Since that group meets only in the daytime, my thought would be to call up the leader and see if she is willing to talk to you by phone and also ask for the names of people in the area that have the RSD and call them up and talk to them for support for you and them.

My experience with a group is that it's hard for them to even go to meetings. Some meetings in bigger cities might make it due to being so many members. We had a group here for awhile but our area isn't that big and the leader wasn't wanting to even have it half the time. I have met a lot of RSD people around here though. I have one that lives 3 doors up from me. I have known her for years before she got the RSD. I know the others from the group. RSD is so rare that it is hard to meet people with it. After the group broke up we went our own ways but I still hear and see some of them at times. Most don't get out much. i met one when I got my hair cut once. The beautician had a friend with it and when she found out I had it, she would schedule our appointments around the same time.

Also you might put an ad in the paper that you have RSD and that you are looking for people to share their experience with you. They have done that here.

As I said though, what I have found is that it keeps people so homebound that they can't get to know each other much anyway.

Nikki is right about what it brings into our lives and changes. I get very frustrated with mine but I have came out with some great Drs. due to it and friends that really care and know what shape I am in. We have also found each other through these forums and a lot of us have bonded and become the best of friends. Several of us talk on the phone with each other.

It sure isn't easy what we are going through and I do know I am farther along then you most likely are in getting into remission but I know you will get there in time and find the reason you ended up with this. One of the greatest blessings in my case is my Dr. and his office staff. They call me at home to check on me and talk to me to make sure I am doing ok. Susan, my daughter is my caregiver so I see her a lot, that makes it a blessing too.



I hope you start finding some better days soon. Don't give up.

Ada

To December and Lost,
I'm so sorry you are dealing with this monster, raising children, losing your wife especially. You are overwhelmed with grief. Depression is a big part of RSD. It affects the Limbic of your brain that controls emotions like depression. My Dr. has me on double strength anti-depressants which also work on lowering pain. I have full body RSD. The anti-seizure drug Lyrica has helped me lower my pain meds by a third..I found I just couldn't adjust to RSD so found a wonderful Dr. neurologist, pharmacologist, and Pschiatrist. I just needed my head adjusted to go thru the grieving process. I had always been such sports enthusiatrist. water skiing, snow skiing, tennis( lots of tennis working out at a club, swimming, 10k's, I've had this 12-14 years gained weight with all the drugs. So now, I've got my emotions more under control and looking at my life in a positive way and goals for health care, asking about others, doing what I can to encourage others. Be positive, Using music to life my spirits.Ii miss the sports so much,,,,but reading more ,
using the internet to encourage others and the phone. On the spine
stimulater, I've read a lot and I'd encourage you to do the same, on past information on the forums. This one and the brain communities. You might want to start a thread and ask others about their successes or problems.
We have a neurological center here in Phoenix-Barrows.We have a support group that meets monthly. That has been wonderful. Finding a local friend that also suffers from RSD can be good if positive. I Wish you peace and
the gift of knowledge you can gain from this forum and others. Sincerely,
Loretta Jewell