stage 1...what's next?
 

HI,
It is official, the doctors at Duke confirmed I have stage 1 RSD. Now, what am I to expect to happen? I was also told that since I was diagnosed so long ago, that my chances of improvement were slim. Is that true? I am also SO very sensitive to vibrations and electrical input, that they do not feel that an SCS will be tolerated by me, but this MAY be tried. Drugs have been NO help, nor the sympathetic block. SO??? what should I expect? WHat are my options? Anyone that can offer any advice...please do! I would help you if I could. Hope each of you is doing the best you can! Just be grateful for each new day...it is MUCH better than the alternative! :)
mrshippie

I think that even though you were dx with rsd awhile ago, since it is still in stage one, your chances of improvement are better. I was dx with rsd after 4 months of having it and wasn't getting any treatments till 6 months later (with the exception of medicines that didnt work) and I have improved greatly.

I was the same. Sympathetic blocks made my rsd worse and medicines caused it to stay the same or worsen and some made it spread. The one thing i found to work was pt and ot so I would highly reccomend you go into pt and ot soon. I am currently doing it 5 days a week from 8-3. It has gotten me walking after being on crutches and in a wheelchair after 10 months even though i was starting to go into stage 3 rsd when I started. But the sooner you start it, the less chance of rsd spreading farther and reaching stage 2.


Best of luck :hug: :hug:

Wow!!! My docs made me think I was the only one responding the way yall are or did. What is ot? I am in therapy 3 days a week and I have made some progress but regressed alot. I have full range of motio with my leg. But I am still on crutches.

Ot is occupational therapy. It helps make your daily life easier. ie stairs, eating, getting dressed, walking, etc. Pt can do some of the same exercizes as ot, but the goals they are trying to accomplish are different. I work on stairs in both pt and ot. In pt, the goal is to strengthen my ankles and work on balance and coordination. In ot, they do it to help with the form and speed and also to make it easier for me if there are stairs somewhere.

Bronco, I was the same way when I started pt. I was going the same amount as you and I was also on crutches (was in right leg, spread to arms and left leg later on) and I could see some progression, but I was also regressing a lot. I never got off the crutches either. My doc said for us to find a different place. After awhile, he found one that a girl before me had completed. She was 11 and had rsd in her left foot I believe and she got discharged after a month and is back dancing again. I think she had stage 1 rsd. My doc wanted me to go and try the place she went to. I was in a wheelchair when I started and on the 5th day, they got me walking :) It is a lot of hours I go. Im in the daytreatment program and I go from 8-3 monday through friday. So, my thought on this is try to find another place.

Best of luck :hug: :hug:
Nikki

I also had very good luck with PT. I was lucky and found a good PT couple and they worked on me 2 time a week for over a year for the RSD. It takes time, it's not an overnight thing so don't give up.

Also I had good luck with the blocks and triggerpoint injections. Some people have good luck with certain meds which I can't handle. I am on Methadone which I really like but others found different ones that they could take and work for them.

Again, don't give up. I have seen a lot of what I call miracles around here with RSD people.

Ada

I hurt my back a year and a half ago. I had an awesome therapist then. I miss her she was extreamly helpful. She moved out of town with her husband. I was thinking about going to see her to see if she could help. But I am not sure about riding in the car for that long. The vibrations kill me. I am not having a good day at all today. Icant even get out of bed really. This has been a really really bad month so far. Well my b-day is on thursday and I get to see one of my p/m docs then so we will see what she says!!!!!:grouphug: :grouphug: :grouphug: :grouphug:

Oh! Happy almost birthday to you! Here is your birthday song.


Happy almost birthday to you! :cool:
Happy almost birthday to you! :cool:
Happy almost birthday to yooooooooooouuuuuuuuuuu! :cool:
Happy almost birthday to youuuuu! :cool:

Hope you have less pain that day :D :D

Good luck at the doctor.

Nikki

Thanks so much Nikki!!!

I really appreciate it. I avent been feeling very well lately.
I am only sleepinig a couple hours a night. It is starting to wear on me. Work is hounding me to come back. They just dont understand.....I dont know what to do.

np :cool:


Hope you feel better and get more sleep. I know exactly how you feel with lack of sleep. It is soooooo hard doing therapy 7 hours a day along with work and school with like 3 hours of sleep. My doc and mom are just like okay, we'll see what we can do. It is so frustrating sometimes.

Good luck at the doctor and almost happy birthday again :)

:hug: :hug:

HAPPY BIRTHDAY !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!11

hOPE THE DAY GOES WELL!!!

LOADS OF LOVE

FROGGAY XXXXXXXXXXXXXXXXXXXXXXXX:grouphug: :hug: :hug: :hug: :hug: :hug: