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 11-08-2008, 05:12 PM #6
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allentgamer allentgamer is offline
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allentgamer allentgamer is offline
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Join Date: Sep 2006
Location: Toon Town USA
Posts: 1,023
15 yr Member
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What a road we travel. Rsd has been a REAL trip!

I got the RSD way back in 2000, and worked about one year more. It wasnt that I wanted to stop working, I was forced out because of low job performance. It was then that it was dawning on me that life as I knew it to be was radically different from what it was before RSD.

Took them almost 4 years to quit saying it was in my head, and then bomb me with the RSD information. I really wanted to run from that revelation, but I couldnt run anymore

It all started in my right leg, and has now spread into my right arm and shoulder. The hips have really started hurtin the last few months, even to the point where I cant lay on my sides. Used to have some serious pain in the ankle that now is the entire leg.

I think the scariest thing is when they told me that it is effecting the central nervous system. Because of this my blood pressure is sky high, and even with 3 different BP meds it still runs high.

Pain is still the main factor in every day. At one time I was on lots of different pain meds that worked to bring the pain down some. But left me in fog all the time. Topamax worked for a while too until my hair started falling out, and it became increasingly hard to pee.

So today 3 BP meds, lipitor, and norco for pain is all I take everyday. Only one or two norco works to bring the pain to a tolerable level per day. At least I have some of my brain activity back LOL.

I have to use a cane most of the time, and for the loong walks I use a power chair. It seems to me the weakness is always getting worse not better. Although the weakness is getting worse, at least it is gradually happening.

One thing I would recommend is that anyone that has RSD get their bone density checked. When they checked mine the first time it was low normal. This was about 4 years into the RSD. They checked it again a year later and they said now it is osteopenia. This has also been getting gradually worse as time goes by. The doctor says it goes hand in hand with the RSD.

Sorry I didnt stick to the format, didnt have time to answer that way. Hope everyone is doin well as can be expected, and has a great holiday season!
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