Posted 8/1/2013 3:13 AM (GMT -6)
Doesn't it seem like we're always in a deadspin, between our practitioners and ourselves, bouncing between having the ability present our CP issues in advance, hoping to head off exacerbations, or at the least, spur diagnostics. Most of us have multiple CP issues, from different sources, some related, some not, flare ups from annoying to intractable, exhausted from pain. I've been on my fair share of prednisone 50mgs as well as Medrol dose packs. I know I've even come across as desperate because the pain is destroying my quality of life.
I'm always interested that despite the warnings, many of us get jacked up on prednisone for temporary pain relief, (and it's not a narcotic so they feel safer?)......
Please correct me if I'm wrong, but from what I've learned the side effects of repeatedly going on and off of prednisone, especially at the doses many of us get, there's a type of alga rhythmic correlation making each successive dose more damaging, less effective, and magnifying our risks with each subsequent dose for a multiple of issues.
But,...it's not narcotic. But from what I've read, the dangers are frightenly significantly greater to our whole bodies, putting our bones, immune systems, endocrine system,...at far more risk when compared to carefully monitored narcotic pain medication. (Not addressing the anti-inflammatory benefits of prednisone, just bringing that up).
They dispense that like candy, and as helpful as it is, I feel little regard is given to the long term damage to our bodies,...(but heck, they feel it's "safer" because we won't get "addicted" to this,....but we can develop organ failure, irreversible orthopeodic damage, and endocrine damage).
The pervasive "this is part of your disease/s" comments, and the "you're just going to have to learn to accept and live with this" comments, are so ignorant and berating and condescending to those of us who suffer for years and through the process end up, many times, being more informed than our care givers.
My sympathy, my empathy, my understanding,
Sookie (still on ice, been up since 02:32 from pain and it's now 05:13, no sleep, just pain, discomfort,....I can't fall asleep no matter how tired I am).
Best of luck and please stay in touch with us.