Posted by Becca (184.108.40.206) on May 19, 2000 at 22:59:21:
I've been chronic for 15 months now and am currently on a very predictable pattern of 9pm and/or sometime around 3am that my "real" CH's happen, I have shadows on and off all day. I know there are people out there way worse off than me, I know I shouldn't feel sorry for myself. But, after weeks of being woken up in the middle of the night with this 8+ pain and not getting back to sleep and then going off to work and dealing with shadows of 4-6 all day and just when I want to relax with my honey another 8+ comes along. I'm just so weary of it all. I'm on massive doses of neurontin, and started amytryptilline 3 weeks ago, on 50mg of that and I've been on prednisone for the entire 15 months. My main goal is to get off the prednisone as it seems to be taking more and more to keep me "pain free". I'm now down to 13 mg and at a taper of 1 mg per week the taper seems unending and very very difficult with all this breakthrough pain. I guess I'm just wallowing in self pity tonight. I keep telling myself that it's good they come on at night, at least I can continue to work. I just don't know how you guys deal with it for year after year. Does it get easier? Do you just learn to ignore it? There isn't a day that goes by that Scott doesn't ask me about my head, my drug levels or something to do with this demon. Will we ever be able to exclude him from our relationship? Someone please tell me how to deal with this.
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