[Neko1221]

Just arrived home from my first lumbar sympathetic nerve block (I've had RSD for about a month now). It was a huge success in my opinion - about 70 - 80% pain reduction. I was so relieved that I sobbed like a baby!! I think I startled those around me. As soon as I started crying everyone kinda jumped into action asking what was wrong and if I was okay. I was snot-sobbing so hard it took me a few minutes to explain that they were tears of relief. I can even move my toes!!! Oh my Dear Lord, what a huge relief! I feel like I'm kinda waiting on pins and needles for the pain to return, since they dont know how long the block will last, but I'm trying very, very hard to distract myself! I have PT tomorrow - I cant wait to see the look on my PT's face when he sees how dramatic the change is! I know that many of you didnt get the much needed relief from the block, but for those that did; about how long did it last? And how should I approach PT? Should I really push it, or could that make the pain come back faster?? Thank you!

[catra121]

Congrats! This is fabulous news! I didn't have any luck with the blocks but it took a lot longer for me to get a diagnosis...oh how I wish they had diagnosed this earlier. But I am so so happy for you. From everything I have heard...aggressive PT is the best to get RSD to go into remission. That said...make sure you are safe. Injury is the surest way to bring the pain back with a vengence so while aggressive PT is the best bet you need to make sure that you aren't doing anything dangerous or getting too overzealous when it comes to doing activities. You get cocky and you get hurt (I speak from experience on this). So push as much as you can, continue the blocks as treatment, and take care. I am very very happy for you and fully understand your tears of relief.

[alt1268]

Nekko,

I am so glad your getting relief. How close together are your injections. My last serious of 1 week apart really helped me also. I hope yours is just as much success or better.

[nw31705]

Hi Neko, I'm so happy for you. I see you are another foot story. My RSD started in my right great toe and quickly started affecting the entires foot. This all occurred after a fall. I didn't start having symptoms of RSD until I had surgery to remove the bone spurs that had formed from the fall. Moving right alone I can truly relate to you I remember my first block I was on cloud 9 for about two weeks. My co-workers were wondering if I was on drugs because I was so happy. It had been so long since I had slept and I was practically pain free; I was in heaven. I had a lot of blocks that were successful, but with each time the amount of time they lasted grew shorter until the last time over a year ago I got little pain relief and that relief only lasted 3 days. I felt doomed; what was I going to do now. My RSD is spreading, but I also went undiagnosed for almost a year. I'm a fighter I still work some and I haven't given up. My best advice is not to take no for an answer and do not let anyone tell you your pain is not real. It is not all in your head that lighting and electric shock that you feel daily we all here feel it so we can't all be crazy. Good luck and I hope the blocks work for you since you have started early with them.

[ballerina]

I have not had blocks but have experienced the gradual return of pain. I have been wondering what the combination of blocks with tDCS could do to prolong the periods of pain relief, or take the place of blocks for people who either cannot have blocks or are worried about invasive procedures causing spreads. If anyone has tried tDCS with blocks please share your experience.

[Neko1221]

Well I'm now 6 days out from my first block and the pain/immobility is back. I am crushed. I was euphoric Monday, Tuesday and most of Wednesday - even though I was still in some pain, it was NOTHING compared to what it had been. But, Wednesday night my pain started to increase and I had lost the ability to move my toes again. I told myself to go to sleep and when I woke up it would be better again... it wasnt. It was worse! And each day since it has increased. Today I'm back to the orginal pre-block pain. I hate it! I dont want to accept it! I dont feel like I can accept that this is something I'll struggle with for the rest of my life! I just cant! I just dont know where to turn and what to do next! I have an appointment with the pain doc on Tuesday, and I assume he'll want to do another block - and I will, but I want more! I want this over with! I feel like I've lost it! I actually sit and yell at my foot. I tell it that its fine! There are so many options for possible RSD treatment, but I've found that most do not take medical insurance. I do not have the money, as much as I wish I could pay for Ketamine, or some of the other treatment I've read about, I cant! I'd rob a bank for it, but since Im either on crutches or in a wheelchair, I doubt Id make it out before the police show up - and since my husband is a police officer I doubt he'd appriciate me breaking the law. I just feel like I've reached a whole new low in desperation... I feel hopeless and broken... I feel lost. I dont know, sorry Im just ranting now! For those of you that have suffered from this years and still manage to survive - youre my heroes! I've only had it for coming up on three months and each day Im unsure how I'll even get out of bed!

[Nanc]

Originally Posted by Neko1221

Well I'm now 6 days out from my first block and the pain/immobility is back. I am crushed. I was euphoric Monday, Tuesday and most of Wednesday - even though I was still in some pain, it was NOTHING compared to what it had been. But, Wednesday night my pain started to increase and I had lost the ability to move my toes again. I told myself to go to sleep and when I woke up it would be better again... it wasnt. It was worse! And each day since it has increased. Today I'm back to the orginal pre-block pain. I hate it! I dont want to accept it! I dont feel like I can accept that this is something I'll struggle with for the rest of my life! I just cant! I just dont know where to turn and what to do next! I have an appointment with the pain doc on Tuesday, and I assume he'll want to do another block - and I will, but I want more! I want this over with! I feel like I've lost it! I actually sit and yell at my foot. I tell it that its fine! There are so many options for possible RSD treatment, but I've found that most do not take medical insurance. I do not have the money, as much as I wish I could pay for Ketamine, or some of the other treatment I've read about, I cant! I'd rob a bank for it, but since Im either on crutches or in a wheelchair, I doubt Id make it out before the police show up - and since my husband is a police officer I doubt he'd appriciate me breaking the law. I just feel like I've reached a whole new low in desperation... I feel hopeless and broken... I feel lost. I dont know, sorry Im just ranting now! For those of you that have suffered from this years and still manage to survive - youre my heroes! I've only had it for coming up on three months and each day Im unsure how I'll even get out of bed!

