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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


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Old 08-03-2012, 01:29 PM   #1
Join Date: Aug 2012
Posts: 4
rayandillene HB User
Thumbs up rayillene

Hi there!
I am a mom of two teenage boys and have been diagnoised with RSD. I am already in the second stage. It started from a severe drug reaction from Cymbalta. I have a wonderful husband that works three jobs to keep our heads above water. I lost a 35k job and it really has taken a toll on us. With all the doctor appointments and things it has been VERY DISCOURAGING. I have had two Sympathetic nerve blocks that did not work, had radio frequency where they burn the nerve endings, no help. They want to do the Spinal Stimulator but I fear that it may not work either. Any ideas on that?

Have you had the spinal stimulator? Did it work?

This has taken a toll on my health I tell you it has been tough!

Any thoughts are appreciated! Thanks! rayillene

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Old 08-03-2012, 02:31 PM   #2
Join Date: Jan 2007
Location: Valdosta, GA, USA
Posts: 66
fluttersby HB Userfluttersby HB User
Re: rayillene

I am so sorry you are not finding relief. I had my very first block today and so far I have had quite a bit of relief but it feels like it's wearing off already. I go for another one in a week.

My doctor was talking to me yesterday about the blocks and then he said if the blocks don't work alot of people have good results with the SCS. I don't know. You have tried everything it seems. You would have a trial I am pretty sure.

I know there are far more experienced posters on here than I am. They will give you good advice, I am sure. For me, I don't think I will jump straight from blocks to the SCS.

Old 08-03-2012, 03:22 PM   #3
Join Date: Apr 2011
Location: UK
Posts: 257
Kev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB UserKev629 HB User
Re: rayillene

SCS is something evertone must decide for themselves after weighing the risks involved. 60% who have them inserted get RSD at the incision aites however some of them say they are still better off, others it has made thins so bad despite a successful trial they have had them taken out again. It doesn't stop after the initial op. If you have to have more because the leads have moved or a dead battery you run the risk with every operation

if you need more because the leads hve movd or a dead battery

Old 09-16-2012, 06:54 AM   #4
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Join Date: Sep 2012
Posts: 13
Izzabella HB UserIzzabella HB User
Smile Re: rayillene

Hi rayillene!! I read your post and it was like reading my life story.. I also have two boys.. And my husband works 7 days a week at 16 hr days.. I've been dealing with RSD for 4yrs and I've tried everything.. So now all that's left is the stimulator.. I don't want to be negetive.. But I get very frustrated when my family/friends tell me to be positive about the stim. Working.. They don't understand the device is designed to help with the pain.. Not erase it totally.. And often you still need pain meds with it.. It doesn't help with all the other effects of RSD.. I'm tired of surgeries and getting my hopes up Everytime before a procedure only to wake up and there's that pain again plus all the other stuff.. During this battle w/rsd I've also had a double mastectomy and five reconstruction surgeries.. So I'm really tired of surgery.. Do you ever feel like you have to keep positive for everyone else about getting the stimulator when really you feel they just don't get it.. My dr told me there's a big chance it won't work.. And even if it does in my situation it will be a very small improvement.. But it's worth a try I'm told.. I know we have no choice but to try all of our options.. But sometimes it's very hard to keep being set up for disappointment.. I hope your outcome with this is the answer and if you've already had it done I pray your having good results!! Good luck to you!!

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