I'm so sorry I didn't respond sooner-- I just found your email today, and hope you are still checking in.
I've had RSD for 7 years, after a partial amputation of my hand following bone cancer. It was absolutely intolerable pain at first. Fortunately, I work in the medical field and figured out something was terribly wrong. I self-referred to a pain clinic, where they recognized what was happening.
I then got adequate treatment for about 4 years. I have no problem taking narcotics, along with all of the usual meds for this-- it allows me to continue a high-level academic job (I'm a professor), when otherwise I'd be in bed or dead. I've also had a lot of nerve blocks, with limited success.
I switched pain docs several years ago when my original doc's nurses began to suggest that I was abusing the meds. I was not, and every time they brought it up could prove it, but I found it unacceptable that they made the accusations without evidence. In truth, I think, they were disappointed that I had not been "cured," which was naive, and became frustrated.
My internist helped me find another doc, who has been a Godsend. I have good and bad days, but no days like what you are describing (although i did at first). I follow the medical plan exactly, whether I feel good or bad, because I know I need to maintain a blood level of these meds.
I try to exercise, sleep well, and all the other things-- but it's tough with my job. I just wanted you to know that IT DOESN'T HAVE TO BE THIS BAD, and a good doctor will help you get better pain relief.
If I can do anything to help you, please don't hesitate to email. I'll be checking in here for the next week-- promise.
Take care! |
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