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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 04-11-2013, 02:18 PM   #1
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Unhappy rsd and what its doing to our body

What do you think RSD is doing to your body ? I know for me personally that ive lost alot of muscle in my arms , legs , stomache , back it feels like no matter hoe much i exercise im going in the wrong direction . Also i dont know whats going on inside my body with my nerves , hormones , heart ,bone, i m scared that its not just the pain that i feel 24/7 everyday that theres so much more happening that i dont know . My memory is gone i cant remember alot of things that happen i dont know but does anyone think of this whats going on inside me snowman2

 
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Old 04-17-2013, 04:25 AM   #2
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Re: rsd and what its doing to our body

I think there are more symptoms than just pain as if that wasnt bad enough! My husband has muscle weakness and stiffness and trouble concentrating sometimes. The cold weather made is so much worse. There seems to be a flare up when the weather changes. The doc says something in the quick change in barometric pressure in the atmosphere makes it worse like when it is going to rain and the clouds move in. We had to move to a warmer climate which seems to help so much.

 
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Old 04-21-2013, 05:57 AM   #3
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Re: rsd and what its doing to our body

Wow that's really a big step moving to a warmer place I think this will be in our future but of course a lot of planning will be needed keep on touch snowman2

 
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Old 04-21-2013, 06:31 AM   #4
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Re: rsd and what its doing to our body

I too had to move from Ky to S. FL, due to the cold weather. I have a daughter & 3 granddaughters that I haven't seen in 2 years! The last one was born in Jan & I haven't held heryet! I have had this "BEAST" for 6 years now. I have been on most all of the narcotics, lidoderm patches,etc. I am now thinking very seriously about changing my PM Dr for many reasons to go into but the main one is that she hasn't performed any procedures on me. I have had 3 nerve blocks & a ganglion block before I moved down here. I am going to my PCP Dr & get my hormones checked cause these sweats are driving me crazy, along with the EXTREME pain, that wakes me up every 2-3 hours!
I wish you well & my prayers go out to ALL that have this. Just keep in mind that one day, we will not have this pain or sorrow! God Bless..

 
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Old 04-21-2013, 06:35 AM   #5
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Unhappy Re: rsd and what its doing to our body

I too had to move from Ky to S. FL, due to the cold weather. I have a daughter & 3 granddaughters that I haven't seen in 2 years! The last one was born in Jan & I haven't held heryet! I have had this "BEAST" for 6 years now. I have been on most all of the narcotics, lidoderm patches,etc. I am now thinking very seriously about changing my PM Dr for many reasons to go into but the main one is that she hasn't performed any procedures on me. I have had 3 nerve blocks & a ganglion block before I moved down here. I am going to my PCP Dr & get my hormones checked cause these sweats are driving me crazy, along with the EXTREME pain, that wakes me up every 2-3 hours!
I wish you well & my prayers go out to ALL that have this. Just keep in mind that one day, we will not have this pain or sorrow! God Bless..

 
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Old 04-23-2013, 12:50 AM   #6
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Re: rsd and what its doing to our body

One thing is I sweat a lot more but I think it's from all the opiet pain meds that are all that help for the pain , but I know RSD is doing things to me so I talk and learn I'm in so much pain I can't sleep I'm glad this sight is here take care and maybe one day ill be moving away from the snow I love so much snowman2

 
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Old 04-23-2013, 06:32 AM   #7
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Re: rsd and what its doing to our body

The sweating goes with this condition, unfortunately. I have also noticed that if you exercise, stress is the WORST cause this attacks our central nervous symptom. I have also noticed that whenever you switch meds, that can make it worse.
Hope this helps. I loved the snow too but when I got down here, the extreme hot weather is almost as bad. Talk about sweating then! WHEW! All you can do is just TRY to stay cool in the summer down here & the threat of hurricanes scares the life out of me! It starts in June-November! I just pray & hold my breath & TRY to keep 2 weeks worth of meds, just in case one comes, that is what they tell you but I just ABSOLUTELY CANNOT on some meds!
God Bless

