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 06-04-2010, 01:06 PM #1
mom of 3 mom of 3 is offline
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Default Need advise

I had a canopy fall on my right foot in Aug 09, I was diagnosed with RSD in Dec 09, I had a spinal cord stimulator placed in Feb 10, everything was feeling better until about 5 days ago I would wake up to muscle spasms in my left foot and leg and now its got the constant burning and my foot feels heavy color is still ok but Dr cant see me until Monday...going crazy because Im so scared.. could this be spreading and if so what do I do?
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Old 06-04-2010, 01:57 PM #2
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Default Hello!

We had our stims implanted on the same day, that's how I remember you so easily

I somewhat recall you saying something similar to this not long after your implant and I think your Rep was gonna reprogram and said something about your leads may be too high?
Did he reprogram at that time, and if so, did you get relief?

Is your stimulator turned 'on' during the night when the spasms wake you up?

Hopefully when you see your Dr on Monday, he'll say you just need reprogrammed again........

I'm sorry you are dealing with this! It can make for a LONG weekend while you wait for answers from Doc.

Caring,
Rae
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Old 06-04-2010, 02:02 PM #3
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Quote:
Originally Posted by mom of 3 View Post
I had a canopy fall on my right foot in Aug 09, I was diagnosed with RSD in Dec 09, I had a spinal cord stimulator placed in Feb 10, everything was feeling better until about 5 days ago I would wake up to muscle spasms in my left foot and leg and now its got the constant burning and my foot feels heavy color is still ok but Dr cant see me until Monday...going crazy because Im so scared.. could this be spreading and if so what do I do?
Dear Mom of 3...I ma so sorry that you are having such pain...It is real pain..we all get that here and you have come to the right place..Help is on its way..First..please do NOT USE ICE!!!! Try not to panic and be scared..as that will intensify your pain.. Try to take a warm bath and best you can, walk thru your pain until your can see your Dr...Yes, it is possible it has spread..it can..but try to stay positive cuz even if it has spread..you are with us..Have you tryed to elevate your pain with you SCS unit?? if it irritates your leg turn it off..possibly it is not wired for that leg because this is not your original site of injury... Please relax , you must try to..Know that we are here fo you to vent, cry and talk with...We have a great family and are very happy you have come to us..Read on as more of my friends will be talking with you soon, I am sure of it..

Keep us posted..

Gentle hugz...Kathy
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Old 06-04-2010, 06:37 PM #4
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Quote:
Originally Posted by mom of 3 View Post
I had a canopy fall on my right foot in Aug 09, I was diagnosed with RSD in Dec 09, I had a spinal cord stimulator placed in Feb 10, everything was feeling better until about 5 days ago I would wake up to muscle spasms in my left foot and leg and now its got the constant burning and my foot feels heavy color is still ok but Dr cant see me until Monday...going crazy because Im so scared.. could this be spreading and if so what do I do?
Hi Mom of 3, I am sorry you are having these symptoms. You really are fortunate to get early diagnosis. You have that best chance possible of getting another remission even if it is RSD in the other foot. There are medications for spasms, jerks, jolts, I used to have them and totally went away with medication. I had an awesome physical therapist also to keep me mobile. I was fortunate to start physical therapy immediately after my surgery induced RSD.
Some of the things that have helped me, is meditation, music, visualization, a wonderful psychichiatrist that is also a neurologist and pharmacologist. I'm actually better now than 6 years ago. Please hang on and Monday will be comforting. Something that has helped me more than pain meds is anxiety meds-lorazepam. After 15 years of this and going from one limb to full body and internal, I'm not on anything higher than vicodin. Swimming has been a blessing, keeping me mobile and limbs limber. Water temp needs to be 86 degrees.
Hope the best for you. This is a wonderful support group-so comforting and kind. RSDSA is the national organization that you can put in your zip code and find closest support group. We have a wonderful group here in Phoenix, AZ. Another informative website is rsdrx.com puzzles list Dr. Hooshmand practiced 40 years in Florida and left his website up. The puzzles is a list of 146 questions with the Drs. answers.
Please let us know how your appointment goes Monday. We care and want to be supportive. One of your new friends, loretta
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Old 06-05-2010, 12:19 AM #5
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Thank you everyone for replying, I started walking a little better tonight after taking vicodin and 800 mg Motrin, I keep my stimulator on even when sleeping the only down side to that is you can only sleep on your side, if I roll over I feel like I put my finger in a light socket...I hear so many horror stories about this disease spreading and people no longer able to walk and take care of themselves and it really scares me!! I did start walking 1-3 miles daily about 5 weeks ago I took a little over a week off and thats when the pain started again, my right foot is still ok I think because of the scs but I now have the burning pain in my left foot and ankle my foot feels really heavy and the spasms are only at night I guess when I relax.. I dont like the unknown just thinking what I already went through, I dont want to go through it again and put my family through it..thank you so much for listening to me after a while you start to feel very alone because my family and friends have no idea how bad this really is.
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Old 06-05-2010, 07:10 PM #6
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I have SCS and I only get spasms at nite. Do you have a Muscle spasm med? If not get one Monday from your Dr. I turn my SCS way down at nite,as I am a back sleeper. I will pray for your relief this weekend. Fondly-carol
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Old 06-07-2010, 08:44 PM #7
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feeling much better today, after talking to my Rep from Medtronics I found out I had my scs on the wrong setting.. everything is still new to me but I know I will get the hang of it. Thanks again everyone
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