Quote:
Originally Posted by whisperstothesun
Hello All!
Though I have been living with RSD, non diabetic neuropathy, seizure disorder and post concussion syndrome for over 18yrs now, this is my 1st time joining a forum/support group.
Briefly, I was in an automobile accident in April 1992. Prior to this I was a Classical Pianist preparing for the finals of the Murray Dranoff International Piano Competition in Munich, Germany (similar to the Olympics, but for music). Music is still my passion, but I am too disabled to have an advocation. Instead, I live vicariously through my 1 miracle child, who shares my prediliction for all things music. Though the RSD is at times all consuming, I feel lucky because the accompanying head injury hangover allows me to forget at times! 
Actually, my intractable pain is still progressing. Though I'm on High dose long term Opiod therapy, I have still developed cardiac-adreanal insufficiency syndrome. My endocrine system is shot. My pituitary has all but stopped working. I have exhausted all other options for therapy, and have been told by a group of Drs. who did a study on me (18yrs is a long time to live with RSD) that opiods are all that's left. I am not even a candidate for the deepbrain implant. But lately I am more worried about the validity of being able to continue my meds in the current political/medical climate. So I am joining here to make friends, speak out, and seek/provide support to my fellow suffers/survivors. I hope to meet each of you! Please say "Hi", and if I am discovered wandering aimlessly around forums, please remind me that I am an RSD'er with a brain injury and redirect!!!  |
Hello and Welcome, Whisper/Sun!
We have a lot in common, and as you've said I can report to you that to have RSD/TBI at the same time is incredibly rare, and the two injuries work against each other. I answered you on another thread about the opiods/long term.
The head injury hangover and the RSD brain, can make coping very difficult. The difficulty with decisions, the panic attacks when you need to do something serious and can't decide and your brain shuts down. The long term depression. It just all adds up to create a 'cycle' that seems like the suction of a drain sucking you down!
My thoughts and prayers to you!
I look forward to speaking with you more. (BTW, I do use methadone amongst my 'cocktail', have had RSD for just under 28 years, have a tbi from another accident in 98, and owned two business's and was a guitarist in a couple of bands, raised two children as well, whom now that they're grown, no longer speak to me)...
My subdural hematoma was just above my brain stem, and I have huge suspicions about my pituitary gland, and there's another smaller one under it, which I forget the name of right now. Maybe you can answer some questions for me about that?
Life is just a bowl of cherries!
Be well,
Pete
asb