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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I was diagnosed with RSD a year ago. I've been taking Gabopentin now for 7 months. A low dose of 1200 mg a day used to be all I needed to control my burning and stabbing pain in my right foot..Today, I am taking 60 mg of Cymbalta a day and also 2400 mg of gabopentin a day. I was recently referred to a Chronic Pain doctor who wants to do a lumbar sympathetic Nerve block followed by a series of injections to offer pain relief..has anyone ever had success with these nerve blocks? Has any one had a spread of burning to other parts of the body as a result of these blocks? Is this really all I have to look forward to the rest of my life? I'm so lost as to what to do. I definitely don't want any more pain, but if it brings relief, I'm willing to try.
So sorry to hear of your diagnosis...it stinks!!! I have had three nerve blocks. The first one I did was WONDERFUL!!!! It lasted three months! That was the best three months since my diagnosis 10 months ago. The second nerve block, I had more pain than before I had the block. I had a lot of running to do that day so directly from having the block done, I had to go to the court house to file my exemptions for my house and stood in line for a LONG time!!! I contributed the pain to not resting. I had another block one week later. That one I went out to breakfast after having the block, then I went and to bed for a little while. When I woke up, I could barely move and was in pain now from my lower back down to my toes in my left foot. The RSD was in my ankle only, after the block, the pain in my back and entire leg has not gone away. I had the last block on Dec 17th, since Feb 27th, I now have the burning pain in my right foot. My PM doctor is wanting to do a Bier Block and I really don't know that I trust her to do another block of any kind! Plus I have heard that you don't put a needle where the RSD is at. With the Bier Block, your leg is elevated and they put a blood pressure cuff on your leg as tight as possible. After the blood drains from your leg, they inject Lidocain as well as another drug that works as anesthesia. They will leave you like that for about 25 minutes then slowly release the blood pressure cuff. It is supposed to help with the burning pain but again, from what I have read, it doesn't last that long. The thing with RSD, what works for one person may not work for others. It's a crazy disease for sure!!! My suggestion would be to try it. If it works for you and lasts for awhile, great. If it doesn't work for you, then I would say don't do another one! Unfortunately, there is nothing they can do that makes it last permanently. We just have to do what we can and just push through the pain so that we can try to allow ourselves some type of normalcy! I always tell people, this is my new normal!!! The key thing to this disease is that you have to try to keep moving!!! If you don't try to maintain your range of motion, you WILL lose it! Your muscles will begin to atrophy (lose muscle) and your foot can stay "stuck" how it is. I go for short walks with my husband...even though it hurts like heck to do it! There are stretching exercises that I do and I have a stationary bike that I use but put no resistance on the bike. Is there pain doing these things...absolutely! The pain though is worth it to me if I can keep my mobility!!! Stay positive and keep your faith!!! There are times when this will get you down and that's natural for all of us....just don't STAY down!!! Hope some of this information helps. Just remember....what works for one may not work for others and vice versa.
thanks! I'm really trying to stay positive through this whole thing..I've had three surgeries on my right foot and with each one, the pain and burning has gotten worse..I just don't want more burning and pain in my back..I would lose my mind..
Johnathan is right! When they talked about doing surgery on my ankle that has the RSD, the first thing they all agreed on is that they were going to do a nerve block within ten days of the surgery and do a block before starting the surgery. The reason for that is exactly what Johnathan said, to keep it from getting worse in that foot and spreading to another part of the body. Because my RSD has been in a major flare, the orthopedic said he wont even consider doing surgery on me right now because he said they would do more harm than good! He said he would make the RSD much worse than it is right now if he were to do the surgery. When they do the nerve block, they aren't going directly in the place where the RSD is at. Seriously, I would try the block and see how it works. I think if the burning pain keeps getting worse, I'm gonna end up breaking down and either getting the Bier block or doing another nerve block. Guess when you get in enough pain, you are willing to do just about anything!
I've had RSD since 1985, and have been in and out of remission quite a few times over the years. As I've gotten older and gone through a total of 5 surgeries (still need a total knee replacement, but have to get my weight back down first) the pain has become a full-time serious issue. I've been on countless medications over the years with various levels of pain control success. Currently I'm on 800mg Motrin 3x daily, 150 mg Lyrica 2x daily, and 30mg MS Contin (slow release morphine) 2-3x daily. The pain gets so bad that I have trouble falling asleep at night.

I finally ended up with a referral to an Anesthesiologist who does the block using a Fluoroscope to guide the injection placement. The first time I had the procedure it was helpful, and we did a series of 3 injections, 4 weeks apart. It really made a huge difference -- to the point that I rode my scooter into the 2nd appointment, and walked back to the car afterwards. After the series, I came in every 4-6 months and was able to keep the pain (and medication doses) down. I even went completely off of the morphine for a while. Another doc in her office did one of the blocks, and there was little to any improvement. My doc has also used some other type of medication during the procedure that wasn't as helpful, so we've gone back to the blocks.

As far as RSD spread due to a block, I really can't say. I have had a decrease in my overall health over the years, and added Fibromyalgia to my challenges. I've been dealing with major pain and difficutly using my right arm (the main reason I popped onto the board tonight) and am trying to figure out if I'm dealing with RSD spreading to my right arm.

