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 09-07-2010, 07:26 PM #31
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Dear Austin,

I'm so sorry that you have been sick for so long - what a bummer. And that there are so many other things that some of us attempt to use as much as we can to compensate for the absense of strong opiates in our system that you find you can't tolerate.

It seems that you have had a really hard time of it. Life is just SO not fair.

After being on a medical LOA for my RSD for a while, I really wanted to go back to work, and knew that I couldn't do it on the meds I was taking. So I needed to do something to help myself. Ketamine infusions have helped me get SOME of my life back. (I'll never be like I was before the RSD.) I'm so sorry that it's not something that seemed to work for you when you saw Dr. S. Have you considered consulting with Dr. Getson in NJ? He's not too far from where you live and is really one of the nicest docs I have ever met. I bet you would like him a lot. And he will help you with everything - your meds, your belly, migraines, possible ketamine, etc. He talked to my doctor up here in RI when my case was transferred up here a few months ago. He's just a great guy.

What would be wonderful is if maybe you could plan to go back to school someday.

Hyperalgesia, or rebound pain, can occur when you've been taking really high doses of meds for a long time. You won't find out if that is the case until you've come off of them for a day or so. I think that happens to me with all the Fiorcet I tend to take for my headaches sometimes....

What's interesting is how many hits this thread has had - obviously Oxycontin is a med a lot of RSDers have taken, and the change that the drug company has made to the formula has impacted many users. My doc wouldn't prescribe it for me though, he said it was too addictive. I have the 5 mg. Oxycodone for occasional use when needed, most of the time I just take Fiorcet for my head pain.

All the best to you, Sandy

Quote:
Originally Posted by LordWood View Post
I've been dealing with specialists since I was 1.5 years old as I started with Ulcerative Colitis and then it went to crohns. I've had more health issues then most people have in there entire life. I've dealt with RSD specialists since 13 so don't mistake what I say or put words in my mouth. What other "modalities" physical therapy? HBOT? Nerve blocks? Or perhaps there new method of freezing and killing the nerves they choose to do it to? I will not even list ketamine as its a joke and a lot agree with that and I'm not just talking little infusions I'm talking also about those that get the full schwartzman routine. My apologies as from most of your posts you act like your in remission. In regards to your additional post I have 2 pharmacists that are family friends as well as doctors. I was thrown into this insane world of RSD just like many others who started younger and yes we actually do know quite a bit as we've had our lives stripped away and quite a number of years dealing with it. Just because your older does not mean you know more. Hopefully you can understand that others do actually know what were talking about.
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Old 09-08-2010, 12:55 AM #32
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SandyRI I have attempted other options and they all turn to be nothing but complete waste of time. If dealing ok without meds then there is a clear difference between you and most of the rest of us. As we do not have the option of something else as we have all ready be there done that. *edit*
On the concern of "Hyperalgesia, or rebound pain" this is not an issue as I've been off my meds for a full week and nothing happened while in the hospital and then was off them for over 2weeks when my insurance switched. These meds are nothing more then false hope which is better then nothing at least Im doing something. I'm glad to hear ketamine helped you. I am currently in the process of getting with a doctor out of New Mexico that does a different way with the use of ketamine compared to the others as well as higher doses.



Quote:
Originally Posted by SandyRI View Post
Dear Austin,

I'm so sorry that you have been sick for so long - what a bummer. And that there are so many other things that some of us attempt to use as much as we can to compensate for the absense of strong opiates in our system that you find you can't tolerate.

It seems that you have had a really hard time of it. Life is just SO not fair.

After being on a medical LOA for my RSD for a while, I really wanted to go back to work, and knew that I couldn't do it on the meds I was taking. So I needed to do something to help myself. Ketamine infusions have helped me get SOME of my life back. (I'll never be like I was before the RSD.) I'm so sorry that it's not something that seemed to work for you when you saw Dr. S. Have you considered consulting with Dr. Getson in NJ? He's not too far from where you live and is really one of the nicest docs I have ever met. I bet you would like him a lot. And he will help you with everything - your meds, your belly, migraines, possible ketamine, etc. He talked to my doctor up here in RI when my case was transferred up here a few months ago. He's just a great guy.