 
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Old 04-23-2013, 06:37 AM   #8
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Re: rsd and what its doing to our body

The sweating goes with this condition, unfortunately. I have also noticed that if you exercise, stress is the WORST cause this attacks our central nervous symptom. I have also noticed that whenever you switch meds, that can make it worse.
Hope this helps. I loved the snow too but when I got down here, the extreme hot weather is almost as bad. Talk about sweating then! WHEW! All you can do is just TRY to stay cool in the summer down here & the threat of hurricanes scares the life out of me! It starts in June-November! I just pray & hold my breath & TRY to keep 2 weeks worth of meds, just in case one comes, that is what they tell you but I just ABSOLUTELY CANNOT on some meds!
God Bless

 
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Old 04-23-2013, 09:24 AM   #9
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Re: rsd and what its doing to our body

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Originally Posted by mb501 View Post
The sweating goes with this condition, unfortunately. I have also noticed that if you exercise, stress is the WORST cause this attacks our central nervous symptom. I have also noticed that whenever you switch meds, that can make it worse.
Hope this helps. I loved the snow too but when I got down here, the extreme hot weather is almost as bad. Talk about sweating then! WHEW! All you can do is just TRY to stay cool in the summer down here & the threat of hurricanes scares the life out of me! It starts in June-November! I just pray & hold my breath & TRY to keep 2 weeks worth of meds, just in case one comes, that is what they tell you but I just ABSOLUTELY CANNOT on some meds!
God Bless
I think your rite on the sweating I just saw a doctor and you know how everyone of them have there own opinion but ya I was saying that I sweat a lot and have body chills and she said that was the meds and now that I'm finally in a place after 2 years of trying meds she wants me to get of of them and do biofeed back and PT and exercise in this program that takes 17 days I don't know if I will survive 2 days or 2 hours they said it will be gradual and there will be a nurse and a doctor on hand to help me I have flareups that last 3 hours everyday and its like anything can set me off but this is all in preparation for the SCS they need to have me off the opieds that's all that works I thought I would get the stimulator and then maybe be able to cut back we will see I have my work cut out take care and keep sharing . And I didn't think of hurricanes it's hard enough to get my p/x filled I don't know what I would do if one had to wait out a storm snowman2

 
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Old 04-26-2013, 06:33 PM   #10
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Re: rsd and what its doing to our body

Hi snowman, I have been on meds for 6 years & I don't think I could go without them. I have had input from a Dr. that puts these stimulators in & the risks outway the possible good! First, my insurance wouldn't pay for the $25,000 procedure & then at my age (53), I would have to replace the batteries every year (another $1,000)!
Do research on this, also, there is a high risk of infection & a

 
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Old 05-07-2013, 07:12 PM   #11
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Quote:
Originally Posted by snowman2 View Post
What do you think RSD is doing to your body ? I know for me personally that ive lost alot of muscle in my arms , legs , stomache , back it feels like no matter hoe much i exercise im going in the wrong direction . Also i dont know whats going on inside my body with my nerves , hormones , heart ,bone, i m scared that its not just the pain that i feel 24/7 everyday that theres so much more happening that i dont know . My memory is gone i cant remember alot of things that happen i dont know but does anyone think of this whats going on inside me snowman2
I think rsd is changing pattern directly in the spinal cord. I had done lots of reading on it.....researchers liken it to a program in a computer, that keeps running and is permanently encoded in the spinal cord. I have been to one of the experts on RSD, Dr. Robert SCHWARTZMAN, in PA. Had KETAMINE infusions for 1 year and they definitively helped me. I THINK alot of the issues I have at ed from the medications we take to try and keep the "fire" of the pain under control. Perhaps one day soon our perfect treatment will come, keep the hope!

 
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Old 05-07-2013, 07:16 PM   #12
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Re: rsd and what its doing to our body

They now have rechargeable batteries! Of course the initial implant costs more.

 
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