Reflex Sympathetic Dystrophy (RSD)

[kirstenga]

I was recently diagnosed with RSD by a rheumatologist. And upon her referral I'm going to see a pain specialist tomorrow. I now realize that I have been suffering from RSD for a number of years and was unfortunately misdiagnosed. It has become severly disabilitating, thus my whole life has been disrupted. I never know one day to the next what I'll be able to do physically. I currently homeschool my two young sons and desparately want to continue homeschooling. I guess what I'm looking for are other experiences out there. I have been experiencing short term memeory loss and I was wondering how common that is with the RSD or if it is due to the Neurontin I take, or a combination of both. I'm looking for any positive/realistic scenarious that there may be. And any suggested questions for the pain specialist would be most appreciated.
Thank you,
Kirsten

[Teresa J]

Hi Kirsten,

I so very sorry that you have been misdiagnosed for so long, and now have been told you have RSD. Both misdiagnosis and the diagnosis itself are not real winners. Homeschooling two young sons seems such a wonderful, rewarding thing to do. It is, however a 48/7 kind of a job. Yes, 48 meaning you are putting so much effort into such a worthy cause.

My story began in Aug/05 and in Jan/06 was diagnosed with bilateral foot RSD. I wanted a diagnosis and I got one. Just not the one I had hoped for. Since that time I have been in many forms of treatment. Beginning with bilater ankle blocks, PT everyday for 1-1/2 yrs, medication changes for 2 years, and last but not least a three-week out-patient pain clinic stay at Mayo Clinic in Rochester, MN. Since you were inquiring about a program, this is one I personally have attened and found many rewards. The best of which is the keeping with the state of mind, "I am in pain, So what?" Where do I go from here. I met two wonderful people in the clinic that I continue to share time and friendship with. One who lives in VA and on in MN.

I would recommend the program to you. Talk to you doc about a similar one that might be close to you. This is a Pain Rehab Clinc, not a drug rehab program.

Thinking and praying for you in your pain,
Teresa J

[Lily]

Hi Kirsten,I'm sorry also for having to go all those yrs not knowing what was wrong.I know you have been in so much pain.I have full body rsd and i can't image what you have been through. You are a strong person and dedicated to your children,Yes the short term memory is part of rsd and i'm struggle with it everyday.sometimes i can't remember even what i was doing.I hope you continue homeschooling your children it will help you also.My son is in school and i had to get a tutor to help because i forget how to do solve the problems and i really bothers me.I noticed i will go back over everything i did because i can't remember if it got done.Don't give up sweetheart you can beat it.I hope to hear from you often if you just want to chat or vent about anything bothering you.We are all in this together and we can help each other through.I will help you any way i can.Love lily

[brendalee]

Hi kristen,
I know what you are going through. I have RSD in my left arm very bad, a milder form in my right arm and also a milder form in my left leg. It all started with a car accident 5 yrs ago. Last april my doctors recommended a spinal cord stimulator. I had it implanted and it was the best thing I ever did. Then in October of last year they had to go in and do a revision. They inserted a paddle lead to the base of my scull to attach the wires to so they would stay where they were supposed to. I awoke in the worst pain I have ever had in my life. The air hurt my arm. I initially went in for the right arm. The left arm was the one in severe pain. It had never given me trouble before that. My nuerosurgeon said he thinks the paddle lead was too big for the space and I ended up with a spinal cord crush injury. ( C-5 nerve root )I was like a stroke victim when I woke up. Couldn't walk , couldn't use my left arm. They took me back to surgery 3 hours after they implanted the paddle lead and removed everything. I have been going through pure hell since. I am now on time released morphine 2x a day. Cymbalta, which I highly recommend. It is for severe depression, but also used to treat nerve pain. It has worked the best for me. I have tried all the rest out there. I also take 4mg. of dilauded 2-3x a day.
It helps me to function believe it or not. I work a 45-50 week and I also have 4 grand kids. The youngest is 9 mos. and I get her on a daily basis. Some days are pretty bad, can't get out of bed, but you have to keep thinking positive and keep the will to go on every day ! DON'T EVER LOSE THAT ! If you need someone to talk to I am here, for anyone reading this. We could all use a friend at one point or another who understands. Keep up the good work with your children and stay positive...Good luck and God bless....Brenda