Dear Steve/Nick, The sore is very likely the prime source of your problem. If you felt it like a normal person you would be in agony. Since you aren't normal, you are fluctuating in degrees of AD. All the pain creates a constant overload that your autonomic nervous system is forced to react to. This reaction comes in the form of hormone discharges that create a feeling of paranoid anticipation. The unexpected sounds simply trigger the feeling of fright/flight emotion. The agonized need to be rolled is probably your body telling you that sore is eating on a nerve. You should be taking some strong pain meds. These dampen your central nervous system's ability to transmit pain signals. Lyrica impairs your Central nervous system's ability to communicate with the autonomic nervous system. You can not battle AD with positive thinking. The unreasonable feeling of dread is your adrenal glands and probably several other glands dumping hormones into your bloodstream. As it gets worse your blood pressure will elevate and your heart will beat wildly. You should have something to bring your blood pressure down while you work on eliminating the cause. Many quads retain a large amount of stool in the large intestine. This should be cleaned out. Your bladder should be checked to see if you are retaining urine and relieve it. If the systemic source is pain from spinal deformity and a pressure wound then it is only appropriate to try to control this pain. I have used Royal Jelly to debried wounds quickly and then used the slime from inside an Aloe plant leaf to begin healing and soothe the pain. Your need to roll is probably a bone spur or a nerve being pinched. X-rays or an MRI may be needed to determine the best way to deal with your skeletal atrophy. After only a few years as a quad most of us have very weak bones and this can be painful by itself. We also develop cysts on the spinal cord called Syringomyelia. These cysts are referred to as syrinx. These may expand or elongate causing severe pain. The longer you are a quad the more these problems present themselves. A long time friend of mine used a standing rig for 15 years when he began experiencing what he called indescribable pain. He had advanced osteoporosis and the cartilage and nerves in his joints were suffering badly from his attempt to slow the process. It is important to remember we all suffer through this differently. It is important to have a doctor that not only reads but is willing to think out of the box. Like many professionals, doctors, nurses and even aids tend to think we are like the last quad they worked with. When you get a nurse or aid that believes that your anxieties are part of your personality, find another nurse/aid.
Best Wishes, john PS, Never trust anyone that insists they are professionals. A real professional doesn't need to tell it, it shows. ________________________________ From: Steve Crowder <[email protected]> To: [email protected] Sent: Sun, October 11, 2009 4:26:23 AM Subject: [QUAD-L] This Is Pretty Long -- Sorry CRY FOR HELP FOR MY STARTLE RESPONSE I have a huge problem I need to throw out to you guys. Over the past six years, I have developed a severe case of scoliosis, curvature of my spine. The curve of my spine, which used to have me shaped like a banana. Now I am even more bent. It gets worse every time I sit in my wheelchair. If my body were allowed to assume its natural shape, then it would be excruciatingly painful. So just about everything I do, from lying in bed to sitting in my wheelchair, requires compensatory measures. In bed, I have to roll over on one side of my body, and then back onto my back and somebody takes really guides my legs and a. When I sit in my wheelchair, as I am right about to sit down, I have to have someone guide my hips into my seat, otherwise I sit down in a painful position. So dealing with that is an issue in itself. Here's my problem. I've developed a startle response. I startle at anything -- anything. The worst is when I'm out in public. Everything gets me. The overhead loudspeaker at stores paging people announcing things, every loud voice, which is almost every voice, children laughing, babies crying, car horns and alarms honking, you name it -- I get to the point where I live in a pain, but worse -- my head is turned almost sideways, which kills my neck (I have a C/3-C/6 fusion) and my only way out is to get out of my wheelchair Something is always getting me when I'm in bed, also. Every time it happens, it puts me into the most horrible pain. The very worst case is when I jump. By jump, I mean my body actually moves and my legs go up in the air. Like I said, I'm very incomplete and am capable of standing and even taking some steps with assistance. But, without going too deeply into the subject, bit and I move enough to be placed in agonizing pain. So I need somebody to help me work on my startle problem. I have people rolling me like crazy. A "roll" is when somebody rolls me onto my side and then back on my back. a number of steps involved, and if I startle during one of the steps, we have to start all over again, which happens extremely frequently. I'm wearing everyone out. It happens throughout the night, and when I don't get rolled, the pain is through the roof. I need to find solutions to the following questions: What do I do to stop? Who should I go to? I have a stage IV pressure sore that will require surgery very soon, and I'll go nuts in the hospital.
