When did the pain start?

David Berg · 09-14-2001, 04:09 PM

I'm leaving town for the weekend, and before I take off I'd like to ask a question. Hopefully I'll be able to find a few responses by the time I come back (or when I find a place to access the 'net at a library, etc.)

After your spinal injury, how long was it until your pain began. I don't mean the acute pain of the injury, of course, but the chronic pain that you're still suffering. Did the nature of the pain ever change, like from "normal" pain to "indescribable" neuropathic pain? Over time, has the pain faded or gotten worse?

Everyone try to make the best of the weekend. We're on our way to a celebration of new life; my sister-in-law's baby shower. She's expecting her first child next month. It seems like a good time to celebrate the joy of new life.

David Berg

ll64260 · 09-15-2001, 07:01 PM

After 6 months post injury, I started having burning sensation just around my toes. From that point on, the pain gradually extented to all areas below the injury over a 4 month period.

David Berg · 09-17-2001, 07:39 PM

VH,

What is the level and extent of your injury?

David Berg

alan · 09-17-2001, 08:26 PM

The pains started about a month after the injury, and kept intensifying (still are, somewhat.) Rehab doctors ignored them, ,andd said I couldn't have pain below the level of injury. Rehab and I never got along after that.

Joe B · 09-18-2001, 04:25 AM

My pain started as a constant tingle/itch about two months after the injury and increased quickly to a burning sensation within weeks. The pain was generally spread out evenly below midchest. I'm a C6-7 trauma injury. They started me on baclofen for spasticity before the pain started.

I have often wondered if there is a possible connection between starting the baclofen and the pain.

I find that light pressure, movement or wind increases the pain levels for me so I have developed means to minimize these. Is this the norm for neuropathic pain in others

Joe B

ll64260 · 09-18-2001, 02:28 PM

I am T10 complete (from car accident) and 1 year and 9 months post injury.

When the pain is really bad, touching or movement
below the injury area would cause more pain. Not keeping the legs warm would also increase the level of pain?

TD · 09-18-2001, 03:38 PM

I am a T4 incomplete. My pain (the burning-tingles) started within 3 months of injury in the lower extremities. Pain has intensified even with Baclofen (intrathecal Pump). Pain levels vary between 4 on good days to 9 or 10 on bad days and have not changed in 6 years.

"And so it begins."

mnvikes · 09-18-2001, 04:13 PM

My pain started 17 years post injury. I'm a c 4-5 incomplete. I started getting increasinly spastic about three years ago. From then on i started having pain in my perineal area ranging from right under my scrotum and sometimes into my lower back. I went from 428mc bacolfen to now 1000mc with little help. Tried all of the anti-depressants,acupunture, sacaral ryzotomy ect. If anyone has had simular pain please email i need help!

David Berg · 09-18-2001, 08:10 PM

Joe B

I won't say it's absolutely impossible, but I really wouldn't expect that your pain resulted from Baclofen. I can say that I have never seen this listed as an adverse effect of Baclofen.

It seems much more likely that your pain resulted from your injury, especially considering the timing and the fact that your pain is restricted to the areas below your injury. Any drug your took for pain would have a systemic effect and might as well have caused pain above your injury, too. If you read the other responses here you'll see that it often takes a matter of weeks or months for the neuropathic pain to start, just as yours did. I'm not sure about spinal cord injury, but in the cases where pain resulted from nerve damage during a surgery, such as ablative surgery (cordotomies, thalamotomies, etc.) the pain might not kick in for a couple of years.

How do you deal with keeping your legs warm when light touch aggravates the pain? I know people who have to wear baggy shorts to avoid the touch on their legs. I suppose that in bed you could use one of the frames they make to hold the covers off your body.

I wish you the best of luck dealing with your trials.

David Berg

Joe B · 09-20-2001, 06:49 AM

David,

The medicines I take have keep the pain down to tolerable levels. Before the medicine I wondered how long I could take the constant pain.

Keeping warm below my injury level is a problem in the cooler months. The solution I use is to wear long thermal underwear that fit snugly and doesnt shift when I move. I can tolerate the constant pressure much better than a light pressure that moves around.

I have often wanted to get one of those bed frames they use for burn patients. The ones that form a tent. I cant tolerate most blankets especially if they have a textured surface. My wife bought a down filled comforter and it has been the easiest for me to tolerate. I often sleep on my stomach because this gives a deep constant pressure on the surfaces most affected, my stomach and thighs. The back of my legs etc seem to have fewer nerve endings.

I try to sit still as movement aggravates things but as many people have noted, if you can occupy your mind with other things, you comparmentalize the pain and it isn't in the forefront and isn't the only thing you think about. That leads to a downward spiral that gets worse and worse.

