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Member
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Join Date: Sep 2006
Posts: 292
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Member
Join Date: Sep 2006
Posts: 292
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My experience
I'd like to share some of my experiences with RSD, which I've had for 7 years.
For me, it started suddenly when my hand became swollen, turned dark purple, felt icy cold yet was sweating. The pain was in my arms - I don't remember the color or temp of my arms though.
I had off/on body sweats all day, all night. Sipping on a hot drink, such as herbal tea or warm lemon water gave me instant hot flashes as did any sort of exertion, such as bathing, getting dressed or turning over / changing position in bed.
By the time I got to the doctor that same day, the cyanosis & swelling disappeared, but not permanently. I'm glad you mentioned the transient color changes, because the AMA does not agree with this and it is what happened in my case. The AMA causes a lot of people grief as they say all 7 or 8 symptoms must me present at one time and continuous.
Blocks helped with the swelling and color changes to the point they were red or red with white dots instead of purple / cyanotic and temporarily warm.
Most of the time when I saw a doctor the color was pale pinkl which I attributed to adrenalin improving blood flow as after the doctor visits my hands would be cyanotic or if I'd had a block recently, they were red or red/white. Therefore, doctors rarely documented the cyanosis unless it was my primary treating doctor as I was comfortable there, so minus the adrenalin factor.
After 5 years, the color changes were rare; swelling was almost always present however.
Fast forward to surgery for an intrathecal pain pump implant. Clonidine was added to the pain medication which I'm sure is what helped decrease the hot flashes/sweats. It wore off with time...until the dose was increased. Hot drinks & exertion still caused /causes soaking sweats leading to chills & goosebumps.
The swelling has pretty much disappeared.
Now the cyanosis is positional, meaning if my arms hang down, my hands turn dark purple / cyanotic and icy cold. Up in my lap, my hands soon turn very pale & remain still cold.
My arms and hands are wasting but one is quite a bit smaller than the other which wasn't noticable prior to RSD. (I had exams for something else).
By the way, the pump has done a lot to relieve the hot, burning skin (pain).
This is just my experience. I have no explanation why my hands are only cyanotic when they hang down but I'd appreciate any thoughts.
 Hope
p.s.
I made this a size larger Vicc. I hope you can see it ok. 
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