RSD Support Group in Southern California
 

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
 

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 :hug:

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
 

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 :D )

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 :hug:
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

hi
 

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:)

hi
 

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

Fight the Fire
 

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

hi
 

Hi Nicole,

Im so sorry, I didnt even see this post until tonite, I will private message you her phone number k :) and if you have any troubles after that, please let me know and I will pay better attention :D

Merry Christmas :hug:

Face to face support group in Highland, Ca 92346
 

There is a new face-to-face support group starting March 10,2011 in Highland (SanBernardino), Ca.
Dates: 2nd Thursday of each month
Times: 5pm-7pm
Host: Pattie Rosario (18 yrs with Rsd)

Hope to see everyone there!
Gentle hugs :-)

Face-to-face support group help please
 

ahh too far for me:( I would love to go, but can't drive more than 30 minutes. I hope the support group goes well. If anyone mentions anything about an Orange County one I would love to know. The Newport Beach one seems to be closed since no one returned my emails or calls.

I'm in the Beach Cities...haven't heard of anything yet...

Newport Beach RSD
 

Hello, I live in Newport Beach and was just diagnosed with RSD. I know one other person that also lives in CDM with RSD. Maybe we can chat?? Please feel free to call me. I would love to speak with others with this condition. ** Jennifer.

Hi I live right now in So Cal Thousand Oaks area. I think and have never been there may be a support group in LA somewhere when I had researched in the past. If you want you can email me. I always enjoy having a new buddy. Feel better and I am sorry about your dx

I also live in Orange Co. and I have been looking for an RSD/CHRONIC PAIN Support group. I have been suffering with this disease for over 18yrs so it would be nice to talk with someone dealing with the same pain! Thank you Lisa

I have been looking for a RSD support group in Orange Co. I have been suffering for approx. 18yrs and it would be great to chat with people that know exactly what you are going through. I have been in bed 90% of my day. Lisa

i feel the same way you do nicole. I also live in o.c.