View Full Version : This pain is a growing monster!
Lainy
12-26-2004, 05:48 AM
For about a year after my C5 injury I seemed to be making steady progress in all areas. Then just after my 1-year post injury date and after an MRI was done to make sure no syrinx was forming, the pain neuropathic pain seemed to keep getting worse. As fast as my doctor could find the combination of meds that seemed to take the edge off the pain, it'd get worse again and the meds had to be changed. This didn't seem like a simple case of growing tolerant of the drugs either. Couldn't be. Not that quickly. So I started keeping a pain journal. It seemed to me what was happening was, after I'd injure myself, my brain sent out the pain signals at 1000X the level of pain it should have been at, and then wasn't able to call them off. It didn't take long to prove my suspicion. Last Sunday I slipped in my closet but was able to catch myself and prevented a fall. I did twist my arm in the process though. Immediately both hands, both feet and legs started burning intensely. The burning subsided a little bit by morning, the pain is usually a little better in the morning and worsens as the day goes on. Then when reaching for the door handle of the car so my husband could take me to work that morning, I slipped in the freshly fallen snow and went right down on my back. I didn't feel hurt at all, but by afternoon, the pain index was going up, and now 5 days later, I cannot stand to have fabric touch my right leg at all, my hands and feet burn intensely and even my left leg, which up until now has been my 'good' leg, is burning. Does neuropathic pain usually run its course this way? Or am I just lucky? I was blessed in that my C5 injury didn't cause paralysis, but today my feet and legs burn so much that I cannot walk 10 feet without extreme burning pain. I know too that my brain doesn't know how to shut off any kind of pain signals it sends out so if I take one more spill, or have one more injury happen to my body, I will likely need a wheelchair due to pain alone. How many people are there out there with pain like this? A kind of pain that seems to be assimilating all the other pains a body receives and just keeps growing as though it's a huge, invisible leech sucking up small amounts of pain from every injury, only to turn it into burning, stabbing, searing pain 1000x what it took in. The more often get injured, the bigger the leech gets; the bigger this monster leech gets, the worse my balance gets due to the pain and the more prone I am to injuries... Make it stop!
Lainy, I am also a c5 incomplete and although I have some impairment in my hands and legs, I am able to walk and get around pretty well. About three years after my injury I started getting CP which was tolerable with small amounts of medication, but now the pain has gotten so bad as to keep me from doing much walking or even getting out. Like you situation my problem is intense burning and skin sensitivity. When the weather gets cold the condition worsens. I have had numerous MRI's since my accident and my spine shows no changes. The only medicine that seems to help at all with the burning is ametrypteline.
mike
Lainy
01-01-2005, 08:14 PM
My doctor just put me on amatriptyline a couple weeks ago. I don't know if it's doing anything and I'd hate to try going without it to find out, because the pain is bad enough now. I'm still confused about central pain. How is it different than neuropathic pain?
Lainy, I am no expert in this area, but http://www.painonline.org/ (http://www.painonline.org/,) is a excellent website with information about CP.
mike
Moderator note: Just editing to fix the broken link.
[This message was edited by David Berg on 01-09-05 at 01:02 AM.]
metronycguy
01-01-2005, 09:41 PM
lainy ..what meds are you on for the pain beside the amitripaline?
David Berg
01-02-2005, 09:00 AM
Originally posted by Lainy:
I'm still confused about central pain. How is it different than neuropathic pain?
Central pain is one form of neuropathic pain. It happens when neuropathic pain is caused by damage to the sensory nerves in the central nervous system, generally somewhere from the thalamus at the base of the brain and down thru the spinal cord. It can be caused by spinal injury, stroke, MS, or any number of other conditions.
The site painonline.com is also a good source.
Alan
"Was it over when the Germans bombed Pearl Harbor?"
Lainy
01-08-2005, 11:15 AM
For the year after my injury I was taking 3600mg of Neurontin and 50mg of Amitriptyline. Since then my doc has lowered the Neurontin to 1200 but added 75mg of Topamax. Can't say that Topamax does any more for the pain than Neurontin did, which wasn't a whold lot, but after only two days on Topamax, the occasional involuntary jerking in my legs completely stopped and hasn't returned. I'm also on 120mg of Oxycontin for the pain which at least takes the edge off a little. I'm hoping Prialt will be the magic potion we're all waiting for - if we can afford it, once it's available later this month.
Prialt is for use in pumps.
Alan
"Was it over when the Germans bombed Pearl Harbor?"