Quote:
Originally Posted by Tink-r-bell
Thanks So Much Linnie!
It's always great to meet another Tinker Bell person 
I too am very much like her and I think that's why this crazy thing is so tough. I'm not on any stronger pain meds because my pain doc knows how opposed I am to taking anything. Maybe it's my fear of being out of control......I don't know. But every time he suggests a new drug, I feel that much more out of control.
I was always the kind of person that avoided doctors like the plague (I'm doctor-phobic) and to have my life changed so dramatically over the course of 2 years, with doctors playing such a big role is a bit overwhelming.
I'm rambling again....sorry. 
I am on Ambien to help me sleep....I didn't realize just how important a good night's sleep was until I finally got one. It helps, but I still wake right up when things get really bad.
I'm so glad that I found this forum.....I don't know anyone personally who can understand....So, thank you to everyone here  |
This forum is great and seems to be improving every day. Having people who understand my problems is really helpfull since even docs sometimes don't. Comparing notes and keeping up with the research is also useful. It's a shame there wasn't such a resource in '98 when I got RSD though I might not have found it since I didn't know what my problem was until much later.
I've tried cymbalta and find it highly effective. Unfortunately I can't both eat and take it.
Sleep is simply critical to my well being. I have to get a good night's sleep to have a chance. The doc put me on tizanidine as soon as I started having a lot of trouble with insomnia and it helps a great deal. Apparently I have a very fine tremor that is barely noticeable but it keeps me awake. The tizanidine stops it. Now days I also take a little seroquel as well which helps calm me down. Usually if I can't sleep it's an identifiable reason and I have other medications I can take for them.
I would suggest that you use as little to help as you can get by with. Most people with this problem end up on a lot of drugs. Be sure one is helping if you're going to use it and always let the docs know what's going on.
Working with the doctors was one of the hardest things for me as well. While I've always had great respect for their tremendous amount of knowledge I've always had great fear of their ignorance. I try to stick with docs who fear their ignorance as much as I do.
There are a lot of good doctors out there but try to be sure you understand what they're thinking. Don't take it personally if they talk about mood drugs since this problem is extremely depressing and it appears to affect the brain in numerous ways. And then of course, the brain affects the disease also.
Hang in there. Don't give up. This will change your life if you can't get it in remission but it doesn't have to destroy you.