Coping: RSD, Chronic Pain, Fybromyalgia The importance of Peer Support

  1. profile image52
    lrm196posted 17 years ago

    After one failed neck surgery in 2001 and a triple cervical fusion in 2004, It became quickly apparent that my arms, then legs, then face began to shake.  Soon thereafter, I was inflicted with the most agonizing pain I have ever experience.  From 2001 to 2005 I endured millions of tests including tests for Parkinsons, bone marrow cancer, etc...After 13 hospitalizations on average during this time frame, it got to the point where there were many days I could not get out of bed.  As a lawyer and a professor, it killed me when the doctors told me I was just too sick to work.  In 2005 a famous neurologist finally advised me that I had RSD. While one might think knowledge is equivalent to a cure, that is not the case with RSD.  Since my diagnosis, I have endured on average 12-13 in-patient hospitalizations for a minimum of a week each year.  I have been through out patient ketamine for three years, as well as two ICU-in hospital ketamine infusions.  I am on more pain killers than a person twice my size can take and have gained about 50 pounds from neurological drugs.  i also had the stimulator. It seemed to work great during the 5 day trial. The problem was a month after being installed it kept antagonizing the RSD and finally made it so bad that they had to remove it in surgery.  I have asked my doctors to cut off my legs, to no avail.  I have finally made the decision to go to germany for treatment.  Please, before you get as depressed and down as I have, please write to me as I have a plethora of information on this terrible illness. LRM196

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