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 03-22-2011, 05:17 PM #1
cadillacgirl70 cadillacgirl70 is offline
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cadillacgirl70 cadillacgirl70 is offline
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Hi all -

I have been on this board for a grand total of a week. You all have helped me tremendously. I guess I have been hoping that the diagnosis is wrong. I mean who wants this disease? I fell and fractured my wrist for goodness sake! Why does my whole arm and hand as well as my opposite hand burn so bad? Well, it must be time to leave the land of denial? I call the doc and am told that is why it is so important that we get this disease under control as quickly as possible. And that is why I am having the sgb's. I appreciate the smack in the head from my neuro. Sometimes a girl just needs to be heard. also mentioned that I am not sleeping and she upped my neurotonin dosage. People just DO NOT understand. They think I am whining and that includes my family - so I have stopped saying anything. Another reason I am thankful for all of you
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Old 03-22-2011, 06:36 PM #2
birchlake birchlake is offline
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birchlake birchlake is offline
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Keep checking back on this board; it is a tremendous resource for all.

As CRPS is a very "individual" condition, we'll provide lots of support and encouragement, but can only tell you what works for us. What works for you is what you need to discover. There can be a fairly long discovery period with this goofy problem!

Getting under this as quickly as possible gives you by far, the best potential for best results. I had my foot in a camwalker for 3 months before we discovered that mine was CRPS. That was not a good start! We all have our unique stories.

Personally, neurontin (gabapentin) is the cornerstone of my medications. It helps me tremendously. But again, what works for some may or may not work for the other. There is usually some experimentation needed with meds and then with their dosage titrations up and down. I was on percocet for a long time, but didn't like the dependency issue and so I weaned myself off that after about a year (that was not easy, nor fun!)

I have had a lot of trouble sleeping since my diagnosis. What works best for me is some trazadone an hour before bed. Not a lot, just enough to help me sleep. Sleep is so very important to handling chronic pain! Ask your doctor about what might be appropriate for helping you sleep. A reasonable nights sleep makes the next day seem much more tolerable.

Keep good records in a notebook or on your computer so you know where you've been with all of this.

Good luck!
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