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 09-05-2009, 09:23 PM #6
hope4thebest hope4thebest is offline
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Join Date: Jan 2009
Posts: 305
15 yr Member
hope4thebest hope4thebest is offline
Member
 
Join Date: Jan 2009
Posts: 305
15 yr Member
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HI Krank,
Welcome to the boards! You have found a site that has a caring, informative and supportive community and people with varying degrees of RSD

Your profile reads that you enjoy the outdoors!! I know this is a tough diagnosis to have, especially in the limb, when you'd rather be camping, hiking through the woods, and looking for a good fishing spot..I see you like to fish! I like to be in nature as well, hiking, exploring beaches...walking through the redwood trees..

I was diagnosed about a year ago, too, although I know I've had it for longer..mine is a work injury to the left/foot ankle with subsequent surgery (injury in August of '06, and surgery in February '08)..RSD made it's home in my left foot and lower limb, and is travelling over to my right lower limb..my walking is limited ! Needless to say I am under the 'authority' of W.C. but thankfully, I am able to realize their goal is financial, whereas my goal is optimal treatment and healing!! Result: conflict!!

I still work and take neurontin and have declined other meds (for as long as I can take it). (the reality is that I fear meds.........I am a self-confessed 'fraidy cat....) plus the side effects hit me hard..
My Pain Management doc wanted to 'install' a spinal cord stimulator very early on, and I declined that, too. She was not happy with my independent decision...She even made me feel somewhat guilty.. (oh well, it's my body..)
I did some homework and research and got the full story on SCS's. While it has helped many, it also comes with several risks, especialy with RSD. I suggest you scour this board and others for information, and then make an informed decision after you have completely educated your self. It IS your decision.

You write that you thought you were almost in remission! But then it started to creep back..what involved the turning point to where you felt the symptoms again? Was the physical therapy too aggressive? Were you overdoing it with your foot and walking, etc? See if you can remember the circumstances of when it came back!

I have found meditation and relaxation techniques to be INVALUABLE..especially those geared toward chronic pain...I had a terrible burn flare all night last night from over-doing it in aqua therapy yesterday, and I made it through because of those techniques..

Keep in touch,Krank ...wishing you some solutions that will help!!

Hope4thebest
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