I believe Dr. Young talked once about their being more fine fiber nerves noted in mice that receeived baclofen. I will do some searches in PubMed and see if there is more information

Joe B

09-14-2001, 04:09 PM	#1
David Berg Moderator Join Date: Sep 2001 Location: St. Louis, MO Posts: 4,527	When did the pain start? I'm leaving town for the weekend, and before I take off I'd like to ask a question. Hopefully I'll be able to find a few responses by the time I come back (or when I find a place to access the 'net at a library, etc.) After your spinal injury, how long was it until your pain began. I don't mean the acute pain of the injury, of course, but the chronic pain that you're still suffering. Did the nature of the pain ever change, like from "normal" pain to "indescribable" neuropathic pain? Over time, has the pain faded or gotten worse? Everyone try to make the best of the weekend. We're on our way to a celebration of new life; my sister-in-law's baby shower. She's expecting her first child next month. It seems like a good time to celebrate the joy of new life. David Berg

09-18-2001, 04:25 AM	#5
Joe B Senior Member Join Date: Jul 2001 Location: 21704 Slidell, Boyds MD 20841 Posts: 163	Two Months My pain started as a constant tingle/itch about two months after the injury and increased quickly to a burning sensation within weeks. The pain was generally spread out evenly below midchest. I'm a C6-7 trauma injury. They started me on baclofen for spasticity before the pain started. I have often wondered if there is a possible connection between starting the baclofen and the pain. I find that light pressure, movement or wind increases the pain levels for me so I have developed means to minimize these. Is this the norm for neuropathic pain in others Joe B

09-20-2001, 06:49 AM	#10
Joe B Senior Member Join Date: Jul 2001 Location: 21704 Slidell, Boyds MD 20841 Posts: 163	Keeping warm and other skin touch conditions David, The medicines I take have keep the pain down to tolerable levels. Before the medicine I wondered how long I could take the constant pain. Keeping warm below my injury level is a problem in the cooler months. The solution I use is to wear long thermal underwear that fit snugly and doesnt shift when I move. I can tolerate the constant pressure much better than a light pressure that moves around. I have often wanted to get one of those bed frames they use for burn patients. The ones that form a tent. I cant tolerate most blankets especially if they have a textured surface. My wife bought a down filled comforter and it has been the easiest for me to tolerate. I often sleep on my stomach because this gives a deep constant pressure on the surfaces most affected, my stomach and thighs. The back of my legs etc seem to have fewer nerve endings. I try to sit still as movement aggravates things but as many people have noted, if you can occupy your mind with other things, you comparmentalize the pain and it isn't in the forefront and isn't the only thing you think about. That leads to a downward spiral that gets worse and worse. I believe Dr. Young talked once about their being more fine fiber nerves noted in mice that receeived baclofen. I will do some searches in PubMed and see if there is more information Joe B

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09-15-2001, 07:01 PM	#2
ll64260 Junior Member Join Date: Jul 2001 Location: San Jose, CA USA Posts: 10	After 6 months post injury, I started having burning sensation just around my toes. From that point on, the pain gradually extented to all areas below the injury over a 4 month period.

09-17-2001, 07:39 PM	#3
David Berg Moderator Join Date: Sep 2001 Location: St. Louis, MO Posts: 4,527	VH, What is the level and extent of your injury? David Berg

09-17-2001, 08:26 PM	#4
alan Senior Member Join Date: Jul 2001 Location: Baltimore, MD Posts: 5,223	The pains started about a month after the injury, and kept intensifying (still are, somewhat.) Rehab doctors ignored them, ,andd said I couldn't have pain below the level of injury. Rehab and I never got along after that.

09-18-2001, 02:28 PM	#6
ll64260 Junior Member Join Date: Jul 2001 Location: San Jose, CA USA Posts: 10	I am T10 complete (from car accident) and 1 year and 9 months post injury. When the pain is really bad, touching or movement below the injury area would cause more pain. Not keeping the legs warm would also increase the level of pain?

09-18-2001, 03:38 PM	#7
TD Senior Member Join Date: Aug 2001 Location: Phoenix, AZ, USA Posts: 649	I am a T4 incomplete. My pain (the burning-tingles) started within 3 months of injury in the lower extremities. Pain has intensified even with Baclofen (intrathecal Pump). Pain levels vary between 4 on good days to 9 or 10 on bad days and have not changed in 6 years. "And so it begins."

09-18-2001, 04:13 PM	#8
mnvikes Junior Member Join Date: Jul 2001 Location: Minneapolis, Minnesota Posts: 25	My pain started 17 years post injury. I'm a c 4-5 incomplete. I started getting increasinly spastic about three years ago. From then on i started having pain in my perineal area ranging from right under my scrotum and sometimes into my lower back. I went from 428mc bacolfen to now 1000mc with little help. Tried all of the anti-depressants,acupunture, sacaral ryzotomy ect. If anyone has had simular pain please email i need help!

09-18-2001, 08:10 PM	#9
David Berg Moderator Join Date: Sep 2001 Location: St. Louis, MO Posts: 4,527	Joe B I won't say it's absolutely impossible, but I really wouldn't expect that your pain resulted from Baclofen. I can say that I have never seen this listed as an adverse effect of Baclofen. It seems much more likely that your pain resulted from your injury, especially considering the timing and the fact that your pain is restricted to the areas below your injury. Any drug your took for pain would have a systemic effect and might as well have caused pain above your injury, too. If you read the other responses here you'll see that it often takes a matter of weeks or months for the neuropathic pain to start, just as yours did. I'm not sure about spinal cord injury, but in the cases where pain resulted from nerve damage during a surgery, such as ablative surgery (cordotomies, thalamotomies, etc.) the pain might not kick in for a couple of years. How do you deal with keeping your legs warm when light touch aggravates the pain? I know people who have to wear baggy shorts to avoid the touch on their legs. I suppose that in bed you could use one of the frames they make to hold the covers off your body. I wish you the best of luck dealing with your trials. David Berg