by Guest » 08 Dec 2007, 13:55
Thanks to all who replied. I really appreciate the time you took, sincerely.
Fissulyna, I'm sorry you suffer from the same condition as me, but it is nice to have someone on this board who also understands the multiple complications we endure.
As for the pain control, I wish I could say that it was under control. I was so happy when Lyrica came out, I wanted to jump up and down -- there was hope after all, and there were actual commercials to advocate our problems to the public and to add realness about it.
Unfortunatelly, I am highly allergic to Lyrica; I break out in terrible blisters from it. So out went that drug. I've got a very understanding Dr. who has a wife and daughter with the disease, so he places no questionality to the disease whatsoever. He is a neurologist. The downside for him is that he is so busy that I rarely get to speak to him unleess it is an actual appointment, and his staff annoy me to no end.
He has worked tiredlessly with me to see what works. It began with Ultram --had really bad out of body experiences. Remember, this is the pain only that I am addressing, not the other stuff -- I have a long list of meds I take that help in other areas such as sleep, RLS, trigger points with regard to my MPS -- it then went to Lortab, then Norco. We had no success, so I tried the Duragesic patch. THAT helped immensely!!!! I don't know what I'd do without it. You, if not already on one, will have to work with your dr. to obtain the correct dosage for yourself. I change it out every 48 hours rather than 72, because he know it does not last 72 hours on me. For breakthrough pain or for days when I have flares, he has tried me on oxycodone, and now we are working with oxymorphone. I cannot say that this is any better than the Norco was though. I work daily on my warm water therapy, and that helps a lot, too. The key there, though is knowing and adhering to your limits.
If you EVER have any questions, please feel free to ask away. I am a research freak when it come to my FMS and MPS because I want to be drug. free one day. It took him a while to make me understand that I am not becoming a drug addict, but rather dependent, so that I might lead as normal a life as others do. I never have pain less than a 2, but when my pain is at a 2 I rejoice and thank God! That, for me, is a HUGE thing! I have accepted that I will always have pain, but by taking care of myself, knowing and accepting my limits, and living as healthy a life as humanly possible, I am doing my part.
I have lost a lot of friends throughout this. I used to be very active. I am not anymore. It has become lonely. BUT, you know what? I have my amazing husband, my two kiddos, and my faith. You learn who cares, truly, and give thanks for those people.
Again, feel free to ask any questions at all at any time. I'm here for you.
Gentle hugs,
NW