why do the pains keep getting worse??

alan · 10-11-2001, 09:19 PM

What is the reason that my post-SCI pains didn't stay at the level they were when they first appeared? Nothing has changed in my neck over the last 20 years, so why do the pains intensify with time?

Being as down as I am now, they feel like they're getting worse by the minute. I want to go to sleep and not wake up, but I probably won't even sleep, period. This really sucks.

David Berg · 10-12-2001, 10:05 AM

Alan,

One theory I've heard is that nerve sprouting, which many feels holds promise in motor nerves, can cause a problem in sensory nerves. Some people think that perhaps when the sensory nerves sprout that they are trying to regrow in a sort of "primitive" way that winds up causing worse pain. This is one idea behind why some people don't experience central pain until months after an injury.

This is purely unqualified brainstorming, but have you asked your doctor about a prescription for something that would help you get some sleep? Most folks with any type of chronic pain say that the pain is worse when they are in dire need of rest. I wonder if you took a strategy of doing what it took to get some sleep instead of focusing exclusively on eliminating enough pain so you could fall asleep on your own might be of any benefit. Perhaps it could do some good for the depression that you're facing as well.

Just a random thought from an bystander,

David Berg

alan · 10-12-2001, 12:58 PM

My poor doc has tried me on many meds for sleep. No luck with them. It's not like I slept through the night normally, but at least I'd get a few hours. Now, nothing in a week, and prospects don't look good, as my pain levels are the highest they've ever been.

David, I'm so depressed, and I'm afraid I'm going nuts after all these years of full-body intense pain and little to no sleep. I can't even go see the doctors I need to see because the pains render me unable to go anywhere. I'm living "Dante's Inferno" and I can't take it anymore, yet I also can't end it. You know the burn and tightness of central pain - imagine it everywhere on your body from upper chest/back down, at level 10 in many places. That's hell.

I don't even notice any effects from the piddling amounts of medications I'm on - .5 mg klonopin, 15 mg Remeron, 15 mg Buspar, 15 mg MSContin.

I want a life, damnit. With these pains, I can't and don't have one.

[This message was edited by alan on October 12, 2001 at 08:45 PM.]

David Berg · 10-12-2001, 09:48 PM

Alan,

I sincerely wish that I had more answers. All I can do is advocate as best I can for those who are qualified to work on a medical solution. There is some exciting research going on, but it's not a quick fix. I honestly believe that a solution to all pain is out there somewhere, but it will likely come in bits and pieces. Of course, in your situation any bit or piece would be most welcome.

The main thing that comes to my mind right now is that you should try to find some sort of counselor or member of the ministry that would come to you and help you try to find a means to dealing with your current situation. I know even these words may sound hollow, but I believe strongly that you could only benefit from a good counselor. I have no idea what your family situation is, but hopefully someone could help to arrange something, or perhaps you could make a call yourself to set something up and then try to to speak with them with an open heart.

I have no doubt at all that at various times during your years of pain that you've tried virtually every suggestion that anyone can now offer. Don't give up yet, for there are many who care for you and many who are still willing to do whatever they can to help.

Take care and take heart,

David Berg

10-11-2001, 09:19 PM	#1
alan Senior Member Join Date: Jul 2001 Location: Baltimore, MD Posts: 5,223	why do the pains keep getting worse?? What is the reason that my post-SCI pains didn't stay at the level they were when they first appeared? Nothing has changed in my neck over the last 20 years, so why do the pains intensify with time? Being as down as I am now, they feel like they're getting worse by the minute. I want to go to sleep and not wake up, but I probably won't even sleep, period. This really sucks.

10-12-2001, 12:58 PM	#3
alan Senior Member Join Date: Jul 2001 Location: Baltimore, MD Posts: 5,223	sleep meds My poor doc has tried me on many meds for sleep. No luck with them. It's not like I slept through the night normally, but at least I'd get a few hours. Now, nothing in a week, and prospects don't look good, as my pain levels are the highest they've ever been. David, I'm so depressed, and I'm afraid I'm going nuts after all these years of full-body intense pain and little to no sleep. I can't even go see the doctors I need to see because the pains render me unable to go anywhere. I'm living "Dante's Inferno" and I can't take it anymore, yet I also can't end it. You know the burn and tightness of central pain - imagine it everywhere on your body from upper chest/back down, at level 10 in many places. That's hell. I don't even notice any effects from the piddling amounts of medications I'm on - .5 mg klonopin, 15 mg Remeron, 15 mg Buspar, 15 mg MSContin. I want a life, damnit. With these pains, I can't and don't have one. [This message was edited by alan on October 12, 2001 at 08:45 PM.]

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10-12-2001, 10:05 AM	#2
David Berg Moderator Join Date: Sep 2001 Location: St. Louis, MO Posts: 4,527	Alan, One theory I've heard is that nerve sprouting, which many feels holds promise in motor nerves, can cause a problem in sensory nerves. Some people think that perhaps when the sensory nerves sprout that they are trying to regrow in a sort of "primitive" way that winds up causing worse pain. This is one idea behind why some people don't experience central pain until months after an injury. This is purely unqualified brainstorming, but have you asked your doctor about a prescription for something that would help you get some sleep? Most folks with any type of chronic pain say that the pain is worse when they are in dire need of rest. I wonder if you took a strategy of doing what it took to get some sleep instead of focusing exclusively on eliminating enough pain so you could fall asleep on your own might be of any benefit. Perhaps it could do some good for the depression that you're facing as well. Just a random thought from an bystander, David Berg

10-12-2001, 09:48 PM	#4
David Berg Moderator Join Date: Sep 2001 Location: St. Louis, MO Posts: 4,527	Alan, I sincerely wish that I had more answers. All I can do is advocate as best I can for those who are qualified to work on a medical solution. There is some exciting research going on, but it's not a quick fix. I honestly believe that a solution to all pain is out there somewhere, but it will likely come in bits and pieces. Of course, in your situation any bit or piece would be most welcome. The main thing that comes to my mind right now is that you should try to find some sort of counselor or member of the ministry that would come to you and help you try to find a means to dealing with your current situation. I know even these words may sound hollow, but I believe strongly that you could only benefit from a good counselor. I have no idea what your family situation is, but hopefully someone could help to arrange something, or perhaps you could make a call yourself to set something up and then try to to speak with them with an open heart. I have no doubt at all that at various times during your years of pain that you've tried virtually every suggestion that anyone can now offer. Don't give up yet, for there are many who care for you and many who are still willing to do whatever they can to help. Take care and take heart, David Berg