Like Steve and Joan have said, I also have the similar type pain Dan mentioned he's dealing with. Mine is also with the severe ice burning pain in my abdomen and back and the hot burning pain in my butt and legs with the needles and feeling like they are asleep. I have been dealing with it for about 15 1/2 years. My pain started about 3 months after my injury and has only increased. I also have a syrinx and have had the shunt surgery to see if it would decrease the pain, but it did nothing. Like Steve mentioned, I have tried pretty much everything out there to reduce the pain and even got a baclofen pump to add anesthesia type medication to relieve the nerve pain, but nothing has helped. I also tried about 5-6 months ago a new pain medication in my pump, called prialt, which is an ocean poisonous snail venom turned into chronic pain medication. I couldn't get past the severe side effects for me of constipation. It wasn't a typical side effect, but nonetheless, I could not deal with the constipation and added pain to get to the "therapeutic dosage" to continue. So like Steve and Joan mentioned, I have just used staying busy with distraction to cope with my pain. I've spent nearly 16 years going to school, getting my BA and Masters degree, then working as a Marriage & Family Therapist Intern and recently becoming licensed, and also adopting two children over the past two years... so focusing on my goals and dreams has really helped me cope with my pain the best. It also has helped having a supportive family, having my dream of having children come true, and getting into a career I love. I do take an antidepressant medication (doxepin) and Klonopin at night to help me sleep and cope with the pain, but nothing gets rid of the pain. I hope they continue on the path of trying to find a cure for neuropathic pain as well as for spinal cord injuries.
Corie, C 4-5, incomplete ----- Original Message ----- From: Steve Oldaker To: ddh...@sbcglobal.net ; 'quad-list' Sent: Thursday, April 16, 2009 9:29 AM Subject: RE: [QUAD-L] strange pains Danny, I have experienced nearly the exact same pains you described in the same locations 24/7/365 for 20 years. The affected areas also feel like they are immersed in buckets of ice water. I've tried pain meds, anti-seizure meds, anti-depressants, biofeedback, acupuncture and hypnosis. Sadly, nothing has worked. I hope you find a solution. Steve - C4, 20 years From: Danny Hearn [mailto:ddh...@sbcglobal.net] Sent: Thursday, April 16, 2009 12:11 PM To: quad-list@eskimo.com Subject: [QUAD-L] strange pains HELLO GANG, I HAVE BEEN GETTING INCREASING PAINS-----IT HAPPENS A LOT WHEN I SLEEP OR WHEN I'M UP IN MY CHAIR-----ESPECIALLY IF I'M SLEEPY OR TRY TO DOZE OFF IN MY CHAIR----------- TO DESCRIBE IT IS LIKE THIS..........MY HANDS FEET LEGS , BACK BECOME VERY PAINFULL AND TINGELY----( SUCH AS WHEN A PERSONS HANDS OR FEET USED TO FALL ASLEEP, WHEN LAYING ON THRM WRONG, BEFORE INJURY OR PARALASIS. ) IT IS HAPPENING TO ME MORE OFTEN THESE DAYS......IT IS VERY PAINFULL AND CAUSES ME TO SPASM MORE THAN USUAL. IT SEEMS MY ONLY RELIEF IS BY TAKING PAIN MEDS SUCH AS VICODEN. I KNOW THAT I HAVE A SYRINX...SUCH AS MANY OF YOU ALSO,, AND HAVE HAD BLADDER UTI PROBLEM MUCH OF THIS YEAR, BUT DOC'S QUIT TREATING IT DUE TO FEAR OF MUTATION OR WORSE NON TREATABLE UTI FORMING. HAVE ANY OF YOU EVER EXPERIENCED THIS KIND OF PAINS??? THANKS, DAN H. 11.6 YEARS POST ST. LOUIS, MO. AREA.