Sorry if I wasn't terribly helpful, but I wanted to give you a short bit of what I've experienced, so you can see how others have responded.
I have heard they work well for some people but there are others like me who they have totally backfired on. Mine was in my right foot and after the block, I was in horrible pain from my back all the way down my leg. I lived on pain killers 24 hours a day which only took the edge off. This lasted for 6 weeks until it finally went back to where it started. It has now progressed up past my knee, but for me, I would never do another block. You would have to try one, maybe you will be one of the lucky ones that it works for. Good luck!
Hello ive had rsd/crps since 2011 and have done well over 40 SGNB,s and they do help infact it is the only thing that pushes the intense pain back for about 8 days . I have rsd in both sides left and right feet so i alternate the injections because they cant treat both sides at the same time so im always in pain trying to play catch up and dealing with this every day it gets old real quick but i guess im saying yes do them and see if it helps , there are 3 kinds of rsd if you have rsd in the central nervous system then they should help . Also these injections dont make the rsd spread im not sure what does but keep in touch im sorry to say this will be in your life there is no cure take care snowman2 p . s . keep yourself in a good place
Hi momoffour
My daughter had 2 nerve blocks and then the sympathetic nerve block which did stop the pain. The procedure was more involved than the nerve block but was worth it in the long run. It took a few weeks to work. Good luck!
Nanahelen
Sorry to hear of your pain. I have tried the sympathetic nerve blocks for my leg (3) as well as a ganglion nerve block in my neck (1) for my arm. So far, for me, I have had little to no relief. The lumbar injection wasn't too uncomfortable and I found the ganglion injection to be very uncomfortable. I think different things work for different people, but what do I know, much of this is new to me.
I am 19 years who has CRPS from age 10.
I have had synapthic lumbar nerve block at l2/l3 with steriod infiltration transforanial block. This treatment did not work for me at all. Pain increased
terribly for 5 days, unable to move position sitting, laying down & getting up from seat.... Spine felt paralysed but is not. Then pain reduced back to my usual crps pain.
I have not had any relief from any steroids or sympathetic lumbar nerve blocks or
infiltration. This Is because I had crps pain since age 10 and diagnosed with crps age 18.
There is no hope for me but maybe you will benefit from treatment. The sooner being diagnosed and treatment plan the more Likely you'll benefit from relief.
All, I was diagnosed with CRPS/RSD after dislocating my left ankle slipping in a puddle in a grocery store. Loads of fun. That was about 18 months ago. Gabapentin was useless. What has been the most successful has been the following: I've had two courses of plasma rich platelet therapy, and 5 tarsal tunnel channel blocks with the spinal ganglion blocks in my lumbar region.

The first PRP hurt so badly. However, toes I hadn't been able to move for 8 months started to move again in two days. The tarsal tunnel channel blocks work on healing the nerve damage which is believed to be some of the underlying issue within CRPS. The spinal ganglion blocks give me pain relief now for about 2 months. I still get pain, but the daily pain is down from the 8 range down to a 3/4. I feel like I can deal most days unless I'm doing A LOT (Christmas Eve I was cooking all day and I was in a lot of pain). I also got cleared to give skiing a whirl again after I worked through some exercises to strengthen my ankle.

Insurance does NOT cover the PRP. But it covers the other two which I will be doing every 3 months for the rest of my life. I think I'm in what is called "remission" right now. I'm hoping I can stay there by continuing this. I will always have the tingling. That doesn't bother me like the PAIN did.

These don't work like surgeries so don't think about them like surgeries that may cause RSD/CRPS. These are ultrasound guided injections. The PRP actually uses your own blood and a few additives and causes inflammation which is the trigger for your body to start the healing process again. I realize what is tricky about this illness is that each person is so different. Be open minded and try everything.
I placed this post in another thread, but thought I'd post some of it here, as well, in case it might help someone else to learn of another experience with a lumbar sympathetic blockade.

I have lower limb RSD/CRPS and I had a lumbar sympathetic block. The warming of the limb was immediate, along with redness and the sensation of sweating, but any relief I was supposed to receive from the block wore off within a day. Because of the immediate fail, no further blocks were recommended. (I love my Doctor)

It was a very unpleasant procedure for me and I experienced what can only described as "aftershocks" for quite some time afterward. I felt as if I was zapped by an electric prod :eek: at the injection site. It happened at random times and it didn't matter if I was upright or reclined. It was enough of a shocking sensation that it interrupted conversations and often awakened me, even after being exhausted from insomnia. I dealt with that for well over a year after a single blockade.

I won't say that the procedure made the RSD/CRPS worse, but it added a little extra dimension (just for kicks? :rolleyes:).

Just as others eluded to in an above posts, every response is different. And as the medical professionals have (hopefully) realized ... RSD/CRPS is anything but typical, predictable or one size fits all. I have read elsewhere that others have had good responses to sympathetic blockades, but those responses were after a quick(er) diagnosis of RSD - within the first few months after injury/symptoms.





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