[olecyn]

NT RSD & CRPS patients,
I have been on the TOS (thoracic outlet syndrome) forum for years & was thinking yesterday as I read posts "I'm really missing out on so much not going to all the other forums for the RSD & CRPS forum relating to chronic pain". Below is an email I sent out to all regarding our FOUNDATION relating to patients who suffer from TOS, Chronic Pain, FM, RSD, CFS, Depression, Repetitive Strain Injury's, etc... I wanted to share with you the following information.

Check out our exciting news on the TOSS blog...
So awesome what the team is doing for the awareness of TOS, RSI & all other complications & conditions relating to this injury such as CRPS (complex regional pain syndrome), RSD (reflex sympathetic disorder) & FIBROMALAGIA!

http://tossociety.org/blog/

Dear TOS patients & caregivers,
At TOSsociety we have established by the grace of our "go-getting" Board Members a 2 day seminar for Professionals in the medical field as well as for "complimentary" professionals offering CEU's (continuing education units) for attendees.

It would be a grand idea to have TOS patients (besides me) attending to help teach the professionals from the patient's side. No, you don't have to give a talk or speeches just add your 2 cents in as I personally do at seminars & be available for the professionals to ask you questions how YOU as a patient feel about the subject title from the instructors & attendees. We as a TOS patient know so much more than the average Joe medical specialist in which they learn from us!

If you are in the Southern California area... it would be awesome having 2 TOS patients 9-11:30, then 2 patients or caregivers from 1-5 Sat, then 2 in the am & 2 in the pm on Sunday, Nov 7th & 8th. Due to our inability to sit for prolonged periods & drive; this seminar is being held at a physical therapy office in Anaheim Hills. And no one expects you to sit or be uncomfortable, "we" have to get up, move & be comfortable with our pillows, our ice packs, heat packs, & whatever else makes us comfortable. You may respond to this thread or send me a PM.


We have 40 professionals signed up with a waiting list! It's going to be a great class! Our #1 priority at TOSsociety is educating specialists & the community for TOS & RSI patients. Each attendee must provide (3) TOS patient's a 1-2hr FREE session depending on their specialty. So, you as the TOS attendee would be the first foot in the door for FREE services.

We have signed up:
Physical therapist's
Dietitian's & Physiologists
Internal Medicine MD's
Psychologists
RN's
Acupuncturists
Massage Therapists
Herbalists
Pilates, Yoga, & Energy Movement Instructors
Certified Hypnotherapists and more
*Incredible Ms Jordan, our Board Member has done awesome marketing for TOSS.

Here is the skinny on the 2-day seminar:
TOSS Professional Specialist Certification Hosted by:
Ando & Aston Physical Therapy
6200 E. Canyon Rim Road Suite #113
Anaheim Hills, CA 92807
Sat & Sun. Nov. 7 and 8. 9 - 5 PM (1 hour lunch ) 14 CEU offered.
Please wear comfortable cloths, bring your own water, snacks and writing tools.

*Please note...located on our website TOSsociety's choice of MEDICAL FORUM's is NEUROTALK! We are a 501(c)(3) public charity.
__________________

[raven2]

I do not know very much about using this form of communication. but am trying to learn. I have had rsd now called crps since 1980. I have never found anyone to share with. If there is a possibility here-please try to find and help me. Many thanks for caring!

[SandyRI]

Dear Raven,

Wow! You have been sick a long time. Your post pretty much belongs in a thread of its own, since it doesnt have anything to do with the note above it. So you may not get many responses. You have come to the right place for understanding and friendship, welcome to NT. You may want to try to post a new message in a new thread so that more people have an opportunity to read your message and respond.

Good luck. XOXOX Sandy

Originally Posted by raven2

I do not know very much about using this form of communication. but am trying to learn. I have had rsd now called crps since 1980. I have never found anyone to share with. If there is a possibility here-please try to find and help me. Many thanks for caring!

[olecyn]

RAVEN...
Your post says it all for a CRPS patient. And Yes! You do belong on NT & YES we, TOSSociety needs your response. We are navigating towards helping others with chronic pain caused by CRPS no matter your injury or condition. RSD is a condition related to so many issues & carries a heavy life-changing burden for us. I too have had it 10+ years & learning from my "team" & research there are things we can do.

THANK YOU for your post. I now know our website needs a page devoted to CRPS patients with extreme RSD. It gives me some ideas for the seminar & the educators teaching.

[olecyn]

You have come to the right place here on Neurotalk. There are so many fabulous people you can talk with or just sound off. Keep reading the threads & post yourself. I found this incredible site years back when NO ONE could help me, no dr knew what I had...36 professionals later I am finally getting treatment. Everyone here has something you can relate to & apply to yourself.
Cyndy

Originally Posted by raven2

I do not know very much about using this form of communication. but am trying to learn. I have had rsd now called crps since 1980. I have never found anyone to share with. If there is a possibility here-please try to find and help me. Many thanks for caring!

[cindi1965]

Originally Posted by raven2

I do not know very much about using this form of communication. but am trying to learn. I have had rsd now called crps since 1980. I have never found anyone to share with. If there is a possibility here-please try to find and help me. Many thanks for caring!

You came to the right place, hon! This forum is where I find peace and love and understanding. I have had RSD for almost 1 and a half years. I found this forum this past summer and my family is sooooo glad I did. It has really changed my life.

If it weren't for this forum I would still be laying on the couch feeling sorry for myself, because the medical professionals that I had been seeing beat me down except for my MD. He has Multiple Sclerosis and understand what I go through. The neurologist that see now is very helpful, but I went through about 6 before I found someone who would believe me.

My MD was the only one who has see my left leg in a full blown flare. I acquired RSD after a serious bout with a staph infection that turned into MRSA

So, here you are certainly among friends, everyone has been through the same thing. Don't be afraid to speak up here as you will find the wonderful people on here will welcome you with open arms. (((((Gentle Hug))))

Cindi

[olecyn]

Happy to hear we will be having patients from across the nation coming. Mi casa su casa. Time to find a helper to organize my house & the guest rooms.