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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Our Stories & Introductions (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/10725-stories-introductions.html)

rhonda hope 10-29-2012 12:31 PM

Hello im rhoda hope and i have rsd/crps in my right arm. The doctor has tried several treatments and is now considering a spinal cord stimulator. Has anyone else ever tried it and what was your results?
Thanks to any one who responds

CWilhite 10-30-2012 06:53 AM

Hi guys,

I've posted a few things on here but I thought I would post here as well. I'm Crystal and I've been battling RSD for the last two years. In 2010 I broke my ankle while at work, it was a silly injury and seemed minor in the beginning but looking back, my life has changed drastically. Since my injury I've 7 surgeries, one of them including a permanent implant for an SCS. Along with the surgeries, I have also had 7 Lower Lumbar Sympathetic Nerve Blocks in order to try and force my RSD to calm down or go into remission. Since my injury is surrounded by a Workman's Comp case, I've had to work around what they feel like is necessary treatment for me to receive. I feel like after two years, I still have many unanswered questions about what's going on with my body and I'm still undergoing changes with my RSD. I've already found so much wonderful information from reading your posts and I look forward to continuing learning and hopefully from what I've experienced I can help someone too!

alt1268 11-02-2012 05:54 PM

rhonda hope,

Sorry to hear you have rsd. But welcome to the group. I tried a stimulator and the trial did not work for me, but many people have had good results from it.

Quote:

Originally Posted by rhonda hope (Post 927002)
Hello im rhoda hope and i have rsd/crps in my right arm. The doctor has tried several treatments and is now considering a spinal cord stimulator. Has anyone else ever tried it and what was your results?
Thanks to any one who responds


alt1268 11-02-2012 05:58 PM

Welcome I hope you find the answers you are looking for. Here we learn from each other, so if you have tried something and it has worked or failed please share your experience.

I too deal with workers comp and know your frustration. It is a constient battle. Just hang in there. God as a plan for all of us.

Quote:

Originally Posted by CWilhite (Post 927187)
Hi guys,

I've posted a few things on here but I thought I would post here as well. I'm Crystal and I've been battling RSD for the last two years. In 2010 I broke my ankle while at work, it was a silly injury and seemed minor in the beginning but looking back, my life has changed drastically. Since my injury I've 7 surgeries, one of them including a permanent implant for an SCS. Along with the surgeries, I have also had 7 Lower Lumbar Sympathetic Nerve Blocks in order to try and force my RSD to calm down or go into remission. Since my injury is surrounded by a Workman's Comp case, I've had to work around what they feel like is necessary treatment for me to receive. I feel like after two years, I still have many unanswered questions about what's going on with my body and I'm still undergoing changes with my RSD. I've already found so much wonderful information from reading your posts and I look forward to continuing learning and hopefully from what I've experienced I can help someone too!


pg2005 11-02-2012 08:40 PM

Guess I better introduce myself. You can call me PG. I've had CRPS in my left leg for 8 years now. Things have only declined over that time. Been through the ringer with treatments. I declined a SCS several years ago, but have now decided I'm going to try it. Currently awaiting insurance approval.

alt1268 11-03-2012 03:23 PM

Welcome PG2005. Sorry you have been going through such pain the last 8 years. there is a scs site striclty for people who have or are getting scs. check them out.

Quote:

Originally Posted by pg2005 (Post 928214)
Guess I better introduce myself. You can call me PG. I've had CRPS in my left leg for 8 years now. Things have only declined over that time. Been through the ringer with treatments. I declined a SCS several years ago, but have now decided I'm going to try it. Currently awaiting insurance approval.


Mark56 11-04-2012 11:34 PM

Hi ALT.... Been a While!
 
Hi ALT, I am so glad to see you posting on new member introductions! What a profound ministry of sharing the blessing of care with folks! You are very active, and I am glad to find you here after missing you on the SCS subforum.

Hi Rhonda, CW and PG! There are answers to be learned from all perspectives of the approach to medicine and a possible alternative, if not as in my case substitute, to pill methodology to pain management. I have the Boston Scientific Spinal Cord Stim and have used it 24/7 now for well over two years, achieving full low lumbar and leg pain management with its electronic signature.

