Re: [QUAD-L] syrinx pain or neuro pain

[Corie Jones]

I completely understand how you feel Rob (and others on the list who are suffering with pain), I have been suffering with neuropathic pain (also called central pain) for over 12 years. Mine started several months after my injury and has only increased over the years.  I also have a syrinx and had the shunt procedure done five years ago in hopes of relieving my pain, but it did nothing for my pain and my pain has continued to get worse.  Either that or I'm just not coping with it as well.  My pain level is always between a 7-10.  I have the hot and cold burning, with the pins and needles from my chest down to my feet 24/7.  I've tried all of the pain meds for nerve pain and have had minimal to zero relief.  It is definitely hard to continuously fight it mentally.  It totally affects my quality of life.  As many on the list have said, paralysis is heaven compared to this horrible pain.  The only thing that has helped me stay sane was to go back to school right after my injury and get my Bachelor's and then Masters degrees and then go on to work.  I only can manage to work about 15 hours a week.  I'm a Marriage and Family Therapist Intern working on the required hours to get licensed and I absolutely love my work, so that helps to keep my mind distracted from my pain those few hours a week.  But it is definitely a very hard struggle.  The only time I get relief is when I sleep and I don't sleep very well because of the pain, but when I first wake up it's the hardest because realizing I'm in for another day of burning hell (literally) is quite depressing!  Like you mentioned, I would love to have an hour free from pain to get a break and feel normal again.  I'm glad to hear the Neurontin is helping some for you. Hang in there everyone! Corie C4-5, incomplete, 12 1/2 yrs. post ----- Original Message ----- From: Robert Brennan To: quad-list@eskimo.com Sent: Tuesday, April 25, 2006 9:09 AM Subject: Re: [QUAD-L] syrinx pain or neuro pain I acquired quadraplegia in December of 97 (ho ho ho). Pain kicked in late 99. I began taking Neurontin August of 2005. Pain levels have decreased from 8 , 9, even sometimes an unbearable 10. Now it's 4 and 5,even that's pretty intense but i would just love 1 hour pain free just to remembr what it's like. The moment i wake it instantly triggers and this affects my willpower as i am so preoccupied trying to fight it mentally therefore becoming more tense causing it to linger.     Thanks.                                                Rob. Send instant messages to your online friends http://au.messenger.yahoo.com