I could really use some help with my rsd.?

Question

Hey everyone. My names Alex, I'm 13 and Ive had rsd for about 2 years. I have had it since about early october 2006. I fell and I got up normally once I put wait on my foot I felt a sharp pain in my big toe. A couple days later I went to a routine check up and asked my doctor about it he thought it was just a bruised bone. He told my to just go easy on it and take Tylenol or advil. About a week later it was still there so I went to see another doctor at I think forbes regional. He thought I had a fractured growth plate so he told me to wear one of those black sandal like boots. After another visit to him I went to another doctor at the children's hospital he decided to put me in a cast I was in it for about 2 weeks after it wouldn't go away he figured out I had rsd so he told me to go to physical therapy and get nerve blocks. I did that for about a month it started to get worse and spread I eventually started going to 3 therapy sessions a week at the children's institute. Still got worse. So my parents and therapist decided to put me in the inpatient therapy. WORST EXPERIENCE OF MY LIFE! I had to do therapy non stop from 9 to 12 got an hour break to eat then did therapy from 1 to 4 (constant excruciating pain). I also had to sleep there. I did physical therapy, occupational therapy, bio feedback, saw a shrink, and did recreational therapy. I was depressed all the time. I continued to get worse. After a month my parents decided to pull me out because of emotional state. I started to get reiki and now I am taking neurontin and getting reiki from my mom who's has been training ever since I started getting it. Right now I have on all of my right foot constantly have to have it elevated cant touch it or even turn on the air conditioning or turn on the radiators in the room I'm in. I could really use some help please suggest a medication or something that helped you. I would really like to get back to my normal life even though I believe this will extremely help me in the rest of my life.

Answer 1

Do you see a pain management doctor that specializes in RSD? What treatments have you tried besides the inpatient physical therapy? There are some people that the physical therapy helps, but I know the physical therapy didn't help me either. Have you tried anything like sympathetic blocks, a spinal cord stimulator, epidural catheter, or anything like that? There aren't really any medications that help with RSD/CRPS pain. For some people Lyrica or Neurontin help, but narcotics do not do anything for the pain. I would get in touch with a good RSD/CRPS doctor, and they should be able to find something to help with your pain. Good luck and be patient, I understand how hard it can be! You also may want to join a support group for teens with RSD/CRPS. There is one group in the Yahoo Groups section that is called rsdhopeteens that is a good group for teens with RSD/CRPS.

Answer 2

Need to take it easy, dont let it get you down. The medical stuff is coming out at an amazing rate on this. Unfortunately the Drs. are so full of themselfs they dont read the research. You need to do your own research. They just want to put you threw there money mill. I use Ice with good results  and sometimes alternate cold/hot/cold 5 min each. Revamp you psych. by being positive that God will heal you. He loves you and has a plan. Sometimes his timing is  a little different then ours. Trust him to guide you. You can listen to Drs. but never put totral trust in them, that is reserved for Christ only. God bless you.