Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 07-28-2009, 09:45 AM #3
CZZ74 CZZ74 is offline
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Join Date: Nov 2006
Location: Florida
Posts: 422
15 yr Member
CZZ74 CZZ74 is offline
Member
 
Join Date: Nov 2006
Location: Florida
Posts: 422
15 yr Member
Default Im full body too

Quote:
Originally Posted by SBOWLING View Post
Hello,

Take some really deep breaths and release the air slowly do this several times. It helps me relax even at night when I am having trouble sleeping. There is relief and your anxiety is normal. I have had RSD for 9 years the last 7 have been fullbody with lungs and heart involved. Mine spread quickly and it was very scary at first.

I love the pool. The cool water puts the burning out and the exercise is good for me. I water walk my lungs don't function like they should so I can't put my face in the water to swim. I then get in the warm pool at the Y and take an arthritis class this keep the joints working. I went to Dr. Schwartsman in Philly (an RSD specialist) he said the pool excercise is a must and he also agreed that my chiropractor (he an activator doctor he doesnt use his hands) is the best thing I can do for myself. All our nerves run through the spine keeping is aligned keeps the nervous system working better.
When the nerves in my mouth are flaired I drink room temperature liquids and eat yogurt. Ice cream is too cold for me and yogurt helps put the fire out.
I take Ativan for anxiety .5 mg twice a day this really helps. Anxiety is an agrivator for us RSD'ers

Now for the best thing is my treatment plan. I PRAY prayer has saved me from myself. The Bible tells of a a peace that passes all understanding. God will cover you with it when I finally gave my worries and doubts to him he lead me to the doctors who help treat me. I may never ever go into remission but I can manage my quality of life so much better because of him. If you are not a christian please contact someone you know that is or visit a church in your neighborhood. If you are a christian and have moved away from God's will for your life he never changes and is only a prayer away.
Take care,
Sherrie
Hi Im full body too I think it went to a new limb every three to 4 months and then to the pelvis , stomach and face. My ears are horribly affected. i have one spot onthe right side of my face that is not affected.
I agree with Sherrie's plan, swim and pray. a pool at the correct temperature 93 degreess can do so much in terms of relief. being weight less is wonderful.
The depression is still huge. I want to live alone. every action is a struggle- i have a husband who loves me and has stayed by my side through it all coma etc but I still want to live alone. Why because going through the motions of trying to be somewhat normal, socialable etc causes so much pain. I am jsut so tired of it all. Sorry I couldnt offer more cheer. I just keep praying and remembering to be thank ful. take care,cz
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