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Thread: Explaining A/D caused by pain -> Metamorphosis from a ramble to Specificity

  1. #1
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    Explaining A/D caused by pain -> Metamorphosis from a ramble to Specificity

    Used to put the heel of my sock in my mouth to pull it around the heel when it was tacky after a shower. Put my left sock on and when trying to grab my right leg, it kept going in the wrong direction.

    With one sock on and a towel on my lap, drove to the hospital where yes my right femur was broken. When screwing in a piece of metal to hold it in place, doctor told me my bones were like soap. This was ~5 years post injury, and have broken 8 bones below my knees within two years, the x-rays come out gray are dingy at best.

    Each time after a fracture the heterotopic ossification in my right hip would grow and now is like a cinderblock will a large plot of cement sticking out from the inside. It has even bruised a few times, so can only lay on my left side or back.

    Six months after discharge from rehab was again living in the dorms going to school. Would park the shower chair at the foot of the bed and my wheelchair at the side, then slide down to the shower chair, shower, back in the bed, get dressed and into the chair at the side of the bed.

    Continue to do this for 30 more years until my back gave out, (no one told me wasn't supposed to do th) is the pain went wild and the autonomic dysreflexia started. My C6 - C7 cervical vertebrae were surgically fused after breaking my neck and my lumbar are fused by just sitting there for a long time.

    The pain is my C6 vertebrae, right in the middle of the two fused sections of my spinal column, which took all the stress of sliding down the bed for 30 years. My vertebrae are disintegrating and my muscles are atrophied and my spinal column has no support. I'm a bobble dog.

    Since my injury, my blood pressure has always been low. In rehab, they took it at 42/36 sitting up, just before seeing the purple dots prior to fainting. The lowest since has been lying down at 40/28 and have been taking midronine for 20 years.

    Now that they stopped the narcotics the pain of just moving my body from my back to my side puts my blood pressure at 200/100 and stays there. If I get up in the chair blood pressure goes to 260/140.

    For the first 30 years, AD was caused by the usual culprits bowel, bladder, bones mostly from UTIs but would also get it every time after breaking a leg a bone or bad constipation.

    Have been blessed with good skin, but was introduced to A/D, when the cannons were going off inside my head,blood pressure was 300/160 and was sweating like a sprinkler out of my forehead washing off the electrodes.


    Unfortunately I'm unable to fall asleep on my back really messes things up. Have to write a letter about quadriplegics and autonomic dysreflexia, which is stressing me out because of my blood pressure hit 250 yesterday.

    Gently rubbing a washcloth along my spinal column is incredibly painful and caused A/D raising my blood pressure to 250/123 and had to get on my back and smoke a lot of marijuana to get it to come back down.

    Unfortunately, most medical professions know nothing about this since it is specific to quadriplegics and when contacted always tell me to go to the ER because they don't know what to do, there is nothing they can do .

    Do not like discussing my injury, implications and ramifications with anyone, so posted on the board in its evolution to becoming a letter. However, am a world-class whiner & complainer.

    Went to a rehab hospital where they put me on the narcotics to control the pain and blood pressure. Pain management kept changing them every month, which is not good for a quadriplegic, nor did it work.

    Will write things many times; it's my way of working through things. Some people need to talk it out, I just keep rewriting it, removing extraneous words and then usually and am left with just the facts, or a conclusion.

    Need to turn this random ramble into a letter stating that my autonomic dysreflexia is caused by the pain of my vertebrae and other bones moving against one another. My left leg is longer, curved like a banana and sure do not sit straight anymore, but I'm stuck in bed because they will not give me the pain pills to help with the pain, to help with the blood pressure to help me stay alive.

    Any revisions, comments or suggestion would be appreciated. You can rewrite a sentence, paragraph world all whole say.

    The end result is to who?

    Know the it cannot be specific to be what are other people doing?

  2. #2
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    Do you have nifedipine for emergency AD episodes? I am fortunate to have a primary car physician who respects that chronic pain sufferers may need ongoing scripts of opioids. I use very little, but am grateful that I do not have to fight for it. I cannot offer anything more, but as Bill Clinton famously said, "I feel your pain."

  3. #3
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    My dad had a stroke somewhere between 60 and 65 and it wiped out his mental capacity. Do not want to stroke out myself and become a drooler, ending up in a nursing home.

    Tired of laying in bed with my head pounding, with stabbing pains in my eyeball and whether actually have PTSD or not, live in incredibly stressful life. Some of which is self-inflicted but much is compounded by society. Most of the stress come from people not being able to handle a 60-year-old C6 quad living by themselves for 40 years, and having to fight to convince them that is what is actually happening. They want to put me in an institution so bad is hard for me to comprehend.

    If that were to happen will most likely die in less than a year.

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