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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi, I just had to write you both and explain my situation. I was diagnosed with RSD in left knee down to foot 2/2012, though pain started in October 2011. It had already started to spread to right foot by then but docs blew that off and just concentrated on left leg. From knee down was freezing cold and hurt so much.. Couldn't have covers touch it, being outside in cold weather made worse. I was just miserable. I had one lumbar sympathetic block done that february which helped a lot, including starting lyrica which really helped with burning and allodynia. I tried get him do more blocks but he was stubborn and said since it helped why do more? From 3/2011 to 8/2011 my arms started hurting.. Can't figure out which one first because had surgery twice on right arm in may and July 2011.. Last one 3 months before RSD pain was noticed in my left knee. (I still wonder if right arm may of started it all because pain didn't go away but I had just had surgery! And except for surgeries failing to repair bicep tendon no one noticed any color changes, etc) anyways last year arms started to hurt so bad, weakness, burning in forearms, dropping things, mottling down both arms just like noticed left leg. By August last year I was using cane all time from RSD in left leg and my forearms and both hands on fire. I was able talk my pm doc into two more lumbar blocks by December but think too late by then, they didn't help with pain. I tried to get him do stellate ganglion block to help with upper body symptoms but was blown off there too.. My medical insurance ended in December.
So what I am trying say is YES RSD does spread. I am unsure exactly what started first arm or left leg. I do know my left hand is one that gets cold at times, when they are not burning hot and extreme red and swollen (which is all time!) I started sweating from forehead down right after RSD started and it has become worse.. What does it mean? I don't know, except did not have it before. People at church last night thought I was going to pass out the sweat was just dripping off me.. And I live in Alaska and 40 degrees outside, no reason to sweat like that!
Also what jewlz said is true, at least has been for me.. Keep moving, do not overdo it! I did aqua therapy in hydrotrac at my pt office for 8 months.. It was what kept me from locking up and pain getting worse. I could barely walk with my cane but could get in water and walk for 20 min and do other exercises for that whole hour that I wouldn't of even tried on "dry" ground. Since December when my insurance ended my left knee will not bend correctly, I can not straighten out leg all way and my muscles are wasting away. I have had to start at local swimming pool to do some of the stretches though it has been harder because water is colder and my leg already has circulation issues.. It's very painful. I also just started going to gym (once so far! been dreading it!) and walked slowly on treadmill. I had to hold onto bars for support and it killed my arms and hands but it helped get my leg moving a bit.. I do NOT want to end up in wheelchair! And I admit the walking I did on Saturday has put me down for two days (I also have lupus and am having flair too). I also do hand and arm exercise, even just couple mins at time..
Sorry if rambled and this is long post.. Yes, RSD spreads, and keep moving or will end up with contractures or in wheelchair but do not overdo it. Just little bit at time.
God bless,
Jennifer
[QUOTE="3kidz;5165519"]Hi, I just had to write you both and explain my situation. I was diagnosed with RSD in left knee down to foot 2/2012, though pain started in October 2011. It had already started to spread to right foot by then but docs blew that off and just concentrated on left leg. From knee down was freezing cold and hurt so much.. Couldn't have covers touch it, being outside in cold weather made worse. I was just miserable. I had one lumbar sympathetic block done that february which helped a lot, including starting lyrica which really helped with burning and allodynia. I tried get him do more blocks but he was stubborn and said since it helped why do more? From 3/2011 to 8/2011 my arms started hurting.. Can't figure out which one first because had surgery twice on right arm in may and July 2011.. Last one 3 months before RSD pain was noticed in my left knee. (I still wonder if right arm may of started it all because pain didn't go away but I had just had surgery! And except for surgeries failing to repair bicep tendon no one noticed any color changes, etc) anyways last year arms started to hurt so bad, weakness, burning in forearms, dropping things, mottling down both arms just like noticed left leg. By August last year I was using cane all time from RSD in left leg and my forearms and both hands on fire. I was able talk my pm doc into two more lumbar blocks by December but think too late by then, they didn't help with pain. I tried to get him do stellate ganglion block to help with upper body symptoms but was blown off there too.. My medical insurance ended in December.
So what I am trying say is YES RSD does spread. I am unsure exactly what started first arm or left leg. I do know my left hand is one that gets cold at times, when they are not burning hot and extreme red and swollen (which is all time!) I started sweating from forehead down right after RSD started and it has become worse.. What does it mean? I don't know, except did not have it before. People at church last night thought I was going to pass out the sweat was just dripping off me.. And I live in Alaska and 40 degrees outside, no reason to sweat like that!
Also what jewlz said is true, at least has been for me.. Keep moving, do not overdo it! I did aqua therapy in hydrotrac at my pt office for 8 months.. It was what kept me from locking up and pain getting worse. I could barely walk with my cane but could get in water and walk for 20 min and do other exercises for that whole hour that I wouldn't of even tried on "dry" ground. Since December when my insurance ended my left knee will not bend correctly, I can not straighten out leg all way and my muscles are wasting away. I have had to start at local swimming pool to do some of the stretches though it has been harder because water is colder and my leg already has circulation issues.. It's very painful. I also just started going to gym (once so far! been dreading it!) and walked slowly on treadmill. I had to hold onto bars for support and it killed my arms and hands but it helped get my leg moving a bit.. I do NOT want to end up in wheelchair! And I admit the walking I did on Saturday has put me down for two days (I also have lupus and am having flair too). I also do hand and arm exercise, even just couple mins at time..
Sorry if rambled and this is long post.. Yes, RSD spreads, and keep moving or will end up with contractures or in wheelchair but do not overdo it. Just little bit at time.
God bless,
Jennifer[/QUOTE]

Thanks Jennifer. I tried the hydrotherapy pool too but water is not hot enough. How did you stand it? Hot tub is perfect at 104 degrees





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