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 11-16-2009, 11:11 PM #1
RNcrps2 RNcrps2 is offline
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Default Ignorance about RSD

Recently went to ortho. dr. (who did past surgery) and he finally admitted that i have RSD but all of his information is wrong. He says things like: oh it doesn't spread, it usually gets better and goes away, it's not chronic, and I think your pain Dr. has you on too much medicine. When i attempted to correct him- he just looked at me like i was wrong. I left the office soo angry!! I felt like he didn't believe the pain RSD causes. My pain Dr. said my RSD is over a year and that it is chronic. That there is a chance of it spreading if we don't get it under control. He has me on lyrica, cymbalta, kadian and lidoderm patches. Everything i have read says it needs a combination of meds to get under control. I trust my pain Dr. Anyone know of current medical articles on RSD that i can give this ortho dr.? Has anyone had this problem?
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Old 11-17-2009, 10:33 AM #2
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I agree about the ignorance of some doctors and RSD!!!

My family doc tried to pin my pain on Fibro... I bluntly said that I may now have Fibro but I had NONE of the symptoms when I was diagnosed with RSD by seven different doctors.

When I said this, he just looked at me and then dropped the subject and no longer addressed my pain. He just did a quick physical and ordered various blood tests....


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Old 11-17-2009, 01:51 PM #3
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Quote:
Originally Posted by RNcrps2 View Post
Recently went to ortho. dr. (who did past surgery) and he finally admitted that i have RSD but all of his information is wrong. He says things like: oh it doesn't spread, it usually gets better and goes away, it's not chronic, and I think your pain Dr. has you on too much medicine. When i attempted to correct him- he just looked at me like i was wrong. I left the office soo angry!! I felt like he didn't believe the pain RSD causes. My pain Dr. said my RSD is over a year and that it is chronic. That there is a chance of it spreading if we don't get it under control. He has me on lyrica, cymbalta, kadian and lidoderm patches. Everything i have read says it needs a combination of meds to get under control. I trust my pain Dr. Anyone know of current medical articles on RSD that i can give this ortho dr.? Has anyone had this problem?
Hi RN and welcome to neurotalk,
Although we are not Drs., there are years and years of experience =living with RSD. Your ortho is protecting himself!- He is minimizing the symptoms-could it be fear of lawsuit? That's a guess, if so,
he'll put you off until the 2 year statue of limititions is over with.
Are you in physical therapy? Physical therapy and meds has kept me mobile and not sensitive to touch. RSD is an autonomic disorder, affecting involuntary organs.. Anti-anxiety med is good for some of us. RSD affects the limbic part of our brain-some of us forget words, while we are speaking, grasp for wording-panic attacks can be a sign-I had never had them before. High and or Low blood pressure. circulation, poor immune system are all signs of rsd.Many are on disability. It was 4 years before I was diagnosed. I got it right after surgery.
Ask anything youu want, you'll get a lot of information and support. Two sources for research are RSDSA - you can put your zip code in and find the closest support group. Also rsdrx.com is a site and under puzzles list are 146 questions with Drs. answer. Dr. Hooshmand is retired, but some good information. Take care, loretta
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Old 11-17-2009, 02:30 PM #4
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Orthopedic docs are notoriously ignorant of RSD! My first doc was an ortho, and he accused me of malingering, and sent me off to a psych. That's when I started my journey to find a doctor, which was the first 7 years!

Thank God my Chiro recognized it, and sent me to Dr S, in Philly. Got me in quick, too.

This is YOUR Body, YOUR Life!
If this (doctor) were say, a friend, you'd "defriend" him quickly!
Don't be afraid to do that now, he's not got your best interest at heart, I don't it's fear of anything, other than just plain ignorance!

Your PM doc should know a good Neuro for you!

Be Well!

Pete
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Old 11-17-2009, 04:54 PM #5
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Default thanks Loretta

