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)


advertisement
Reply
 
Thread Tools Display Modes
Old 04-10-2009, 09:43 AM #11
dennyfan dennyfan is offline
Member
 
Join Date: Sep 2008
Location: Oregon
Posts: 133
15 yr Member
dennyfan dennyfan is offline
Member
 
Join Date: Sep 2008
Location: Oregon
Posts: 133
15 yr Member
Default

Quote:
Originally Posted by dealingwithtos View Post
Hi Denny,

Thank you for your response. First off, you are absolutely not a wimp!

I also have 3 programs that are working all the time. I have 2 in my left arm and 1 in my right arm. Because of where the leads ended up, I do have chest wall stimulation too. So, that's kindof annoying sometimes.

For me, posture is huge. I mean huge. If I slump, I get a singe. Putting on socks and shoes is also a challenge when I've just charged - because I'm looking down and my spine isn't straight. I can go about 2 weeks before I need to charge. Probably because I'm down so low. When I'm in pain, I just slouch my back down and look down or to the left and I use that singe to take the pain away. So, you can use those to your advantage too... I absolutely feel that if it was in my legs, I would have different settings.

Can you tell me a little bit about your back? Do you have RSD in your back or do you have back problems? Was that a result of the SCS? Just wondering as I'm having those issues now.

Thank you.
Dealingwithtos,
Hi! Sorry I missed this until today. I didnt have problems with my back until SCS was implanted. Its bad now too. where the generator is was immediate. My back took longer. Then they redmaged a nerve in my neck that was damaged in a car accident in high school. At first there was just numbness & pain down my left arm. Then the RSD went there. My doctor did a nerve conduction study & found the damaged nerve & knew what he did. They think I had a blood clot sitting on that nerve after the trial. It was pretty much just a mess. I didnt have problems with my back at all until the SCS. I had a very pysical job before RSD came into my life. I am sorry you are having the same issues. It sounds like your SCS is was more positional than mine is. Mine doesnt change stimulation by moving quite as much as yours. I think I am lucky that way.
Hugs, Denny
dennyfan is offline   Reply With QuoteReply With Quote

advertisement
Old 04-13-2009, 05:50 AM #12
tjbird's Avatar
tjbird tjbird is offline
Junior Member
 
Join Date: Mar 2009
Location: Shenandoah Mountains of Va
Posts: 37
15 yr Member
tjbird tjbird is offline
Junior Member
tjbird's Avatar
 
Join Date: Mar 2009
Location: Shenandoah Mountains of Va
Posts: 37
15 yr Member
Default

Hey All I am starting to see a pattern here with the back pain after the SCS. I have it for my legs and my plates are at the top of my shoulder blades. My last visit I hit my pd with another symptom, my spine is on fire and it travels to the back of my neck and down my arms. My stimulater does change its intensity by movement and I have had to learn when I can use it and when I can't. I have osteoarthritis and I sleep in a recliner but I can't sleep with the SCS on because I have to run it so high and it changes with movement and I also have another problem if I sleep with it on. I have started total body bone pain in which I have beeen complaining about for 3 months now. When I have the bone pain (which they say is probably fibromyalgia) what ever it is I can't use my stimulater at all because it rattles my bones. I had the shrink thing and then I had a few symathetic nerve blocks, at that time we were treating the RSD, I also did the trial which got me down to almost no pain however I was on methadone too. I do love it when I am driving because that is such a painful thing to do without it. Mine is a Boston Scientific stimulator and I also did the trial test at the time it did a wonderful job and now they want to get me off some of the pain meds however the osteoporosis and osteoarthritis is so bad, plus the fibromyalgia they are now reevaluating the situaltion and since I got to reprogram my stemulater and learned the final part I can change programs myself. I don't know if you get a trial test but if you can it would be best. It took my insurance eight months to approve it because of the exspence. So Marleen read all you can and I don't know why they won't approve it it for type I, I personally have the caustalgia type. Keep asking questions and this is a good place for opinions and advice, just don't forget that everyone is different.
tjbird
tjbird is offline   Reply With QuoteReply With Quote
Old 04-13-2009, 10:30 AM #13
dennyfan dennyfan is offline
Member
 
Join Date: Sep 2008
Location: Oregon
Posts: 133
15 yr Member
dennyfan dennyfan is offline
Member
 
Join Date: Sep 2008
Location: Oregon
Posts: 133
15 yr Member
Default

Tjbird, I am suprised you use your SCS while you drive. I was told not to. I would love to but with the change in stimulation sometimes I dont dare. I too have Fibro. They diagnosed that before the RSD. Have tried having a program set just for nighttime on your SCS? I have a program that I keep really low that I use at night. I could never use the higher programs I use during the day at night while I sleep. They would make me crazy or is that crazier (lol)!!!
Have a good day!
Denny
dennyfan is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 01:33 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.