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 08-07-2014, 02:55 PM #11
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This is such a personal decision. My CRPS started when I was 25...it's been 5 years since then. I don't take any meds for the pain now...use things like TENS unit, tDCS, ultrasound heat therapy, hot baths with Epsom salts, etc to manage the pain. I work retail so I am on my feet all day and work 45-60 hours a week. I do need to use a walker...it helps with the pain relief, my balance, and gives me a place to sit whenever I need it.

For me...SCS is not an option I would consider. There is just too much risk involved. I experienced spread after a LSB and the pain went from just my left ankle through almost my whole body...my right leg and head are the only places spared (and it's not internal either). Invasive procedures...even mild ones like injections were then out for me (my decision...not the doctors).

I think you just need to make sure you understand all the risks and that you are prepared to accept the worst if it comes to that. For some...it is worth the risk. Some people experience great relief from the SCS...others get much worse. This is not a decision to be made out of desperation...it can have far too great an impact on your life for you to have any regrets about it later. I can't give a recommendation on what is best for you...we all have to make our own treatment decisions...just make sure you take the time to think it through and make a decision about what is best for YOU in the long run.

Take care and I hope you find some relief soon.
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Old 08-07-2014, 04:59 PM #12
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SCS only work for 3 years and then you are back to square one. View http://m.youtube.com/#/watch?v=6_Nzh...feature=relmfu for updates on treatments, a clip provided by RSDSA.

Also read this and ask yourself how much you like to gamble.
http://painsandiego.com/2014/08/06/s...verse-effects/
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Old 08-11-2014, 12:37 AM #13
Lottie Lottie is offline
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Hello Little Kingdom and welcome! So sorry you are suffering. You have come to the right place, lots of good people here. I won't duplicate what others have said, they have all shared useful insights. For me personally, I chose not to get a SCS. You are doing good stuff to take care of yourself - clean eating, no alcohol, staying active via yoga and working. Great job! Is it your goal to stay off pain meds?? As others have mentioned, you do have options - you're on low dose gaba, if it helps you then consider asking your doc to double the dose to 1200 mg daily. I don't know the region of your pain, but lidoderm patches can be helfpul. Warm epsom salt baths, gentle physical therapy , swimming in warm water, meditation. Tramadol. In my humble opinion , a SCS would be way down on MY list of things to try.
Wishing you wellness,
Lottie
__________________
1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 08-14-2014, 07:41 AM #14
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I also have a SCS and have had it for about 4 years now. I also do take 3 other medications to help with the pain. I have a couple comments.
1. Everyone is different. You could have a very good experience with a SCS. Someone just wrote that they are only good for 3 years and then you're back to square 1. No, not necessarily. That's just one experience. There are many out there and there are positive experiences too. Not just negative.
2. Explore all options. Try other meds in conjunction with the gabapentin. Lyrica, Cymbalta, orphenadrine, venlafaxine, the list goes on and on. Many different options out there with varying side affects.
3. Get a second opinion. Get a third opinion if needed.
4. There isn't a cure-all out there. It's finding what works for you but also to remember that nothing will take away all of the pain.

I've had a very good experience with a SCS. I also work full-time, corporate environment and am successful. I do know that I wouldn't be able to function without it.

Good luck on finding what works for you. Patience is hard but it's worth it to stay working and moving.
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