties and can address different problems. I tried many before I found one that together with relaxation techniques, music therapy, semi-meditation did what no chemical drug could do.

    If I depended only on narcotics only even if to start with, I doubt seriously if I would be able to moderate these forums.

    But Aaron, as your doctor says, It is a process and it starts from ground zero.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
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  • TarenTTaren Posts: 524
    edited 01/30/2015 - 9:00 AM
    boardn, you say, "I can't even go to NY with my wife and daughter tomorrow cause of the pain. Stuck inside. Can't stand too long due to foot nerve pain. Sitting in a car too long is hell on earth."

    How do you know you can't go out "tomorrow" with your family?? Do you already know what your pain levels are going to be 24 hours from now?? In my honest opinion, you are concentrating way too much on opiates-sounds like you don't want to entertain the thought of trying anything else. There really are other ways to help your pain but, honestly if it doesn't create any sort of euphoria you don't seem interested. We have all given you really good advice, its too bad that you are not more receptive to it.
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    While I practice all means of the blend and I was not saying anything against it , i was only stating spine pain is not intractable pain such as CRPS or many other that in fact do require pain meds to begin the rehab process for many cases, which is part of the blend. There are disorders out there that the only treatment is pain management unfortunatly. I am not speaking eastern, but western theory.
    I think most people are working to get off meds , even if they work due to side effects . I have read many pain journals and have not seen this for certain conditons that are intractable, you need the meds to get them moving and rehabbing as its very important early on . Again i am not talking about spine pain.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    "My doctor's say it is a process, like an auto immune condition, that can't be shut off.
    Believe it or not, this all started soon after I had Ulnar entrapment surgery. However, which came first, the chicken or the egg. I had arm pain before surgery. Now I have the foot pain that can feel like my feet are burning off. My hands and arm, especially left arm can turn blue or become cold as ice. You name the specialist, therapist and I have seen them.
    Even typing is so pain ful in that arm. Working in computers, that sucks."

    You have to realize the people here are speaking mostly from a spine pain managment perspective, but there are conditions that require high pain medication and then you can start to do "the blend". I am not a doctor but when you mentioned you cannot turn it off, you had ulnar entraptment surgury, your hands turn blue, the pain spread to feet after surgury and the comment below:
    " I have even though if I had the arm amputated, I may be better off. "

    Have no doctors mentioned CRPS or some kind of autonomic disfunction ? Those symptoms you listed are consistent with that and often ulnar nerve entrapment can trigger. I would look it up and read about it, if it fits your case speak with dr about it . Its tough to diagnose, but early treatment is best . Pain that does not shut off , burns terribly or has no ups and downs on levels is not typical chronic pain.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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  • Name one....i have tried it and almost went broke trying to get help. I can afford all of the alternatives, especially all the eastern methods I tried. Then try to find answers, spend all that time while you drift away from your family because you can't function, your mind is dealing with pain, can hardly worK....t
    dilauro said:
    Pain management Is in fact a Total approach

    There is not just one piece to it. Like I said before, thinking only in terms of pain medications, narcotics, cannabis is not the answer.
    There are thousands of other chronic pain sufferer who live day by day understanding that there is in fact a total approach.
    No one has tried everything, no one there are so many different approaches to pain management, both eastern and western views. When someone can honestly tell me that they have exhausted every possible avenue, then, my next statement to them, would be try again.

    Without that, well, one could always live their lives in never never land, not feeling or understanding. But thats not what the majority wishes to do.

    We all fight for ourselves, fight for the right to enjoy the next day and the day after that.
  • I have no idea how you can type these long messages. I agree with these good people who are trying to help you with a problem (seems like lots of problems). However I guess I will go one step further and suggest it may be time for you to spend a couple of weeks in a hospital (in patient) setting to find out where you are both body and mind. Your primary complaint is 'fear' of a visit with your doctor. That , to me , is a red flag. Do not be afraid. Fear is a mind thing. The doctor is not going to hurt you, okay? All of us on this site live with pain of all types. When a person gets where you seem to be it is time to consider in patient care. Truly, I wish only the best for you. The current approach clearly is not adequate.
  • I too am afraid of pain. I'm afraid it will never go away, I am afraid that doctors won't be able to help me. Well I was afraid. I understand your fear of the position you find yourself in have been there, but it took my fears coming true to learn that they were just fears and I in fact made it past all that fear. However when old pain crops up again I find myself afraid of what lays ahead. I know how it feels to have the guilt of letting your family down and missing out on parts of their lives.

    Have some faith in yourself. It sounds like you know what you want to do, tell that fear to take a hike and take that leap towards what you want your future to hold. You can conquer your fears and you can find a happy medium with your pain. The unknown isn't the end.

    I am saying this cause I totally understand how you feel, maybe not your pain, but what you are going through. I could go on and on. But when we feel old emotionally some of the others doesn't get us down as bad. So take care of yourself in both manners!
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    When I first started at a pain clinic in July I had little idea of opiates because I wanted NOTHING to do with them! My back had been severely injured when I was 8 years old- 40 years ago and I was thinking about MY future when I would NEED the opiates to help with pain. I have been using cognitive behavioral therapy for about 20 years to help with pain, walking, talking, yoga- anything BUT opiates.

    I working in a pharmacy and I know what opiates can and cannot do. But at the pain clinic in July we decided that it was time to bring in the opiates. And NO ONE starts at a high dose! Those guys in hospitals with 3rd degree burns on ventilators? They can start at a high dose because they are on ventilators! While opiates at low dosages do not control all your pain your body (think entire body- autonomic nervous system) cannot tolerate all the opiates it would take.

    Doctors start these medications low so you body can habituate to them. While you still need more for pain your respiratory system cannot work with more opiates because opiates cause respiratory depression. These people dying over overdoses? They took so many opiates that they simply could not breathe. Their lungs could not inflate and bring in fresh oxygen.

    To develop a tolerance so your body can habituate to the opiates you begin on a very low dose and your body signs are carefully watched. The amount of meds does not go up until your oxygen level is high enough to show that you are not in any form of respiratory depression. But you are mixing meds and I don't know yet how you haven't overdosed. Each opiate had a different level of respiratory depression. You are dancing with the devil my friend. Pain is not the ultimate enemy my friend because sometimes you cannot feel anymore pain because you are dead.

    But it sounds like you are looking for the perfect pill. No pain- all gain. There is no such thing. There is an uppermost level of medications after which you can go no higher. We all hope that we can hedge that and not reach it until after we are all 120 years old. But if we need the most allowed at this time to relieve the pain, nothing else is coming along.

    If your doctor IS prescribing above the limit then he is not on your side. You need to find someone to talk to and discuss the "pain fear". It is worse than pain itself because it drives us to do stupid things. And yet, the greatest pain relief is within us...... the central organ of pain is in our own brains. Learn how to manage your feelings toward pain and you win half the battle.
    Sheila

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • RangerRRanger on da rangePosts: 1,014
    you gotta get after it.
    I know what you're saying and feeling boardn, but you've got to pull yourself together and be strong for your family.
    There are answers out there to alleviate your pain and discomfort but you have to become your own advocate. Also think what it's doing to your family members seeing you in this condition. Sheila is right, we need to pull that strength within, call it mind over matter if you will. Hate me if you will by me saying to suck it up but I know what you are feeling, I've been there too, but you can overcome, I did.
    You just gotta want it bad enough.
    Ranger
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