[Jennelle]

Hi everyone!!! Sorry I have been so far out of the loop lately! I have been at the rehab institute of Washington (RIW) for weeks! For those of you who don't know I was hurt at work (I am nurse) and ended up with rsd. The good thing is that I have met quite a few people with rsd while there. They range from pretty functional to little movement of the effected limb. It is rare to actually encounter someone else who has this other than on the internet. So I would say that is positive for the program.
I went in so ****** off and not wanting to do a "pain" program...but now after weeks.....5+ I am GOING BACK TO WORK!!!! I finish the program this week and start work the next. I won't start back full time but it is better than nothing! I just wanted to let you all know that there is hope! They took me off all my meds...and then started guinea pigging me on others for the pain and finally put me back on my narcs....at least I was able to be off them for awhile and get to take lower dose now but I wouldn't recommend the process. They totally lied to me that I couldn't go into the program if I was on narcs but then when I got there and met other rsd people I found they all were still on them.
Anyway, sorry to ramble I have just missed you all and hope you are all having low pain days and am thinking happy thoughts your way!
Jennelle

[fmichael]

Jennelle -

Glad to here you sounding so well, even if your what you've been through confirms some of the steriotypes surrounding the whole cognative/behavioral approach.

Just curious, did you have discussions with any of the doctors regarding taking small amounts of opioids in conjunction with tiny amounts of a mu-opioid antagonist (naloxone for one, but there's a newer one that's supposed to be better) as a potentiator? On a "clean" system, it's supposed to be a terrific combination.

Mike

[ali12]

Hi Jennelle,

I too, have been out of the loop lately (been busy with school stuff) so have only just now seen your post. I can't begin to tell you how I happy I am for you - you must be over the moon at the improvements you have made!!

As you know, I have been onto a Program similar to yours except mine was for Children and Young People. Like you, I was took off all of my medications whilst I was on the Program (It didn't really make that much difference to me as none helped me anyway) and I had to have 4 hours of PT a day as well as support from the hospitals Psychologists and Doctors.

The Program was really tough and excurutiatingly painful but it did help me! When I went onto the Program, I was in a wheelchair as I had lost all coordination in my legs but after 3 weeks there, I was able to walk short distances.

The PTs weren't that happy with the progress I made the first time so I had to go back once again. Unfortunately, I didn't make any progress that time and had a few set backs but I am still walking now which has made a HUGE difference to my life ... I never would have been able to go to College if I couldn't walk! I still have LOTS of pain which hasn't changed but it really helps now that I am able to do things for myself!

I really wish there was more of these programs ... obviously they aren't for everyone but even if they could just help a little, it is better than nothing!!!

I am SO proud of you for sticking with this! I know it isn't easy and that many times, you will have felt like giving up and i'm SO happy that you didn't!

Good Luck with going to work - I hope all goes well for you and that you make more improvements and are able to lead a normal life like you so desperately deserve!

Take care of yourself!
Alison