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 03-07-2009, 01:03 AM #1
Mermaid Mermaid is offline
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Default New to CRPS....but not New...and a Newbie!

Hello to everyone. I have just found this forum, as I had been searching the internet looking for some guidance at which way is best to jump
My story briefly is that I've have had this condition apparently for 4 years. post a hand fracture. Unfortunately it seems my family doctor was not up to speed with RSD and I was not seen by a Pain Specialist for nearly 18 months post my diagnosis That said I am now undergoing Stellate Ganglion blocks.
I have now had 3, and I have had absolutely zero relief.
I was getting different potential outcomes of the results of the blocks from 2 specialist crps/pain doc's, because of the duration of my CRPS, however both agreed I should try them, so I did. The suggestion now is to consider something else. That's how I came across this forum. The Doc did suggest something about pumping the blood out of my affected hand/arm, but that would involve putting an I/V in my affected hand, and I am way to uncomfortable to contemplate this.
I am on drugs, Lyrica 300mgs daily and M-Esclon 10mgs. The Lyrica helps with the electric shock pain. The other none that I'm aware of. I have been offered anti-depresants, which I refused.
Can anybody advise me what happens post these Stellate blocks?
Thankyou.
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Old 03-07-2009, 02:21 PM #2
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Default Hi Mermaid,

Welcome to the group.

I had SGB's and they did work for me but for some they don't. They do usually do a series of them. I don't know how many they have you scheduled for but it might be more. I had 3 and was suppose to have about 15 more but I had a panic attack with the 3rd one so we backed off on them. I was happy with the 3 though.

There will be others come on here that will help you out with more answers.

Today's Sat. and they are most likely out enjoying the day. I went to some yard sales today but it started snowing on me.

Ada
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DianaA (03-07-2009), Dubious (03-08-2009)
Old 03-07-2009, 08:18 PM #3
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Default Hi Mermaid

I have had three series of Stelate Ganglion Blocks and they worked for me. They were a temporary vacation from the pain. I had ten blocks at a time each time. That was in the beginning 89-90, 91, its been 20 years of RSD for me but, the blocks may be the same.I do hope you get some relief. Keep us posted. Welcome to the forum we are all here to help and give support.
Di
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Old 03-07-2009, 08:27 PM #4
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Usually getting no relief at all from block is a sign the pain is now SIP or Sympathetically Independent Pain, and no long SMP or Sympathetically Maintained Pain. When pain is SMP, blocks tend to give some kind of relief. Further blocks won't do anything to help, after 3 of them with no response. I had 1 and it threw me into a 2 month flare! Haven't found many others who had that kind of reaction. LOL I'm rather weird anyway.

Draining the blood from the arm? I don't see how the heck that would help anything! That sounds really wierd to me.

What comes next in rsd treatment really depends on the doc. Every one of them has a different way of going about things. There's no "rules" for what to do once you have rsd. Generally it's just finding what works for you.

Glad to have you here but sorry it's because of rsd.

Hugs,

Karen
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Old 03-08-2009, 01:57 AM #5
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Quote:
Originally Posted by GalenaFaolan View Post
Usually getting no relief at all from block is a sign the pain is now SIP or Sympathetically Independent Pain, and no long SMP or Sympathetically Maintained Pain. When pain is SMP, blocks tend to give some kind of relief. Further blocks won't do anything to help, after 3 of them with no response. I had 1 and it threw me into a 2 month flare! Haven't found many others who had that kind of reaction. LOL I'm rather weird anyway.

Draining the blood from the arm? I don't see how the heck that would help anything! That sounds really wierd to me.

What comes next in rsd treatment really depends on the doc. Every one of them has a different way of going about things. There's no "rules" for what to do once you have rsd. Generally it's just finding what works for you.

Glad to have you here but sorry it's because of rsd.

