[olecyn]

I am new to the RSD forum. Usually on the THORACIC OUTLET SYNDROME forum. I have read so many posts & threads here & feel like a newbie in a very strange way. I have been on the TOS forum for years.......Wish I had come here when I was told I had RSD with my TOS. You guys are incredible here. So much knowledge.

I learn more each time I come here about our CRPS/RSD/FM issues. Can u hear me say "O My gosh, look at this, thats what I go thru, thats what I feel like, I didnt know that, o look at this post. o, o, o"

Can anyone explain why the states & docs do not acknowledge FM or RSD as they are dilbilitating to the fullest extend from the original injury & compromises our day to day lives more than they know. No matter how u look at it I am here to learn & add my 2 cents once I feel more comfortable with you~all. Our foundation is geared towards education in the professional & complimentary services world to help others with CRPS, Chronic Pain, FM, Depression & of course TOS. The TOSS foundation, www.tossociety.org was founded & dedicated to me by my hubby. I am learning so much more being here & dedicated to add pages of information in all relating conditions. Any suggestions welcome as I am a contributing honorary Board member for the BOARD Members & team.

[AintSoBad]

Welcome Cyndy!
This is a very nice group of people, and you'll fit right in.

I got TOS from the same injury that caused my RSD.
OUCH!
Two very misunderstood ailments.

Pete
asb

[loretta]

Originally Posted by olecyn

I am new to the RSD forum. Usually on the THORACIC OUTLET SYNDROME forum. I have read so many posts & threads here & feel like a newbie in a very strange way. I have been on the TOS forum for years.......Wish I had come here when I was told I had RSD with my TOS. You guys are incredible here. So much knowledge.

I learn more each time I come here about our CRPS/RSD/FM issues. Can u hear me say "O My gosh, look at this, thats what I go thru, thats what I feel like, I didnt know that, o look at this post. o, o, o"

Can anyone explain why the states & docs do not acknowledge FM or RSD as they are dilbilitating to the fullest extend from the original injury & compromises our day to day lives more than they know. No matter how u look at it I am here to learn & add my 2 cents once I feel more comfortable with you~all. Our foundation is geared towards education in the professional & complimentary services world to help others with CRPS, Chronic Pain, FM, Depression & of course TOS. The TOSS foundation, www.tossociety.org was founded & dedicated to me by my hubby. I am learning so much more being here & dedicated to add pages of information in all relating conditions. Any suggestions welcome as I am a contributing honorary Board member for the BOARD Members & team.

Hi Cyndy,
I, too, am so grateful to have found Neurotalk. There truly is so much compassion, kindness, and education here. It is so wonderful to have this kind of understanding. So WELCOME.
I am so sorry you have TOS and RSD & FM. It's difficult to acknowledge what you don't know about. But the good news is, Social Security Disability acknowledges RSD as grounds for disability. Many have applied and were accepted. My Dr. wrote a brief note to DMV and I have a handicap sticker to hang in my car. It's wonderful when I get out, even if my hubby or daughter are driving, we can park close. There is information on this board about applying for social security disability. My Dr. acknowledges RSD & Fibro.
as disabiling. He has written letter for my handicap sticker and said he will support me in applying for disability, if I choose to apply.
Cyndy, RSDSA is a wonderful organization. If you go there, you can put in your zip code and find the local support group. Put in your zip code, and you see a phone number and name of closest group. They usually are aware of the local RSD, Fibro, Tos Drs. I attended there annual meeting here in Scottsdale this year. It was wonderful. About 135 attended the first day and Drs. therapists attended the 2nd day.
One site I found an immense amount of knowledge is rsdrx.com Dr. Hooshmand is now retired, but still has web site up. He is in Florida. Under Puzzles List is 146 puzzles or questions with his answers. I have learned a great deal from this site!!!
Welcome to neurotalk, it is a wonderful group of caring friends. Take care and jump in when you are ready. loretta soft hugs

[olecyn]

THANKS Loretta! I can't wait to check out the RSD organization in my area. My California attorney called me Monday saying "things have dramatically changed with SSDI. We cannot use RSD (?)" Geeze, now what kind of state judge will understand TOS is my BIG question? Hearing Nov 10th. He leaves me to get piles of patient records from my docs within a week so the judge has all the info ahead of time (like he's gonna read my 2 drawer file cabinet). He's had my case for what 3 years now? This means using my arms, the stress put upon us patients & then changes the 15% retainer fee signed document to 25% cause the SOCIAL SECURTY ADMIN passed a law in June stating attorneys can charge up tp 25% now. It just goes on. As the 3 cases come to fruition will I have peace to concentrate on just my medical care.

CalPers retirement disability case overwhelmingly ruled in my favor last year. Took CalPers 6 months to create the necessary paperwork & apply my ins. $20k to defend my retirement which is only a small monthly allowance & my medical ins which is why we fought for since I had no ins since 2004. All this when the university would not conform to my surgeons recommened physical limitations. Therefore I lost my job, my career. I have worked so hard all my life & go thru all this "ish" is insane for a true injured worker.

I realize everyone goes thru the same crappy standards. It plays much more physical, financial & emotional demands on the patient causing more pain. We are indebt 60K & have lost over 700k in wages the last 11 years. Not to mention the endless hours my husband has taken from his business & life driving to doc appointments, testing, AMEs, QMEs, attorneys, copying records, driving me everywhere since I need a caretaker to drive, lift & shop, laundry, everyday household chores. Isn't this a pain in the **** for not only the patient but the caregiver?

I appreciate the warm welcome here.

[CZZ74]

I realize everyone goes thru the same crappy standards. It plays much more physical, financial & emotional demands on the patient causing more pain. We are indebt 60K & have lost over 700k in wages the last 11 years. Not to mention the endless hours my husband has taken from his business & life driving to doc appointments, testing, AMEs, QMEs, attorneys, copying records, driving me everywhere since I need a caretaker to drive, lift & shop, laundry, everyday household chores. Isn't this a pain in the **** for not only the patient but the caregiver?

Cindy, its so nice to have you, and Im so glad you have found the site to be so helpful. me tooo. TOS is bad enough but with rsd, so sorry to hear about your pain.The paragraph you wrote above," I realize everone goes thru" is my life too with my husband. We too have gone through exactly the same things in the last 6 years... shocking isnt it!!! When I was first told I had rsd we bought the book, Living with RSD, my husband and I looked and it, read a few chapter and said this will never be us and we threw it away! Two years later we had to order the book again, it was us. I guess the joke was on us. Glad to have you, cz

[olecyn]

purchasing the book, throwing it our & reordering due to RSD, EEKS

You guys are so cool here! This is the busiest forum on NT. I am so glad I came over. HAPPY, HAPPY, JOY, JOY