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 02-10-2014, 01:50 AM #1
tullis tullis is offline
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I broke my arm December 9 2013 then to find out Jan I have RSD. So far I have had a gangland block (three weeks ago) with good relief of pain. I have am also on gabapentin twice a day. The RSD in in my right hand and I am getting function back but my hand feels like a dead. I also had a cortisone shot in my wrist, to hopefully get my index and two other fingers back to feeling normal. I am feeling blessed with the result so far I feel my doctor has addressed it very aggressively. My short term disability is giving me a hard time about being out of work I am not a person to sit around and wait. The RSD has taught me some patience . I guess my question to you all how long does it usually take to come back to a normal function? I use my hand all the time at work on a computer and I am stressing about not being able to work at 100%
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Old 02-10-2014, 02:30 PM #2
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Hi tullis!
Welcome to Neurotalk. So sorry you are having to deal with this monster. Are you scheduled to have any more stellate ganglion blocks? In my experience, if they are helping, you need more and you need to have them closer together...like one every week. How long does it take to get back to normal function? I am not a good one to answer that. I have had this for 23 years and I am worse than I ever was. I don't mean to scare you as this is just me. Your BEST chance of remission is early treatment. I was treated very aggressively with stellate ganglion blocks (SGB's), 1-2 per week, and with medication. I went into remission for many years.

Wishing you the best,
Nanc
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Old 02-10-2014, 07:29 PM #3
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So sorry you have to deal with this but am happy the doctors are treating it aggressively. I too ask if you are to have anymore blocks. I had 1 every day for 5 days then spread them out. plus pain meds to manage at home. Anything to get control of it and hope for remission.
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Old 02-10-2014, 08:10 PM #4
tullis tullis is offline
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Originally Posted by Nanc View Post
Hi tullis!
Welcome to Neurotalk. So sorry you are having to deal with this monster. Are you scheduled to have any more stellate ganglion blocks? In my experience, if they are helping, you need more and you need to have them closer together...like one every week. How long does it take to get back to normal function? I am not a good one to answer that. I have had this for 23 years and I am worse than I ever was. I don't mean to scare you as this is just me. Your BEST chance of remission is early treatment. I was treated very aggressively with stellate ganglion blocks (SGB's), 1-2 per week, and with medication. I went into remission for many years.

Wishing you the best,
Nanc
I am sooooo grateful for your quick response I am waiting to hear from the doctor about getting another ganglion block. I am hopping I will get the shot this week. Again THANK YOU. I did get my leave of absence extended so that does make me feel better.
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Old 02-10-2014, 08:18 PM #5
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Again thank you for your quick response, I am currently waiting got hear from the doctor about getting another gangling block I was wondering if anyone else is wearing a compress glove to keep the inflammation down. My fingers and hand have been so swollen since I broke my arm I can not bend the fingers to make a fist. I have had improvement but slow going. My thumb is working as well as my pinky but the other three fingers feel dead. The cortisone shot seemed to help in relieving some swelling in the hand but not the fingers. Does every else deal with inflammation ??????
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Old 02-11-2014, 06:21 PM #6
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Hi Tullis and welcome, though of course I'm sorry you have to be here.

Following the wrist surgery which was my precipitating event, my hand was extremely swollen and I could barely move my fingers at all. I know that sounds like an exaggeration but they really moved just a tiny bit that was barely discernible. I started physio straight away but there wasn't much we could do. If I remember correctly, it was mostly the physiotherapist gently massaging and moving my fingers (I say gently but it didn't feel so gentle). Once the swelling came down a bit, I started wearing a compression glove and as the swelling reduced further I moved to smaller gloves.

The swelling is much, much better now. My hand is still a bit swollen but I think that other people can really only see the swelling in my wrist. I can't say how much the compression glove helped because I was doing physiotherapy too.

One thing that is great about the compression glove is that the seams are on the outside. I am able to wear the glove without any discomfort. I still wear it under normal gloves because I wouldn't be able to tolerate a normal glove touching my skin.

I had a stellate ganglion block but got no relief from it. I also had a cortisone injection in my shoulder. It helped the swelling and I had an extremely dramatic, though very short-lived, increase in range of motion in my hand.

I still can't really make a fist but I'm almost there. I also work on a computer all day. My employer has made and continues to make any adjustments we can think of to make things easier for me. I am certainly slower than I was before CRPS but so far my employer has been very understanding.

Hang in there. I know it is a lot to try and wrap your head around. I don't think I've quite done that yet and my CRPS started in December 2012.

Kim
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Old 02-13-2014, 04:16 PM #7
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Hi Tullis,

My husband is currently in CRPS remission. He had two surgeries in 2009 to repair damage to his hand from an encounter with his table saw. Like you, he was diagnosed right away which I believe was key.

He had two SG blocks and one brachial plexus block (or maybe it was the other way around). At the time, he felt like none of them was much help so resolved not to have any more. At the same time he went to physical therapy three times a week and also did the same exercises every night at home without fail. I helped him with the exercises because I could push his range of motion further with my two hands than he could with his one good one. He took gabapentin four times a day which he said made his short-term memory non-existent.

He also soaked in Epsom salt for 20 minutes every night. This was not prescribed, but I got a lot of hits on the internet that this helped with swelling.

I can't say which of these remedies put him in remission. Maybe a combination of any or all of them. But I can tell you it wasn't easy. He worked very hard and the exercises were painful. His surgeries were in early September '09 and he told me once that he didn't remember being in much pain after about Thanksgiving. I didn't find that out until months later though because he hated me asking about his pain levels. He did his exercises till probably the middle of January before tapering off and finally stopping altogether.

I think he would probably tell you that using his hand even when it was painful was a big part of attaining his remission. He would also say that if you're getting good results with the nerve blocks, go with whatever's working for you. And stay aggressive.

Don't give up! Don't ever give up!

Best of luck!
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Old 02-13-2014, 04:28 PM #8
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I forgot to mention that he also wore a compression glove for swelling. Many of his PT exercises were geared toward improving the dexterity in his fingers. I would estimate he's only regained maybe 40% of that dexterity but that's due more to the nerve damage from the saw. His fingers and knuckles have retained a little of their swelling even to this day, but it's nothing compared to when he was experiencing so many classic CRPS symptoms.

I did hours and hours of research on the internet, looking for anything that might help with his swelling. One thing I found suggested taking NAC (N-Acetyl Cysteine) so we bought some of that (GNC probably carries it -- we bought ours at a natural food store) and he took that in addition to his gabapentin.

I even massaged his hand every night after his exercises, thinking that I was helping "push" the swelling out of his hand. I don't know if it helped or not, but it made me feel like I was in the fight with him.

Again, I would just encourage you to try anything you think might help and stick with the things that give you good results.

We're all rooting for you!
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