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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Hello (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/123267-hello.html)

cindi1965 05-31-2010 06:57 PM

I agree that this is the best group of RSDers on any message board out there....I am so thankful that I found it and I can come here and no one judges, they only help and lift you up as friends...:grouphug:

W E L C O M E!!!!!!

SandyRI 05-31-2010 07:13 PM

I ditto what Cindi just said..this place has been my savior for many months...make sure you get a really good lawyer. The very best of luck to you.

xoxox Sandy

hope4thebest 06-01-2010 12:13 AM

Hi Ruready
I'm sorry you have endured an injury and subsequent RSD as a firefighter, a job where you give your service to help others!
Welcome to the message board and to our 'family.' There are so many times I have been bolstered by the empathy and understanding from the great people on this site.
I injured myself at work..ankle foot injury and surgery resulted in RSD, which is now in my other leg/foot as well. I now use a mobility scooter for any extended walking..
Welcome RUready!
Hope4thebest :hug:

loretta 06-01-2010 01:03 AM

Quote:

Originally Posted by RUReady (Post 659784)
Thanks for the very nice welcome!I have gone through the so called "normal" treatments , SGB's x 20 or so , RFA-which left me with permanent horners ugghhh , all the different meds with mixed results . And am now in the lets try to control the pain mode . Currently taking hydrocodone 10/500 5 times daily , lodine , nexium , dilaudid for break through pain . Some days are struggles to get through and some are better (preaching to choir , right?) . I have been very fortunate with W/C as they have approved all treatments and different procedures with little difficulty . Ketamine seems not to be possible due to cardio problems . Sorry to ramble , just wanted to say Thanks!!!

Hi RUReady, I was just think about something that helped me greatly and prevented sensitivity issues a lot of RSDers have. They taught me this at physical therapy. Take 5-6 plastic bowls and put say coffee grounds in one, cotton balls, beans, sand, popcorn kernals. run your hands, feet thru them every day. It desensitizes your skin-sense of touch. even a bowl of different fabric textures. I believe, because of this, I'm not sensitive to touch, clothes. When my toes started curling up, my Dr. had me in the pool 86 degrees and counter curling them while swimming. In about 4 months my toes were touching the floor again. In 15 years, I am totally mobile except with one hand-it'slike a claw-delayed diagnosis and didn't get pt soon enough.
Before physical therapy, I found massage therapy helpful in warming up the muscles and got further in pt. I even got Blue Cross to agree to pay for massage therapy. A ortho surgeon wanted to break my frozen shoulder after 50 treatments. I called insurance and told them what he wanted to do, but I wanted to continue with pt and massage. they said they would be happy to pay for massage. I didn't know I had RSD for 4 years-so glad didn't have that ortho operate.
Take care, glad to have you. And sorry too for your injury at work doing a good service for 'us'. We all appreciate the work you do for us.
One of your friends,loretta

RUReady 06-01-2010 06:22 AM

Thank you for suggestions
 
Quote:

Originally Posted by loretta (Post 660253)
Hi RUReady, I was just think about something that helped me greatly and prevented sensitivity issues a lot of RSDers have. They taught me this at physical therapy. Take 5-6 plastic bowls and put say coffee grounds in one, cotton balls, beans, sand, popcorn kernals. run your hands, feet thru them every day. It desensitizes your skin-sense of touch. even a bowl of different fabric textures. I believe, because of this, I'm not sensitive to touch, clothes. When my toes started curling up, my Dr. had me in the pool 86 degrees and counter curling them while swimming. In about 4 months my toes were touching the floor again. In 15 years, I am totally mobile except with one hand-it'slike a claw-delayed diagnosis and didn't get pt soon enough.
Before physical therapy, I found massage therapy helpful in warming up the muscles and got further in pt. I even got Blue Cross to agree to pay for massage therapy. A ortho surgeon wanted to break my frozen shoulder after 50 treatments. I called insurance and told them what he wanted to do, but I wanted to continue with pt and massage. they said they would be happy to pay for massage. I didn't know I had RSD for 4 years-so glad didn't have that ortho operate.
Take care, glad to have you. And sorry too for your injury at work doing a good service for 'us'. We all appreciate the work you do for us.
One of your friends,loretta

Loretta , Thank you for the advice . Forgive my typing skills as they are not the best . The stimuli that is giving me the most trouble at this moment is my left leg , which is an area it spread to after aprox. 6 yrs. , the main problem I am having is with the hair on my leg . It is so like little barbs of wire and any stimuli hurts , they are so bad that they are shredding the sheets on the bed after a short time . I have since put a comforter on top of the sheets and it is holding out better but taking a beating and will need replacing soon . uggghh !!! I did the cornhusk machine for my arm when I was doing rehab and it seemed to help somewhat with my arm , however that has been years ago and I have not had any PT since. Do other folks do PT on a long term basis ? I haven't seen my PM doc in a while since I retired because it is such a hassle to make the trip. But he is just a phone call away , he has taken very good care of me and he helped me work a couple of additional yrs with treatments , meds etc till it got to the point I could not tolerate it. I have a pool at home , but the water is not as warm as you suggested . Do you have any links with the warm water recomendation ? I have mentioned it a couple of times but did not get much of a response . Thank you again for your time and responses . RUReady


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