For well over a year I have taken gabapentin first 300 and until 2weeks age 1200 mg 3 x day and I had a block in the front right under my collar bone with the last one causing excruciating pain all over my body and I had already had 6 from my lower spine all the way up to my neck with no relief from them either.. I went to see my PM Dr and they wanted me to try lyrica. Tapering me off the other I was feeling so much pain already I couldn't tell ya if it was good bad or indifferent. Yesterdays Dr visit she decreased gabapentin To 2 a day for 5 days and 1/2 for 5 days then stop. The lyrica 1 in the am and 3 at bedtime then increase to 150mg.. I know it has to get in my system but anyone know how long it takes. I am also on ms contin, percocet
, zoloft and zanax, the last 2 I've been on for over a year since I lost my oldest daughter in a car accident. According to the Dr 3 surgeries on my right foot and a hand injury plus chronic depression caused Mr RSD/CRPS to come settle in with me. The death of my child was bad enough.....and now this. It has been the absolute worst past year of my life. This pain is unbelievable not to mentioned my broken heart.. Entire right side and yep you got it it wasn't diagnosed until after 11 months. There's a special little window with this disease and if you don't catch it well I don't believe there's any going back. My stage of this I'm told is full blown and irreversible. The only thing not done to me is my last visit on Tuesday we dicussed a neurostimulator trial both in my neck then one later in my spine. Wow was my thoughts. This disease has taken over my life and not ONE DAY goes by that I'm not severe pain.....it gets really hard trying to cope with everything.

Saralee...please don't give up hope. And don't let the doctors take it from you either. I can't tell you if going with a stimulator (SCS) is the right decision for you because you are the only one that can make that decision. It's not for me and that decision has been made based on the risks associated with it and the high percentage of failure rates in RSD/CRPS patients. But there ARE other options and don't let the doctors tell you different and make you feel like you have no other choice.

Please see this thread that CRPSjames posted for you and another new member:

http://neurotalk.psychcentral.com/thread168953.html

And this one about tDCS:

http://neurotalk.psychcentral.com/thread168953.html

There's also ketamine out there as an option that has put many patients into remission. I don't know as much about it because it was far too expensive a treatment for me where as tDCS is very inexpensive and I can treat myself at home with no side effects and it is not invasive at all.

I'm not knocking SCS, as there are some people who are very happy with theirs, but I just want you to know that it is not the ONLY option out there. So when you are making decisions about whether to go ahead with a risky procedure, you should have the information about the other treatment options available.

Don't lose hope. If you read the tDCS thread started by ballerina I think you will be inspired by her journey with tDCS and the difference it has made in her life. Things CAN get better and don't you listen to any doc that says they won't. A year ago my family doctor who had been my doctor my whole life told me that I was just going to have to learn to live with the fact that I was stuck in a wheelchair. I left the office that day and never went back. I found a GOOD doctor who didn't give up on me and I am now walking and hope to never see that stupid wheelchair again. Don't let yourself give up...you have to keep fighting for your future without pain.

Originally Posted by ballerina
Hi Alt,

Please do your own extensive research regarding Spinal Cord Stimulators of any kind and CRPS.


*edit*
As with any treatment for CRPS, becoming educated is the best path to becoming a good advocate for yourself.

James, I have asked several times before not to be included on this list! I am having VERY successful results from both my cervical and thoracic stimulators. They had to change out the percutaneous leads for paddle leads in my thoracic SCS. This is not what I call a failure. To me, that "revision" was not a big deal, it was necessary and produces better results. I have NOT experienced spread because of them either.

I will not try tDCS, it's not for me. I cannot tolerate any of the medications or PT (or medication in the blocks any longer). SCS saved me! It gave me use of my hands and arm, so for now I continue to work because of SCS...that is success!!

Nanc

CRPSJames and/or ballerina (I am not sure who originated this list)
Please note that it is absolutely NOT OK to make lists and post them here about people's condition or their success or failure with any treatment
That is a complete violation of their privacy! and, as one member has already mentioned, possibly erroneous info!
If members want to post about their own treatment, that is fine, but you cannot make these lists and post them here

Hi Chemar,

I can't speak to a list today since I did not see it or post it. In the past I posted in response to a question on how to locate posts about spinal cord stimulator revisions, spreads and or failures. I did a cursory search, only back several months and only mentioned those who posted their responses in those exact categories. I did not think that someone's post on a public forum about their response to a treatment was private information, only that which was sent in a private message.

I only used the descriptions of the posters themselves with the reader being able to decide for themselves after reading someone's story that the risk of spread, etc. is worth it to them.

I know many posters have listed my posted comments regarding my own reaction to treatments in addition to listing my name to look up exactly what I experienced, including treatments that have had side effects. I was not asked permission first.

It would probably be helpful for all of us to know how to post and share this kind of information in a manner that encourages open discussion and self advocacy.

Thanks Chemar!

Ballerina, this is not exactly an accurate statement. On one of the occasions you listed names when someone asked the question of "has anyone had luck with st. jude stimulators?" My name was included in that list and I specifically asked you to not include me. I know I have seen my name on your list more than once.

Nanc