Looking for support network in the L.A. area

Reflex Sympathetic Dystrophy Syndrome
#1

Hello There:

I am newly diagnosed with RSD. I have a torn rotary cuff in my shoulder and as the pain and burning became unbarable, the Dr. said “Oh this is “Dead Arm”, I can not do surgery until it’s worked on”.

“Dead Arm !” was my first introduction to Reflex Sypathetic Distrophy.

I take the meds and HOPE any pray for the best. I am coming to terms with this disorder and want to absorb as much information as possible.

I would like to know of anyone in the Los Angeles area to build a support network in my own back yard as sitting at the computer for long periods of time is painful. I am thankful for your support.

God Bless

Sarita

#2

Hi Sarita,

My name is Jennifer and I too live in the outer L.A. area in Thousand Oaks. I am an RN that was newly diagnosed with RSD in my left arm after a work injury. I would love to get to know you better.

Pressing On,

Jen

-----Original Message-----
From: Sarita rsds-cpt5141@lists.careplace.com
To: jenben91320@aol.com
Sent: Mon, 9 Jul 2007 8:25 am
Subject: [rsds] Looking for support network in the L.A. area

#3

Hi Sarita,

I too have RSD, I got it from a Left Shoulder injury that went horribly wrong. After several months of therapy, with the pain increasing, the WC Doctor decided to do exploritory surgery to see if he could find out what was wrong. He found out that I was dislocating on my own and decided to do a Thermal capsulary shrinkage. After the surgery we thought everything was going to be ok. After the six week postop. I went back to the doctor and I had a cold spot on my shoulder and my elbow was going numb and my ring finger & little finger were burning. We’ll his statement to me was I don’t know what I did wrong! Isn’t that what you want to hear from your doctor. Come to find out he either tightened my shoulder to much, or burnt my nerves when he was in there. That was Nov 2002. The RSD has decided to spread from there. I now have it in my whole left side from head to toe. And now in my right foot.

I live in Southern California, Outside of LA, about 2 hours. I have been looking for support groups too. but I am unable to drive long distance due to my feet. I can be an online buddy thou.

RSDKITTY

#4

I don’t mean to sound crazy because this condition is totally horrible, but when a doctor says i don’t know what I did wrong I just have to kinda laugh. Very few doctors know what RSD is and that I find horrifically sad. I’m seriously hoping to change that.

Pressing on,

Jen

-----Original Message-----
From: rsdkitty rsds-cpt5141@lists.careplace.com
To: jenben91320@aol.com
Sent: Mon, 9 Jul 2007 9:25 pm
Subject: Re: [rsds] Looking for support network in the L.A. area

#5

Dear Jen:

Thank you so kindly for responding to me. I live in Redondo Beach, and like
you I can’t drive either. I have lost range of motion in my arm and between
that, the stabbing pains and the meds, driving is out of the question.

I can only type for brief periods of time before I hurt too much, but a pen
pal would be really great. This whole experiance is surreal. Like that
movie “Ground Hog Day”, I feel trapped in a bad movie and someone is supposed to
wake me up. I use to fish, play softball and volleyball, go to the harbor on
our boat. Now I can’t even cut my own meat and get stuck trying to take my
shirt off.

Breifly, I am waiting for WC to come on board and through my private
insurance, have had a nerve block injection that didn’t work at all. I’m on pain
meds but the Neorontin did nothing but make me gain weight and acne. Waiting
anxiously for the next M.D. attempt at fixing this disorder they don’t
understand.

You really know who your friends are through something like this, I tell
you. I try to get out socially a least twice a week less than 2 hours. I keep
my sense of humor, through the pain. It’s important for my spirit. I feel
better to make my friends laugh. I paint alittle with my right hand. I go for
short walks with a sling and ice my arm 20 on 20 off, afterwards.

I remind myself to feed the spirit and keep some sense of independence.

Be strong girlfriend.

Aloha… Did I spell that right (HAHA!)

Sarita

************************************** See what’s free at http://www.aol.com.

#6

Hey Sarita,

??? I have to tell you that I think Sarita is just a beautiful name :). Anyways, I was reading your email and something caught my eye at the very end…DON’T ICE YOUR ARM! Stay away from extremes in temperature as this can flair up RSD. This is something I learned in the past through several doctors and my physical therapist. Instead, you can put your arm, as difficult as it is, in cool, not COLD water.
??? I also used to live a very active. I was quite the antsy 24-year-old. My boyfriend of 2 years lives in orange county as well and I used to drive to see him at least twice a week. Now, he does the driving and he has been really great about. I think he’s totally a keeper! I go out for small brief periods of time as well to keep my spirit up. I’ve also become addicted to the show Man vs. Wild on the discovery channel. I used to travel a ton to different countries and I think that lives on through that show lol.
??? You are so right when you say this condition is surreal. There have been many of times when I will be in the car with a friend of my boyfriend and I watch people going to and from work living their lives, while I often feel out of touch with reality and don’t work. In fact, I haven’t worked for almost a year now and probably never return to the nursing profession as I was before. Some days this is totally disheartening as I had just graduated that May and had only worked as an RN for 3 months. I went to school for 5 years and hardly slept, worked continuously just so I could fall on a very wet floor with no wet floor sign posted in the nursing station at the end of my shift.
??? I guess I don’t expect a cure of RSD. Although, I pray for one regularly. I just want to live as normally as I can with minimal pain…and move to Washington hehe.
??? Please feel free to write me at my personal email jenben91320@aol.com.

Pressing On,

Jen

-----Original Message-----
From: Sarita rsds-cpt5141@lists.careplace.com
To: jenben91320@aol.com
Sent: Tue, 10 Jul 2007 2:01 pm
Subject: Re: [rsds] Looking for support network in the L.A. area