Hi Neko, so sorry for the pain you are experiencing and how you are feeling. I have had RSD for 20 years now. When I was first diagnosed with it in the right side of my face, the drs I saw treated it very aggressively. They did nerve blocks weekly and also treated me with medications. I went into remission for 13 years. The fact that you received several days of relief from you first block is great, and promising.
In 2009, I injured my right hand and it can back there and spread. I was misdiagnosed so it was at least a year before I received the first in a series of blocks, it was too late for them to help I ended up getting two spinal cord stimulaters, which have helped me greatly. I have regained the use of my hands and arm, which has allowed me to continue working.
I know how you are feeling. There are many times that if feel discouraged and like I am lost and alone, luckily I have a great husband...he is the only one in my life who really gets it. NeuroTalk has been a great find also, you will find some great advice and fantastic support here.
Don't give up on your treatment because early treatment is the key to it being successful.
Good luck to you!
Nanc

[catra121]

Originally Posted by Neko1221

Well I'm now 6 days out from my first block and the pain/immobility is back. I am crushed. I was euphoric Monday, Tuesday and most of Wednesday - even though I was still in some pain, it was NOTHING compared to what it had been. But, Wednesday night my pain started to increase and I had lost the ability to move my toes again. I told myself to go to sleep and when I woke up it would be better again... it wasnt. It was worse! And each day since it has increased. Today I'm back to the orginal pre-block pain. I hate it! I dont want to accept it! I dont feel like I can accept that this is something I'll struggle with for the rest of my life! I just cant! I just dont know where to turn and what to do next! I have an appointment with the pain doc on Tuesday, and I assume he'll want to do another block - and I will, but I want more! I want this over with! I feel like I've lost it! I actually sit and yell at my foot. I tell it that its fine! There are so many options for possible RSD treatment, but I've found that most do not take medical insurance. I do not have the money, as much as I wish I could pay for Ketamine, or some of the other treatment I've read about, I cant! I'd rob a bank for it, but since Im either on crutches or in a wheelchair, I doubt Id make it out before the police show up - and since my husband is a police officer I doubt he'd appriciate me breaking the law. I just feel like I've reached a whole new low in desperation... I feel hopeless and broken... I feel lost. I dont know, sorry Im just ranting now! For those of you that have suffered from this years and still manage to survive - youre my heroes! I've only had it for coming up on three months and each day Im unsure how I'll even get out of bed!

I am so sorry to hear that your pain has come back with a vengence. But please don't lose hope. You got several days of good relief and many only get a couple hours after their first block...so that should make you optimistic that you are early enough in this and that you DO respond to the blocks. Generally (if you respond to the blocks) if you do a series of them then the effects will last longer.

But blocks are only one piece of the puzzle. While you have the relief you need to do aggressive physical therapy...which means not just the outpatient physical therapy but also doing the exercises they give you for home...EVERY day throughout the day. I didn't get relief from the blocks (they actually caused my RSD to spread) but even without that sort of relief it was the physical therapy that really got the function back for me and got me out of the wheelchair. I still need to use a walker but at this point the main reason for that is that my balance is really bad since the spread (though it also allows me to put less weight on the ankle when the pain is at a high level). I find the walker much easier to use than the crutches and it has really given me a lot more freedom (the kind with 4 wheels and a seat).

Another good thing about physical therapy is that you might find some of the things they do at the outpatient center might give you additional relief. When I did outpatient physical therapy I discovered TENS and ultrasound which help me. The TENS is a godsend and when I spoke to my at home physical therapist last year (after the spread) she got me a portable TENS unit that I can wear while I walk and do therapy and it helps me a lot. I use the ultrasound heat therapy in the mornings after a hot bath and it seems to extend the period of relief I get (ie it takes longer for me to reach those 9-10 levels of pain).

I don't know where you live...but ballerina suggested to you on another thread that if you think you could travel that maybe you make an appointment at the clinic in Atlanta with Dr. Fugedy. If you are nervous about trying it on your own then this might be a good option. Here's a link to the website:

http://www.transcranialbrainstimulat...nt-stimulation

There are two sections on the website that I found really informative and I printed them out and took them to my doctor (who wrote the script for me to get the unit). One is about tdcs and chronic pain and the other is about tdcs and CRPS specifically. To get all the stuff for it cost about $300. Obviously if you have to travel to Atlanta and do a consult there then the cost will probably be more and I don't know how much insurance will cover (though that's definitely something you could discuss if you call the clinic).

Good luck...I know that there is no one and done sort of treatment for this. You generally need to do multiple therapies in combination to get it under control and possibly go into remission. Since you are still early into this then you just may go into remission so long as you stay actively involved in the treatments and do everything you can on your end to ensure follow up on the various therapies. Don't give up and don't become complacent thinking that there is nothing you can do and it just is what it is. If you cannot afford to go to Atlanta then I would recommend TRYING it on your own. It might take a little longer to figure it out (right protocol and electrode placement) but with no negative side effects all you have to lose is time (and very little money compared to other therapies).

Take care and good luck!

[alt1268]

Nekko,

Usually there needs to be a serious of blocks. I had one's that were 2-3 weeks apart with no long term results. This last one was one week apart and has now lasted 3 months. I still have some pain, but nothing like before. I was on a roll about and am now off of it and walking almost normal.