Hugs,

Karen
I think Karen is exactly right. I think my pain is SMP from all I have read and due to the origin of my onset. Fortunately, the blocks do work at least temporarily. I have had 5 SGB now but PT, to loosen up my shoulder, exacerbates the CRPS so I am now looking at number 6 very soon! God I hate this disease. And I do have the best docs, thank you ***
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Old 03-08-2009, 10:45 AM #6
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Originally Posted by Mermaid View Post
The suggestion now is to consider something else. That's how I came across this forum. The Doc did suggest something about pumping the blood out of my affected hand/arm, but that would involve putting an I/V in my affected hand, and I am way to uncomfortable to contemplate this.
Dear Mermaid,

Can you tell us more about the procedure that your doctor is proposing? I know why you would not want an IV in your affected hand, I won't let my doctors touch me with a needle any where on the left side of my body. I'd like to try to understand what it is that is being offered to you as an alternate, your doctor may be offering something that may be more beneficial for you?

MsL
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Old 03-08-2009, 11:03 AM #7
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Quote:
Originally Posted by Mermaid View Post
Hello to everyone. I have just found this forum, as I had been searching the internet looking for some guidance at which way is best to jump
My story briefly is that I've have had this condition apparently for 4 years. post a hand fracture. Unfortunately it seems my family doctor was not up to speed with RSD and I was not seen by a Pain Specialist for nearly 18 months post my diagnosis That said I am now undergoing Stellate Ganglion blocks.
I have now had 3, and I have had absolutely zero relief.
I was getting different potential outcomes of the results of the blocks from 2 specialist crps/pain doc's, because of the duration of my CRPS, however both agreed I should try them, so I did. The suggestion now is to consider something else. That's how I came across this forum. The Doc did suggest something about pumping the blood out of my affected hand/arm, but that would involve putting an I/V in my affected hand, and I am way to uncomfortable to contemplate this.
I am on drugs, Lyrica 300mgs daily and M-Esclon 10mgs. The Lyrica helps with the electric shock pain. The other none that I'm aware of. I have been offered anti-depresants, which I refused.
Can anybody advise me what happens post these Stellate blocks?
Thankyou.
Hi Mermaid,

I to am new here. RSD 8/07 l upper xtremity. Since 10/07 received 27 Stellate blocks the series never got me over the hump and 2 Radio Frequecy lesioning , but I did get amazing results from them each time(short lived however). Usually they will not do more than 5 except in rare instances. The blocks for me worked within 20 minutes or so and also swelling started to go down in an hr. sweating stopped etc....There are a lot of different treatments and they can also change depending on your own circumstances. I was offered and all set up to get a Spinal Cord Stim. ready for that surgery and an Orthopedic surgeon stepped in an said that would likely not help me because of the type of RSD I have. Well I had surgery and am doing considerably better. There are no promises with any of the treatments. Just keep strong and don't give up. You will find something to help. Just keep pushing frwd. Good luck and I truly hope your & everyone in pain has better days........... I have never seen any procedure in my research about treatments on transfusing blood. That does not mean it may not exist. On the safe side I have always gone for second opinions when my gut told me to.

Debbie
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Old 03-08-2009, 04:43 PM #8
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hi mermaid and welcome
i have rsd full body and internal now for 11yrs. i get very little relife from many treatments i have had SGB on and off for 10 yrs also lumbar blocks. i have had a bier block that they do use that turniquet time thing to do the block this was very early in my rsd. and i didnt know better it just made me worse. Karen blocks have made me worse. given me flares. i like you am weird about things my sister laughs and calls me a freak of nature lol. where do you live mermaid. ? i also refuse any needles in my arm or side that my rsd started

carrie
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Old 03-08-2009, 09:23 PM #9
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Thanking you all very much, for the welcome and the support.
Well I've managed to work out it is a Bier Block that's being proposed.
I'm not quite sure what to make of this, as the IV is put into the affected hand, and as I can't even wear my wedding ring, I'm not sure how I will cope with a needle Equally I'm keen for any intervention that might help.
I'm going to go for one more SGB as I don't think the last one hit home at all, and I guess I'll take it form there. Thanks again
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Old 03-08-2009, 09:38 PM #10
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LOL Carrie, freak of nature......Yup that sums me up as well! ROFL I've always prided myself on my "extreme" reactions and well just general weirdness overall. How many people, when forced into inactivity, lose weight?!? If only they could bottle me I'd be a very rich woman! LOLOLOLOL

Hugs,

Karen
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