I was wondering if anyone knew of a support group for RSD sufferers in SoCal? Or it could be one for chronic pain patients as well. Perhaps we could start one if there is not already one. Let me know if that is something anyone would be interested in.
I find I get lonely and depressed these days being home alone and not able to go out due to the pain. I thought it would be nice to meet people who understand what I'm going through. Hopefully we could support each other and find ways to stay positive in this challenging time. The Neuro Talk board is helpful, but I prefer to be with people in person or at least talk to them over the phone.
-Nicole
Resides in Orange County

Dear Nicole -

I stay in touch with a number of people in the LA area over the phone, and have acquired a couple friends with whom I break bread now and then. In my experience, these contacts are unambigiously good, except it can be painful when someone breaks off with you more or less without notice. (And note to Laura: I owe you an email BIG TIME!!! 1,000 apologies.)

That said, I know that a lot of other folks are involved in much more extensive email networks and the like, although to my knowledge, most of them are not area specific.

Please send me a PM with your contact info.

Mike


PS There was a more formal organization - I believe a chapter of the RSDSA - that was active around the time I got my Dx, but as was explained to me in a 2002 phone call, they were as a group devotees of a neurosurgeon, Aaron G. Filler, MD PhD, now in Santa Monica, who performs surgery under MRI to releave "nerve entrapments," and were all basically recovered, so my caller saw her group as in the process of shutting down.

Where it's a highly controversial procedure, due to the strong chance of developing entrapping scar tissue from the surgery itself, and I knew that the deep location of my injuries didn't lend them to a favorable surgical outcome in the first place, I never pursued it. (Although no longer on his website, at onetime it contained an extensive list of papers that had not been accepted for publication, for whatever reason.) http://www.nervemed.com/about/dr-aaron-g-filler-md-phd

Hi Nicole,

I'm not exactly sure where in Orange Co. you live but hopefully this group woud be close enough to you:

Lakewood California -- RSD Support Group -- "Circle of Hope"
Meetings are held on the 3rd Wednesday of each month at
Lakewood Regional Medical Center located on South and Downey Avenue.
Meeting time is 7 PM - 9 PM.
Contact Person for more information is Susan Marie Anderson --- Phone at
(310)833-6945

NewPort Beach, CA 92660 -- "Fight The Fire!"
Meets the second Wednesday of every month from 6-7:30pm.
400 Newport Center Drive, Suite 410
Newport Beach, CA 92660
Led by Timothy L. Sams, Ph.D. ---- Coordinated by Shari S. Suzuki, Rs.D.
For further information, please feel free to contact Shari S. Suzuki, Rs.D. who's email addy is: RSDLAVA@aol.com



If these are too far, let me know and I will see what else is in your area. Susan or Shari may also know of one closer as well.

Take care,
Dee

Hi Dee, I also live in Arizona. I belong to the Phoenix RSD support group-Margie leader, but don't attend regularly. I live close to the Mayo Clinic on 56th St. Do you live in the area? your friend, loretta

Hi Loretta

I live right next to Laughlin, NV/Bullhead AZ line, but I do enjoy visiting Phoenix. I have only lived here for a year now and know more about LA because that is where my RSD doc lives ( and one of my favorite tat artist )

I am so happy you wrote and said hi, its nice to know someone who is too far away!! If you ever want to talk or need a shoulder/friend to lean on, just hollar k!

hugs
Dee

Dee -

Good work! Lakewood is in SE LA County, but Newport Beach is the epitome of Orange Co., if not necessarily centrally located. Where did you come up with these?

(The RSDSA site doesn't show anything in the area.)
http://www.rsds.org/4/support_groups...tml#California

Mike

hey Mike,

Back when I first traveled from the East Coast to the West Coast, there was a wonderful lady who shared the support group info with me. She had given me a list and a website which listed the groups ( I was constantly traveling back and forth not only for treatment, but avoiding cold/snow)

I will search my records and find the website for everyone.

talk soon,
Dee

Hi Dee,

Thanks for that info! Newport Beach is close to me (I'm in Irvine). I will definitely have to email the group and see if I can become a part of it. Thanks so much! I've been looking for something like this for a couple years! Who knew all I had to do was post on here

your very welcome, and I do hope this works out for you. A very kind lady shared a ton of info with me when I first came to Cali., so if you have any trouble getting ahold of that group, just give me a shout and I will see what I can find out for you

take care,
Dee

Hi Dee,

Sorry to bother you about this again, but I never got any response back from Fight the Fire Support group in Newport Beach. I emailed them a couple weeks ago. I was just wondering if you had any other contact info for them?
Thanks for your help!
Nicole