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 04-13-2013, 01:51 AM #1
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Default Couple questions about RSD.

Hello everyone new here and have enjoyed reading your posts and getting informed. Just saw a new pain doc today and he thinks I may have RSD, I am going to be getting some type of nerve block next week to check diagnosis. With everything I've been reading is it to late?? I started having pain ten years ago the discoloration and sensitive to the touch all of it ten years ago. No real trauma to my arm or leg that I know of had an emergency hysterectomy ten years ago lost 2500ccs of blood and hemoglobin was a 4 after blood transfusions and everything was always told by doctors that my nerve pain was caused by the misfireing of my nervous system because of blood loss and today I feel like I may have some what of a chance to relieve this pain. I've got all sorts of medical issues and I'm 36 is there a chance that this nerve block will work? Can anyone tell me what I can expect? Thanks for listening and thanks for all the information you all have on your site
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Old 04-13-2013, 06:53 AM #2
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There is always a chance because we are all different and respond differently to different treatments. There are some people who do not respond to the blocks (at least not in terms of pain relief) no matter how early they get them. Generally...after the first 6 months the percentage of people who get relief from the blocks goes down DRAMATICALLY...but not to zero.

There are different kinds of nerve blocks and from what I have read on here there are many different procedures even for the same type of block. I know when I had my first block done it was a lumbar sympathetic block. I was sedated for it. it did not help with my pain but when the doctor came to check on me after the procedure you could see that my left leg/foot (where the RSD was) was a dark red color and warm. He said that this was a sign that the block was a "success"...meaning that everything went as it should have gone with the procedure. It never helped with the pain but one of my symptoms did practically go away (the one where my leg would turn ICE cold below my knee for no reason) and now only occurs with really bad flares.

The sad news is that because it has been so long...if you DON'T respond to the block that doesn't mean you don't have RSD. Actually...it never means that...but especially not after so long. Some docs do the block, don't get results, and then they say it's not RSD. That's not true and it could prevent you from getting proper treatment if the doctor thinks this way. I hope your doctor is not one of those and is merely looking for possible confirmation of the diagnosis which could make things easier with getting approvals from insurance companies.
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Old 04-13-2013, 08:30 AM #3
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Thank you! I am so afraid to have hope again. I really appreciate your answer! I guess before moving here I had become ok with living with the pain I've got. Now with this new doc I'm starting to hope again I have four kids that I've got to make sure I get up every morning for to imagine a day I could wake up with less pain I realize no pain is reaching and only hope to decrease it any amount to help with day to day life. Thank you again.
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Old 04-13-2013, 10:04 AM #4
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For me the blocks didn't work until 2years into and the dr. decided to try and do them every week for 3 weeks. (yes my foot also turned deep red, but it didn't improve the pain until they did the series of one a week)

I also would like to welcome you to neurotalk. This is a great place to be. We are just like an extended family, full of questions and life experiences. Feel free to ask questions or answer them.

Again Welcome.
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GOD help me be faithful in the midst of my suffering. Alt1268
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Old 04-13-2013, 12:34 PM #5
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Thank you! I had just gave in to the fact that I was going to be in pain for the rest of my life and now moving to another place new doctor and all of a sudden hope that I've not even thought of for the last ten years. I am really kind of excited to have this nerve block hoping it works. Does anyone know how long it'll take to notice a difference if there is going to be a difference at all? How long does the procedure take ? Any info would be great thanks !
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Old 04-14-2013, 02:18 AM #6
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From what I have read...you know very quickly if the block helped with the pain. Sometimes the relief is VERY short (maybe only a couple of hours) and sometimes it will last days, weeks, or even months. It may also be that the first one doesn't help much or at all...but if you do a series of them then you get relief and the relief lasts longer. Any sort of relief at all can be a very good sign.

Also be aware that some doctors will put you out for the procedure, some will keep you awake. Some will use fluoroscopy so they can pinpoint EXACTLY where they are putting the needle and other won't. If the first one "works" in that you see the foot turning deep red and getting warm but no relief, then it could be that the doc didn't get the exact right placement for the block and it's worth trying again and adjusting the location a bit.

Good luck and take care.
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Old 04-14-2013, 04:40 AM #7
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What type of block Guanethedine was first stated to be useless in a 1993 US paper and 7 further studies confirmed this before 2000 but in the UK I was given them in 2010. They were useless. First UK paper May 2012 yet some doctors are still using them
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Old 04-14-2013, 11:01 AM #8
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I had a series of blocks when I was first diagnosed 22 years ago, they helped me greatly. I had a new injury in 2009, but didn't get diagnosed correctly until a year later. I wanted the blocks again but at this point they did not help as much. Everyone is different in how they respond and when they are helpful. I would definitely do a series of them, one week apart, for them to be more effective. A lot of drs will do a series of six of them to really know if they will be helpful...hoping the relief increases and lasts with each block. Catra explained the blocks pretty well, you will know right away if they will help. I have had them with sedation and without, personally I prefer without sedation. It is a short period of discomfort for possible relief and you do not have to deal with the foggy feeling of sedation and an IV. I think majority of drs use fluoroscopy these days, which is good!

Sorry you are having to deal with this. I wish you all the best!
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