Quote:
Originally Posted by loretta View Post
Hi RN and welcome to neurotalk,
Although we are not Drs., there are years and years of experience =living with RSD. Your ortho is protecting himself!- He is minimizing the symptoms-could it be fear of lawsuit? That's a guess, if so,
he'll put you off until the 2 year statue of limititions is over with.
Are you in physical therapy? Physical therapy and meds has kept me mobile and not sensitive to touch. RSD is an autonomic disorder, affecting involuntary organs.. Anti-anxiety med is good for some of us. RSD affects the limbic part of our brain-some of us forget words, while we are speaking, grasp for wording-panic attacks can be a sign-I had never had them before. High and or Low blood pressure. circulation, poor immune system are all signs of rsd.Many are on disability. It was 4 years before I was diagnosed. I got it right after surgery.
Ask anything youu want, you'll get a lot of information and support. Two sources for research are RSDSA - you can put your zip code in and find the closest support group. Also rsdrx.com is a site and under puzzles list are 146 questions with Drs. answer. Dr. Hooshmand is retired, but some good information. Take care, loretta
Thanks Loretta for the info. I have poor word finding problems and short term memory which i just figured it was the meds. I am in PT/OT and trialed SCS. Still undecided. Researching ketamine now.
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Old 11-17-2009, 04:58 PM #6
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Originally Posted by AintSoBad View Post
Orthopedic docs are notoriously ignorant of RSD! My first doc was an ortho, and he accused me of malingering, and sent me off to a psych. That's when I started my journey to find a doctor, which was the first 7 years!

Thank God my Chiro recognized it, and sent me to Dr S, in Philly. Got me in quick, too.

This is YOUR Body, YOUR Life!
If this (doctor) were say, a friend, you'd "defriend" him quickly!
Don't be afraid to do that now, he's not got your best interest at heart, I don't it's fear of anything, other than just plain ignorance!

Your PM doc should know a good Neuro for you!

Be Well!

Pete
asb
Pete thanks for the advice. You say you went to Dr. S. Did u have ketamine inf?
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Old 11-17-2009, 05:23 PM #7
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Pete thanks for the advice. You say you went to Dr. S. Did u have ketamine inf?
RN,
I had a 10 day, 24/7 Lidocaine infusion. It worked but, not so much that I'd bother again...
I'm kind of far gone having had this since '83. Had the Lidocaine in 2001.

I see his ex partner, (and still good friend) Dr.Knobler now in Fort Washington, PA. I've know them both since about 89-90, and they're both great doctors for rsd!

Hope you do well!
(I truly do think it's time for you to move on from the Ortho, and on to a knowledgeable Neuro)~!

Blessings to you, we're all here for you!

Pete
asb
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Old 11-17-2009, 05:26 PM #8
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Quote:
Originally Posted by RNcrps2 View Post
Recently went to ortho. dr. (who did past surgery) and he finally admitted that i have RSD but all of his information is wrong. He says things like: oh it doesn't spread, it usually gets better and goes away, it's not chronic, and I think your pain Dr. has you on too much medicine. When i attempted to correct him- he just looked at me like i was wrong. I left the office soo angry!! I felt like he didn't believe the pain RSD causes. My pain Dr. said my RSD is over a year and that it is chronic. That there is a chance of it spreading if we don't get it under control. He has me on lyrica, cymbalta, kadian and lidoderm patches. Everything i have read says it needs a combination of meds to get under control. I trust my pain Dr. Anyone know of current medical articles on RSD that i can give this ortho dr.? Has anyone had this problem?
Probably most if not all of us have had that problem with a doc or three! I handed my surgeon Schwartzman's paper "The Natural History of Complex Regional Pain Syndrome," and his attitude changed. He further leaned towards the truth when he saw multiple stellate ganglion blocks work and after they wear off, he sees my hand sweat and turn pretty colors! I think fmichael has a link to that paper...
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Old 11-18-2009, 01:58 AM #9
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If I had a dime every doctor over the past year and a half that told me wrong info about my RSD, I would be a rich woman. I went for a check-up at my MD's yesterday and he is the ONLY person who actually knows how to treat me. He has MS, so he understands what it is that I go through. My neurologist has a fit when I look things up on the internet, but I had the symptoms of RSD long before I started looking on the web. My MD just rolled his eyes and told he that I need to educate myself so I can be the best patient I can be for the doctors. I told him that I found this board and he was really excited...I told him that there is an MS board, so he may be joining.

Being brushed off by doctors is a normal side effect of our treatment as RSD patients...I'm getting used to it, but I am armed with way more knowledge than I used to and I think it ****** my neurologist off, because I can back up what I am presenting to him.
Good luck,
Cindi
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Old 11-18-2009, 08:52 AM #10
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Quote:
Originally Posted by Dubious View Post
Probably most if not all of us have had that problem with a doc or three! I handed my surgeon Schwartzman's paper "The Natural History of Complex Regional Pain Syndrome," and his attitude changed. He further leaned towards the truth when he saw multiple stellate ganglion blocks work and after they wear off, he sees my hand sweat and turn pretty colors! I think fmichael has a link to that paper...
Thank u so much i will look up fmichael for the link!!
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