Quote:
Originally Posted by RNcrps2
Now i am generalized CRPS in all 4 limbs and left side of face and am SIP. 2nd opinion Dr. gave treatment as ketamine coma in Mexico for $50, up front (Germany not doing them anymore) Thats not going to happen, then said i could try 3 day high dose ketamine. I was taking methadone to cover the pain. I tried all narcotics and methadone was the only one working. Dr. didnt agree with narcotics b/c he said if come off them i would go thru withdrawl and flare CRPS or skin becoming more sensative. I had recently read an article about how Methadone is a good choice for tx! My original Dr. said dont worry you are not going to be able to come off them b/c you have a chronic condition. I have read: tx is topicals, lyrica/neurontin, antidepressant-cymbalta, MAO inhib. and opoids! Is this just a ploy for me to come off narcotic and have a coma? Is anyone else on narcotics and how do you feel about it? I do fear my body becoming addicted and getting older being on narcotics but i dont get it. I still feel i missed my opportiunity to get the SCS, but i guess i have to move on. I dont know who to believe anymore. I came out of that Drs office thinking-you know what no one knows. I feel I listened to Drs and now i am general CRPS. I feel like now its my decision to choose my path and i dont know which to take. momof4
|
Hi Momof4, I totally agree with Sandy on the SCS. I also have generalized RSD full body SIP. My Dr. is a neurologist, psychiatrist, and pharmacologist. He is very conservative and I have been seeing him 6th year. He is against Methadone. I have been taking vicodin for years. About 6 months ago I was able to go down from 6 a day to 4 . My Dr. believes in muli meds to minimize the opiads. I also take Lorazepam also reduced from 6 to 4. I take 2 blood pressure meds. Cymbalta 120 mg. and a sleeping pill. I used to take 3200 mg neurotin but was able to slowly go off and the electric jerk and jolts did not come thru. I hated that med-weight gain. I have a window of time to drive. I am totally mobile with the exception of one hand 50% range of motion. It was 4 years before I was diagnosed and had delay of treatment of the hand.
I did go thru 150 physical therapy treatments for both frozen shoulders, but got full range of motion back- that was before diagnosis of RSD. I had a year remission after each shoulder
My third round with RSD came while water skiing. I pulled a nerve in one hand getting up out of the water. Misdianosed as RA- Changed Drs. and diagnosed with RSD in one min. confirmed with nuclear med. equipment.
My Dr. just built two clinics with HBOT and I'm going to try the HBOT. I also have trigeminal nerve disorder-feels like an ice pick in temple. loss of feeling down left side of face. I also have internal pelvic RSD If the HBOT doesn't work, I'll consider Ketamine.
How are you doing? I was devasted when a new neuro said I had generalized. He suggested seeing a psychiatrist. I didn't like his two suggestions, in fact I didn't like him. So I found one on my own. The first visit I knew he could help me. He is a gem. I had already had over 2 years of counseling with a psychologist when my parents died. and that helped. but as we both know, this is a different animal.
Are you mobile? have you had pt. I found massage therapy very good. I started right away. and had it each time just before the pt. This is all before I was diagnosed with RSD. Now, I find swimming pool 86 degrees, very helpful in keep mobile and even reversing my toes that were curling. They went back to touching the floor in 4 months in the pool.
Really hope the best for you. please let us know how you are doing? Your friend, loretta with soft hugs