What would be wonderful is if maybe you could plan to go back to school someday.

Hyperalgesia, or rebound pain, can occur when you've been taking really high doses of meds for a long time. You won't find out if that is the case until you've come off of them for a day or so. I think that happens to me with all the Fiorcet I tend to take for my headaches sometimes....

What's interesting is how many hits this thread has had - obviously Oxycontin is a med a lot of RSDers have taken, and the change that the drug company has made to the formula has impacted many users. My doc wouldn't prescribe it for me though, he said it was too addictive. I have the 5 mg. Oxycodone for occasional use when needed, most of the time I just take Fiorcet for my head pain.

All the best to you, Sandy

Last edited by Chemar; 09-08-2010 at 07:46 AM. Reason: NeuroTalk Guidelines
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Old 09-08-2010, 12:12 PM #33
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Quote:
Originally Posted by LordWood View Post
SandyRI I have attempted other options and they all turn to be nothing but complete waste of time. If dealing ok without meds then there is a clear difference between you and most of the rest of us. As we do not have the option of something else as we have all ready be there done that. *edit*
On the concern of "Hyperalgesia, or rebound pain" this is not an issue as I've been off my meds for a full week and nothing happened while in the hospital and then was off them for over 2weeks when my insurance switched. These meds are nothing more then false hope which is better then nothing at least Im doing something. I'm glad to hear ketamine helped you. I am currently in the process of getting with a doctor out of New Mexico that does a different way with the use of ketamine compared to the others as well as higher doses.
Lordwood...

I have been reading these posts flying back and forth... unfortuantely, I caught your last post prior to the edit version and I want to pipe up and say please, take it outside..those posts are not necessary..This whole RSD group are like family to me, I care about them..lets not go there..

Sandy RI and Gabbycakes (I am sure as well as you and all of us here)... have and paying a very big price with our daily struggles due to RSD. Gabby and Sandy are merely trying to help with experiences and facts. Please, don't take any of it personal...our Personal trumps, good and bad are all in an attempt to tame this mean disease..Please, no more darts just concern, support and caring for one another here..

I hope you have a nice day and keep us posted on how you are doing...

Take care, Kathy
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Old 09-08-2010, 03:52 PM #34
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The other members and I were having a discussion on the actual item at hand, before and somewhat during the time gabbycakes decided to chime in that she knows better then the rest of us so I simply defended the others. I'm finding many won't speak up for their views as they've become to used keeping quiet and don't like to disrupt. Thats sad as when your a family everyone should be able to speak up on anything as well as you shouldn't have one that believes there in control, no others that are truly being sarcastic and getting away with it.

This post is meant for those effected by Oxycontin.





Quote:
Originally Posted by keep smilin View Post
Lordwood...

I have been reading these posts flying back and forth... unfortuantely, I caught your last post prior to the edit version and I want to pipe up and say please, take it outside..those posts are not necessary..This whole RSD group are like family to me, I care about them..lets not go there..

Sandy RI and Gabbycakes (I am sure as well as you and all of us here)... have and paying a very big price with our daily struggles due to RSD. Gabby and Sandy are merely trying to help with experiences and facts. Please, don't take any of it personal...our Personal trumps, good and bad are all in an attempt to tame this mean disease..Please, no more darts just concern, support and caring for one another here..

I hope you have a nice day and keep us posted on how you are doing...

Take care, Kathy
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Old 09-08-2010, 04:14 PM #35
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Sorry but this thread has gone totally off topic and become personal and negative and we do not allow that here. I have already had to edit a previous post and had hoped not to have to intervene again.

As always, should anyone be unhappy with a post from another, please use the report button and all of us mods will get a notice, discuss the report and take action if it is required.

My PM box is always open if there are problems that need to be addressed.

As most members have quite enough to deal with from their illness, we would prefer if those with personal disagreements keep those off the boards and rather try to resolve things in PM please, either with us or with each other.

thanks. I will be locking this thread now as it has taken a negative turn.
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