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 01-12-2014, 11:37 PM #11
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Hi Chaos, I just wanted you to know that I was thinking of you and hope that your doing okay. My thoughts and prayers are with you.
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Old 01-13-2014, 04:11 AM #12
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Hey chaos, sorry I didn't check on you earlier, mad weekend...

How did the pain pump fitting go? Hope you're not too uncomfortable with it so far, and I'm crossing my fingers that it gives you some long-lasting relief.

Take it easy at the moment and good luck with it!

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

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Old 01-13-2014, 12:42 PM #13
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I'm finally back sitting at my computer. Things went really, really well. The Prialt is wonderful (for me, so far). I'm getting .25mcg throughout the day, and two bouleses (sp?) of .25mcg, one at 6am and one at 6pm. The allodynia in my feet is soooo much better. It's just a little bit of buzzing at this point, more if I'm colder.

The pain from the surgery was bad over the first couple days. I spent two nights in the hospital, I asked to stay the extra night because I didn't feel it was good for me to go home yet, my blood pressure was a little low the first night. The pain I have now is from the pump rubbing against the muscle. It'll form scar tissue so I don't have to feel that later.

I've been able to stand, in one place, without rocking back and forth, without needing to find a chair right away.

The incision site is itchy at this point, which I'm sure is good. It's sensitive, but not more than it should be, I don't think the RSD has spread at all. The incision in my back hurt as I would expect. I'm just swollen right now. I feel like i have a robot baby I'm carrying around. My pants don't fit. I'm wearing some spanks instead of the girdle they gave me at the hospital. It's super tight, but keeps things in place well so it doesn't move around.

The biggest worry I'll have is memory. A lot of people have complained about that. I've talked to the doc about it and we're going to increase my Prialt slowly to try to avoid this. Because if this doesn't work, I'm not going to be able to work at my job much longer.
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Old 01-13-2014, 02:11 PM #14
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I'm so pleased that things are going well with the pump so far chaos good for you....must be wonderful to have some easing of the pain and be able to feel the difference in what you can do. I hope this is a long-term effect for you, and you can get back some of the life you want.

It's always lovely when someone has a good day

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 01-14-2014, 09:22 PM #15
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Quote:
Originally Posted by chaos View Post
Less than 24 hours! I think I started getting nervous last night. I just keep telling myself it'll all be okay.
Keep us posted..Good luck and prayers sent your way..
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Old 01-14-2014, 10:32 PM #16
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Great to hear from you. So glad it went well! I don't know much about these devices.......is the pump in your back? Does the med go into your spine or your vein?? I can't imagine the feeling of being in a comfortable state,.... I hope its a great solution for you! Best ~ Lottie
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1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 01-15-2014, 11:30 AM #17
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The pump is in my abdomen. Between my ribs and hips on the right side. I thought it would be flatter but it's kind of tilted so it doesn't hit my ribs when I sit. The catheter goes from my belly, then through my skin around my hip to my spine. I can see the bruise from the line. I thought somebody drew on me at first and then I realized the line was there and not through my body. The catheter is put in my spine, kind of lower maybe 4 vertebrae above the pelvis. There is a cut on the front that is 2.5" long, and then a smaller one on my back.

Overall things are doing well. I overdid it a little at work yesterday when I sat up a couple inches to look at something, then leaned back, and did that too often looking at a spreadsheet. I didn't take any percocet yesterday, but did get home and used my MMJ. I'm suffering a little, but was physically addicted to Percocet a couple years ago and I'm not wanting that to happen again. I'm swollen as expected.

The doc reset the device on Monday to give me more throughout the day and then 6 extra bouleses if I want. When she gave me the extra dose at the office I went home and fell right asleep. But I haven't been too tired during the day. That's the biggest side effect I've noticed, is just getting tired for a small amount of time, not fatigue throughout the day.

I've noticed with the spinal cord stimulators that people are saying they can't bend and twist. I asked my doc about that and she said I should be able to as I feel like it. She secured the line down really well. I've been taking it super easy when it comes to that, but I guess the attachment with the pain pump is different or easier.
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Old 01-15-2014, 10:47 PM #18
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Good to know, thanks for the explanation! I pray it brings you some relief. You are doing so well, back to work is impressive.
__________________
1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 01-16-2014, 08:44 AM #19
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Hi Chaos, Sorry I'm late on this, but I really am pulling for you that this all goes perfectly for you and that you never experience pain above a two again! Here's to a speedy recovery hon!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 01-16-2014, 07:51 PM #20
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Hey Chaos. I've had 3 nerve blocks and a temporary nerve stimulator. I have RSD in my right foot. The leads moved all around and it hurt my back where the lead went in. It was not comfortable and I could only lay a certain way to get it to work. The trial was no fun for 3 days. Can't decide if I should try it or not??? I am curious to see how you do when healed. I sure wish you the Best!!!
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