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 08-17-2015, 12:00 PM #31
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Yesterday I managed to walk through 4 stores pushing a carriage. And yes it hit me hard later in the day. I fell into a coma at 5pm from exhaustion. Today I had cold burning pain on my right calf, but I am not giving in to it.
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Old 09-01-2015, 07:07 AM #32
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On Sat. and Mon. I was lucky enough to use my friend's pool. I walked and marched in it for over an hour both days. I even walked backwards! It was a joy to walk normally, with minimal pain. I kept to the shallow end for more weightbearing benefit.
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Old 09-17-2015, 11:37 AM #33
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Teeth Roller Blading!!

Okay, I know I haven't been on here for a while. I needed to step back and focus on other things besides my son's CRPS and let my heart do some healing. But I just have to tell you all this. About a week ago, he discovered that he can rollerblade and tolerate it pretty well for about a half hour or so at a time. This is HUGE! There's something about the heel-to-toe motion of walking that triggers pain on top of his foot. That motion is avoided in blading. Perhaps that are is where the nerve damage is, I don't know. The doctors can't figure it out because CRPS is not usually a pinpointed area like that. Ultrasound showed nothing abnormal along the nerves.

This break-through came shortly after his ortho surgeon said that if he doesn't start bulking up muscle soon, it's going to become permanently weaker than the other leg. This really gives him a great opportunity to strengthen that calf, ankle and foot. I'm so excited. I bawled for joy the first several times he rollerbladed. I've never cried so much in one year in my life.
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Old 09-20-2015, 06:33 PM #34
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Quote:
Originally Posted by swimtime View Post
Okay, I know I haven't been on here for a while. I needed to step back and focus on other things besides my son's CRPS and let my heart do some healing. But I just have to tell you all this. About a week ago, he discovered that he can rollerblade and tolerate it pretty well for about a half hour or so at a time. This is HUGE! There's something about the heel-to-toe motion of walking that triggers pain on top of his foot. That motion is avoided in blading. Perhaps that are is where the nerve damage is, I don't know. The doctors can't figure it out because CRPS is not usually a pinpointed area like that. Ultrasound showed nothing abnormal along the nerves.

This break-through came shortly after his ortho surgeon said that if he doesn't start bulking up muscle soon, it's going to become permanently weaker than the other leg. This really gives him a great opportunity to strengthen that calf, ankle and foot. I'm so excited. I bawled for joy the first several times he rollerbladed. I've never cried so much in one year in my life.
I'm so very happy for your son and for you as him mom!! CRPS I believe takes everyone involved on emotional roller coasters. I'm so glad that this is a high!!

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Old 10-13-2015, 08:36 PM #35
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Been too long since we had success post!

I have noticed in the last few days that I can leave my foot down while practicing piano. Previously I would cross my leg in the 'figure 4 position' so my ankle was resting on the opposite knee. Otherwise it would sting and go purply.

Lately I have been so focused on what I'm doing with my hands that I wouldn't realize till later that I had my foot down the whole time! I have looked at it to check in and it has looked pretty good!

Don't know if this will last or is new normal but it sure is nice. I think the ketamine/scar treatment combo is helping but I also think having something other than my foot that requires intense concentration is helping retrain some of my "footcentric" perspective.
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Old 10-21-2015, 12:16 AM #36
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Hello y'all. I'm fairly new to all of this being diagnosed at the end of August. I do suffer with nerve pain in my foot and parts throughout my body. My foot still swells and hurts where I had surgery on top of some other issues I complain of
All of y'all make me look like my issues are very minimal to what y'all are dealing with and I feel guilty about complaining. I can still walk short distances. Most night I don't have sleep problems. My nerve pain thanks to meds and ketamine and nerve block. Are not as bad. But my heart goes to each and everyone of y'all. If I ever do get to the stages some of y'all are in. I will hold my head high and push forward just because of y'all courage. Thank y'all and God bless


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Old 12-22-2015, 01:58 PM #37
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Been a long time in between success stories so I figured I'd post one.

Around 3 Christmases ago I rewarded myself for making progress and went to my first movie post RSD diagnosis. Sure I had to sit in the very back row so I didn't distract anyone else with my constant shuffling around and foot tapping, along with the sweat pouring off my affected limb onto the floor. And the movie wasn't that great either. (World War Z. I somehow didn't know it was going to be a zombie movie going in.) But as painful as it was, it was liberating!

Next week I am going to see my first movie since that time, symptom free!
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Old 12-22-2015, 07:33 PM #38
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OMG, symptom free movies! That is a success.

Today, I joined a group of friends for a 2 hour holiday lunch at a restaurant with minimal discomfort and very little foot propping. There was quite a bit of laughter and cutting up. Last year I went to a neighbor's house for dinner and was near whimpering the whole time. What a difference!

After Christmas we are going to see the Blue Men. Yeah silliness! This will be at a venue for 2500 with walking and standing in line. I am confident that I will be okay. Even if I have some payback, it ain't what it used to be.
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Old 01-18-2016, 10:10 PM #39
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My son's surgery to remove the 10 pieces of hardware in his ankle was a little over two months ago. He wanted it out for a long time, even after the doctor told him it could make him worse, because the hardware caused a grinding pain when he moved his foot, particularly side to side. His foot also made a lot of popping and cracking noises with every movement. Now with the hardware out, the grinding side to side pain is GONE! as well as the cracking and popping. Once he gets past the setback caused by the actual surgery, I'm confident he'll have a much fuller recovery! Also we installed a home therapy pool to make it easier for him to rehab, which is pretty fun!
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Old 01-27-2016, 10:08 AM #40
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Not so much a personal success story as a applause for the nurses who helped me get through the after effects of my cerebral angiogram. They did everything to make me comfortable-one nurse catered to me all night to get me through the agonizing pain I was in.
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