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  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I was on the phone with one of my best friends as I read this. She is a psychiatrist and is learning about all the pain syndromes as I am.
    She's known me only for a few years and hasn't known ALL of the pain issues I've been through- I had never thought of using my experiences to teach others.
    My diagnosis for now is centralized Pain. We've been doing the "Hit the pain with all you've got" to see what will be effective. MS-Contin was a miracle when I first tried that! It was back in November and it had been decades since I had a relatively pain free holiday season. I use oxycodone for break through pain but I use it sparingly. I've had injections with nerve blocks, pain blocks, epidural..... none have seemed overly helpful. I have a TENS unit that helps me a whole lot when I am drawing or painting, times when I need a steady hand and I know I'll be still for hours.

    This morning I fell out of bed...... NOT my fault (entirely). My dog had been sick but brought me his food bowl and was whining. I just tried to roll close to the edge of the bed to see and, memory foam, I slipped onto the floor. Initially everything HURT but once I got back into bed with ice I fell back to sleep. Now I'm looking for injuries and the only thing is my thumb may be broken. My knee, my hip, my back- all are sore but tolerable and without bruising. I had thought I would feel nothing while on MS-Contin but I can definitely feel my thumb! Acute pain is different and I don't know the word but I want to say, more emotional, like I need to move now! (I know, rest, ice, compression, elevation!)

    One of my knees has had 3 surgeries with one splitting the tibia the long way to change the patella angle. Feeling the split tibia has never gone away- it is wedged open with cadaver bone and the split has still not filled in- 11 years since that surgery. That leg does look remarkably different than my other. And one of the nerve did have to be severed.

    I'm absolutely amazed with how much I'm learning about neuropathy and pain. The videos and doctors I've been watching are very informative. I've always worked with brain issues but this is all new. What an incredible and devious organ the brain is!

    Specifically I am looking at oxytocin. It is the hormone which can best diffuse pain. The obvious plays and ways for oxytocin to be released is during labor and delivery of a baby and while nursing. But the hormone is also present while with those we love or enjoy being in the company of. Pets also cause us to release oxytocin and I have a service dog. I know what he does for me but I'd like more people to learn about this non-medicinal option.

    Thanks so much for commenting
    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)
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    I am sorry I to have centralized pain, so much different than normal pain there really isn't ups and downs in levels like normal pain. It's caused by a faulty interpretation of pain and dysfunction of your CNS. Some call it wind up theory. It's a vicious cycle . Central pain syndromes are believed to be present in many of the most painful disorders and many drs beleive this explains failed back syndrome when others have same surgury .. Yes the brain and body have huge capacity for healing but also can essentially destroy itself. There is no intelligent design in a brain that cannot distinguish old pain from new pain. My doctor told me to forget everything I knew about pain because CNS pain is nothing the same, entire different animal with little in way of treatment
    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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  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    Even when it huts a LOT it's helpful to come by the forums and have someone else know exactly how I feel. I have been getting more and more angry with people who say, "Pretend it's not there."

    I have places with tissue damage and other places which should have been fully healed along with the nerve pathways. And then, I also try to make myself believe that I need to keep trying harder. I end up in more pain, with some tissue damage and a bunch of people who still insist that I haven't tried hard enough.

    I need to practice saying, "No. I'm sorry but I hurt too much now." and walk away. I now, formally renounce guilt! I will no longer dwell in guilt because I hurt too much to do something for someone else!

    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)
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    You cannot pretend central pain is not there and work through it. It's not an arm or a leg it's the CNS people who say that are idiots. Same with people who say central pain will have good days and bad, that's not exactly true with central pain there are bad days and worse days. Like I said my dr who is a CNS specialist said forget all you've know about pain in the past because I could not understand why I couldn't work through it or push through it as I had before. It also affects congnative function, your body will also be releasing to much cortisol most likely and that alone is tissue damaging in long term vs short term where it's healthy
    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.
  • I have had facet joint pain with the nerves constantly on fire radiating in my back for 7 years. It was difficult to diagnose with many Specialists I've seen but usually was with degenerative discs and history of an annular tear I had in my Lumbar spine.

    I get RFA(radio frequency ablation) which helps a lot but still require meds and the pain really never goes away but can be manageable. Never give up hope for getting some relief for your pain. TC. Charry

    PS also what helped me was getting into a good Pain Management Program and Dr at the hospital and not a clinic.
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
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  • I know how frustrating it is to have pain and no one knows from what. It took 5 years for a urologist to find my disease and the whole time I felt like I was going crazy. I just completed the trial for a pain pump...I know doctors can intimidate and when they can't find the problem they get frustrated and it comes off as they r frustrated with us. I had to take my health in my own hands and went to mayo clinic in search of answers. In short, don't give up and tell the medical community how it is. God bless.
    Shereece
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Sugar magnolia, same here that same teaching hospital finally brought the answers to all my pain. Wasn't good news but no one can deny it now. Pain and its mechanisms can be so much more complicated than many dr can handle. Studies are being done at some of the larger teaching hospitals , one in Boston that is blowing the lid off pain and how drs view it now and what can be blamed for it. It's pretty revolutionary especially for fibro patients and differences in acute, chronic, central, complex pain and treatment for it.
    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
    Plum tuckered out, that's a hard one to recognize your limitations and not feel guilty cause sometimes your mind forgets those limitations or refuses to accept them and that results in more pain. I need to understand things and when I had my first spine injuries I could understand there was a hernition on spinal cord a bit and later annular tears found, ok understandable structural defects that felt pin free in morning and gradually got unbearable thru day but with gravity , sitting I can grasp that concept and reason for the most part. Enter 2nd spine injury that resulted in CNS issues and I develop this cool little symptom called allodynia whee bed sheets weigh 100 lbs and cause severe pain, where a ceiling fan blowing air on my feet hurts so bad that I get nauseous, where my right foot and hand get so cold and even though they hve loss of sensation in them they feel like the worst toothache touched by ice then with icy hot rubbed all over it. I for the life of me cannot grasp this type of pain from damaged nerve fibers it's beyond logical to me that it's occurring, won't get better and no meds or treatment seems to work so far. My mind is boggled at the complexity of trying to understand it, but I can't stop trying to beat it.
    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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