Numerous manufacturers offer alternative devices, and some even are used to inject medications directly into the body via a pain pump mechanism, many of which are addressed on the SCS and Pain Pump sub forum under medications and treatments found here-

http://neurotalk.psychcentral.com/forum118.html

Come on over and check us out by clicking the link to the master web directory of our threads! You will meet cool folks from all over and many paths of life who similarly seek answers to important questions while also keeping the eyes alert for a sense of HOPE.

You might even find us engaging from time to time in a virtual party or BBQ at Pooh's ranch in Nowhere up there near Somewhere Out There. We do have fun, and even are known to LAUGH.

Hoping to see you on the threads,
Mark56:grouphug:

Lorax3 11-05-2012 10:35 PM

Fibro & CRPS
 
Hi. I've been suffering from Fibro for something like 15 years or more. Three years ago, walking down the stairs, I got off balance (even though I was holding on) and went left as my left foot hit the last step. I sprained my ankle horribly...brought neighbor kids to the door with my screams. (embarrassing!)

The pain from my CRPS is getting unbearable. My insurance company is stupid. I finally got a wheelchair but no gel pad and sitting in it gets excruciating in my left hip. The pain's gone from my left ankle, up the leg into the hip. In the first year it's also affected my left arm but to a lesser extreme. It's now trying to go to my right leg.

I've been doing all the exercises I can to prevent if from moving. I used to use the Wii with my cane doing balance exercises but can no longer do that. I'm down to basic Yoga stretches. Meanwhile, I've gone back for physical therapy and the insurance company, again, keeps screwing up. I'm on an STS machine which they say they are having very good results with. But, it's a lot of visits and who wants to pay for that? They don't! And, I went 6 times, was supposed to get 6 more right away but they waited a whole month. I had to start over. They gave me the 6 again and I got 2 more visits lined up. The appeal will take a month. So, I have to extend my visits to only 1 a week and maybe pay for 2 more visits myself in hopes that I'll get more from the insurance. We are too poor for this.

Top all of that off (I didn't tell my whole story, that would take a book) my Father-in-law and brother-in-law on my husband's side of the family are dying. My x-sister-in-law is also dying. I didn't divorce her and she's been my very good friend for 31 years. Everyone is far away. I'm going to grit my teeth and go to my brother-in-law's memorial which should be soon since they expect him to pass very soon...waiting is awful. Then, I can also see my sister-in-law while we are south. I know it will wreck me for a good week or more but I have to be with them. I won't get to see my father-in-law, though. We just can't afford that. My hubby will get to see his dad one last time and I may have to sell some things for that but it's a must.

Sorry I wrote so much. *eek* I'm just looking for others who understand.
Thank you,
Jane AKA Lorax3

alt1268 11-06-2012 06:31 PM

Welcome to the forum. I am sorry you are going through such a bad time with so many family members passing away in such a short amount of time. I can't imagine. I had a ankle injury which lead to my rsd and now I have it in both ankles. Worse in the right.

I am glad though to have you here at Neurotalk especially on the rsd forum. Here we are like an extended family; learning from one another.

Feel free to ask questions, rant, rave, etc. We have all been through our good days and our bad. Again, welcome!

jpcrps 11-18-2012 05:39 AM

Hi new here
 
Sorry, I posted an intro message about myself but not sure if it went to general new members or to rsd group.

I am Jenny - aka jpcrps - am just at the one year anniversary of the foot surgery which caused dx of crps. Prior to that about 2 years dealing with grinding pain in 2nd MTP of 2nd left toe, mostly due to playing tennis.

I seem to be having spreads which began with prickly burning but have recently turned into full on burning pain in arms, hands, both feet (as opposed to just the left foot) and thighs.

I have participated in another online group and am looking for a supportive community without draconian admin personality issues. I also host a micro support group online, which was set up by my husband to support my need to connect with others who have this condition.

Looking for friendship, mutual support, kindness and understanding.

Mahalo,
Jenny


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