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 04-09-2012, 04:50 PM #8
crpsisnofun crpsisnofun is offline
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Join Date: Apr 2012
Posts: 4
10 yr Member
crpsisnofun crpsisnofun is offline
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Join Date: Apr 2012
Posts: 4
10 yr Member
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Quote:
Originally Posted by Nanc View Post
So sorry to hear what you are going through, CRPS is a horrible monster to have to deal with! Everyone is different in what symptoms they suffer, but some are usually similar. For example, I do not have near the discoloration as many others do, but the pain...the pain is horrendous! Everyone is different in what treatments help them also.

The most important thing for you is early treatment. That will increase your chances of remission. The other very important thing that the others here mentioned is sleep. I always hated bedtime, because the pain was turned up then for some reason. I was very sleep deprived, which doesn't help emotionally to deal with this.

I was first diagnosed 20 years ago with it in my face and was treated aggressively with blocks and meds. I was in remission for 13 yrs before having a huge flare up in 2005. Then in 2009 I injured my hand and it came back with a vengeance. It mirrored over to my other hand, surgery on my shoulder caused a spread...then it spread to my left leg. I could not and still cannot tolerate most medication, ice, heat, TENS unit or PT. Because I couldn't get a correct diagnosis for a while with my hand, it spread and the blocks didn't help so much this go around. I had a lot of blocks, they didn't cause a spread for me. I had two spinal cord stimulators implanted in 2011, and they saved me! I have regained use of my hands, I can raise my arm now and my leg does not kill me as much riding/driving in the car. My pain is reduced greatly. My sleep is better, but not as good as it should be.

Like I said, everyone is different in what works for them.

I hope your dr will help you, if not then you need to move on to one that will. You need to advocate for yourself. I also hope you find relief soon!!

Nanc
Thanks for sharing Nanc! I appreciate your time and caring to respond. It seems that it complicates things that there is no commonality for everyone in symptoms or in treatment. I am happy to hear that you found what works for you. I can't wait to get to that point. I have had more bad days in the past two weeks than good. It almost is as if meds aren't helping at all now. It's nice to be able to hear from people like yourself that really do understand. BTW, I cannot imagine living with this for 20 years! You deserve some sorta of a metal of honor! I am not even at one year mark and I just can't see how I can do this much longer. Many thanks and lot's of well wishes to you!
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Nanc (04-10-2012)
 


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