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 04-12-2009, 11:29 AM #1
AintSoBad AintSoBad is offline
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Default Nice Article in March/April Neurology Now

My brother emailed to tell me about an article on RSD/CRPS in the latest issue of Neurology now, magazine.

Written by Dr Debra Gordon, M.S., it's interesting and well written.
Several things struck me.
67% of us consider suicide.
Avoid Nerve Blocks! They can cause even more damage! Wow!

A copy of this should be kept with you, and might become your "pal".
Especially when visiting a doctor who isn't familiar enough with RSD.

There is also a "black box" mention (not the negative kind) of "At least 20 clinical trials" including Dr. Schwartzman's in Philly. He is the gentleman who diagnosed me after 7 years of agonizing, frustrating pain and emotions. Which, of course, continue.

Only thing I found about the story somewhat annoying was the "necessary happy ending". It just doesn't end that way often enough.

I'm going to make a copy of it, scan it into my computer.


Pete
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Old 04-12-2009, 01:03 PM #2
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Default I read it too

Quote:
Originally Posted by AintSoBad View Post
My brother emailed to tell me about an article on RSD/CRPS in the latest issue of Neurology now, magazine.

Written by Dr Debra Gordon, M.S., it's interesting and well written.
Several things struck me.
67% of us consider suicide.
Avoid Nerve Blocks! They can cause even more damage! Wow!

A copy of this should be kept with you, and might become your "pal".
Especially when visiting a doctor who isn't familiar enough with RSD.

There is also a "black box" mention (not the negative kind) of "At least 20 clinical trials" including Dr. Schwartzman's in Philly. He is the gentleman who diagnosed me after 7 years of agonizing, frustrating pain and emotions. Which, of course, continue.

Only thing I found about the story somewhat annoying was the "necessary happy ending". It just doesn't end that way often enough.

I'm going to make a copy of it, scan it into my computer.


Pete
asb
Thanks for mentioning this article Pete. I read it also along with 2 others in medical journals this month. It seems as though the medical community is becoming educated to CRPS/RSD. I recently purchased a book from Medifocus about RSD and it had some links to abstracts. Most of them were quite recent. In fact, I went to the hospital library (I work in a hospital) to see if we had those journals. We had one so I copied it and ordered the other two articles.

Since my diagnosis is only 3 months old I was going to have a nerve block late this month. But I canceled it because of what I read. I'm kind of scared to do anything.

My scanner is not working but I'll try to see if I can pass along these articles if anyone is interested.
Sally
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Old 04-12-2009, 01:18 PM #3
Martg1946 Martg1946 is offline
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Confused Hi from Pepper

Quote:
Originally Posted by AintSoBad View Post
My brother emailed to tell me about an article on RSD/CRPS in the latest issue of Neurology now, magazine.

Written by Dr Debra Gordon, M.S., it's interesting and well written.
Several things struck me.
67% of us consider suicide.
Avoid Nerve Blocks! They can cause even more damage! Wow!

A copy of this should be kept with you, and might become your "pal".
Especially when visiting a doctor who isn't familiar enough with RSD.

There is also a "black box" mention (not the negative kind) of "At least 20 clinical trials" including Dr. Schwartzman's in Philly. He is the gentleman who diagnosed me after 7 years of agonizing, frustrating pain and emotions. Which, of course, continue.

Only thing I found about the story somewhat annoying was the "necessary happy ending". It just doesn't end that way often enough.

I'm going to make a copy of it, scan it into my computer.


Pete
asb
Hi, I'm very interested because I'm supposed to get my first nerve block this Wednesday..I thought they would help with the pain. What did the article say about this...Thanks, Pepper
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Old 04-12-2009, 08:10 PM #4
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Default

Not so sure I agree with the opinion on the nerve blocks - my RSD was exploding out of control until I started getting them. I think my symptoms are slowly getting better after each one. I'm scheduled for my 6th in less than 2 weeks.

Is there an alternative treatment that is recommended that is supposedly better?

Thanks, Sandy
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Old 04-13-2009, 11:18 AM #5
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Smile Hi Pete

Pete,

I would love to read the article. Once you scan it, will you email me a copy?

Thanks,
Dew
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 04-13-2009, 02:22 PM #6
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i would really like to know where i could get a copy of that is there anyway you can let me know thank you
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Old 04-13-2009, 02:40 PM #7
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Default I don't mean to sway your decision

Quote:
Originally Posted by Martg1946 View Post
Hi, I'm very interested because I'm supposed to get my first nerve block this Wednesday..I thought they would help with the pain. What did the article say about this...Thanks, Pepper

Hi Pepper,
Please don't change your app't because of what I said. My rsd is only 3 months old and the pain is controlled at this point with Lyrica. I probably WOULD do a nerve block if my pain was out of control. However, this article (I don't have it in front of me) just said something about the long term effects of nerve blocks aren't known and the results are transient - is this right Pete? Therefore I'm not going to do any until I HAVE to. I talked with my pain management doc today and she agreed that I shouldn't do one until the pain level gets so bad the pain meds aren't helping or it starts to rapidly spread. Some people get excellent results, so if you're to that point go fo it! One of the things about rsd is that we all have different symptoms, treatments, and outcomes. And so far nothing works for everyone all the time.

Your physicians will guide you and should always include you in all treatment decisions. Please let me know if the block helps!
Sally
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Old 04-13-2009, 04:10 PM #8
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Hi Pete,

Can you give us the link to the artical?

TY
Debbie
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Old 04-13-2009, 04:31 PM #9
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Getting nerve blocks are crucial treatment in the beginning. They don't cause damage when you get a series of them to begin with. You often don't get more than 4-6 at the start if they help. The danger begins when you keep getting them over a very long period of time. I'm not saying anyone should stop blocks if they help. It means the pain is still SMP. But you have to weigh the risk versus benefit if you start getting more than 20.

The "damage" they mention is to the ganglion the blocks are injected in when you get A LOT of them, as in 20 or more. I read that in the first year I got rsd when I was researching. The repeated inserting of the needle in the ganglion is what does it. Something most people also don't know is that in just 6 months after getting rsd, there is permanent damage to nerve endings in the body.

Thought I'd put this down because I do not want anyone canceling blocks or afraid to get them. There is NO danger of damage for most everyone who gets blocks because they rarely get so many.

Hugs,

Karen
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Old 04-13-2009, 06:28 PM #10
AintSoBad AintSoBad is offline
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For Anyone who would like,
I have scanned the article, and until it is available on the
neurologynow.com
website
I'll be happy to send it in pdf format (I don't think the magazine would mind),
if you email me,

just PM me,
and give me an email address you want it sent to.


I'll get it right out to you!

Pete
ASB

Last edited by AintSoBad; 04-14-2009 at 12:36 PM.
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