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 01-28-2010, 02:59 PM #1
edever34 edever34 is offline
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Default A Very Odd Question

I have S C S for about 2 yrs. Mine is a lamanectomy with battery in stomach. My battery site (stomach) never bothered me after site healed,untill about a week ago-I swear this RSD demon has attacked the site!!! Extreme sensitivity to touch ETC-ETC. My question is for anyone who has an SCS if you have ever experienced anything like this. The site has no redness,or swelling and I have no temp. Thanks to anyone who can answer me-Carol
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Old 01-28-2010, 03:12 PM #2
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Quote:
Originally Posted by edever34 View Post
I have S C S for about 2 yrs. Mine is a lamanectomy with battery in stomach. My battery site (stomach) never bothered me after site healed,untill about a week ago-I swear this RSD demon has attacked the site!!! Extreme sensitivity to touch ETC-ETC. My question is for anyone who has an SCS if you have ever experienced anything like this. The site has no redness,or swelling and I have no temp. Thanks to anyone who can answer me-Carol
Carol..
I have my SCS battery in my lower back left hip area..Since 9/08... It is not red or swollen .. I can touch it lightly without pain... unless someone taps me there or hit by a rail or door etc...it does hurt..for a while afterwords like pheontome pain... the wires leading up my back internally..make my back very tender, often I wonder if my RSD is in my back as well....cuz my back hurts a bunch... up the center of my back...I wonder if you may have had some movement of your battery or possibly the beginning of an infection at that site...I wouldn't wait too long for more negative signs.. possibly have a Dr. visit to mention it mostly because it was not a problem before...and they can eithe confirm your sucpesion or not..

Keep me posted and let me know how you are doing...

Hugz for luck... KS
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Old 01-28-2010, 04:24 PM #3
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I have PM DR. appt. in the morning-Like I said-No redness,swelling or temp-just RSD symptoms. My back where "paddle "is connected to spine has always remained uncomfortable,leads "wires" never bothered me after initially healed. I liked your "phantom" word,maybe that is what it is,but I can tell you for sure that I know RSD pain from ANY OTHER pain. Will keep you posted and thank you so much for your response-carol
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Old 01-28-2010, 11:04 PM #4
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This may give a different perspective for you. I do not have RSD (my 15 year old daughter does) but I have interstitial cystitis. It is kind of like RSD in the bladder. Same kind of pain accompanied with urinary frequency, urgency and retention. I have had a SCS since March 2006. My battery is in my right hip area. It is sore all the time. I can touch it lightly and be alright but if I bump it or sit in a hard chair and lean back on it - it hurts like crazy. It is extremely tender! Of course it is not red or swollen or anything but just seems to be "angry" all the time. If I hit it hard like running into something I will cry because it hurts so bad and it will stay sore for a few days after. Even with this the relief I get is amazing so it is worth dealing with the inconvenience to have some resemblance of my life back. Hope this helps!
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Old 01-29-2010, 09:17 PM #5
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I have two leads on my SCS- a laminectomy and a regular lead. My battery pack is in left hip. It's doing well now, but I have had quite a few revisions on it. A few years ago my hip started hurting like crazy, and they figured out that I had a few neuromas around the scar tissue. So the removed those. Then my hip started swelling up and hurting an insane amount. Turns out that my battery had moved and was pressing against my hip bone. Ick. Now my battery is in a dacron pouch. It's a synthetic material that the scar tissue grows into so nothing can wiggle around. And it's been really great for the past two years! At some point I want to get a smaller battery, but no one is quite sure how the dacron thing will work with a smaller battery. But it has worked well.

So my long drawn out point is that things can go wrong that are not RSD and can be fixed. Talk to your doctor about it. And my battery pack can go through periods where it is more sore. It can be a little worse on some days, and a lidocaine patch can help a lot with that sensitivity.

Hope this helps!
Lynn
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Old 02-01-2010, 06:01 PM #6
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Thank you. As I was on my way Fri, to Dr. appt. the office called to cancell my appt. Then I had some stomach bug and company all weekend,so have not been able to answer posts. I was wondering if this problem was indeed scar tissue and It feels a lot better today. -Carol
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Old 02-02-2010, 05:48 PM #7
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You might want to ask your doctor about the lidocaine patches, They're called Lidoderm.

He may have some samples....!

I use them on my low back and neck, where I have disc pain, and they work well. (I also use them on my forearms, and hand/wrist, if I must do a lot of typing, or playing guitar.)
I've never used a whole patch, I get about three, out of a whole one, when using them on my back/neck.

They only work where they're placed, so, they're not to take care of your entire body.

If there's nothing else wrong, I'd strongly suggest you "check em out"!

Be well!

Pete
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Old 02-02-2010, 09:32 PM #8
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Hey Pete-Thanks -I have the patches-Carol
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