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 08-03-2010, 10:59 PM #31
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Originally Posted by cindi1965 View Post
I don't want to scare you, but my EMG was one of the worst experiences of my life. On the day that I had it my leg was really dry and scaly, so the adhesive to the electrodes wouldn't stick and they came out with a inconclusive results...the next one was still inconclusive and I refused to have a third one. It hurt soooo bad and you could just look at my leg and see the mottling and swelling, hair growth..the whole nine yards.....

I got my diagnosis by process of elimination because I was born with Cerebral Palsy and they thought all the symptoms came from that. My RSD started after a bout with a serious internal MRSA infection. It took over a year and a half and about 5 neurologists until my PM doc just tooj one look and said beyond a doubt I had RSD. I was treated like crap until I found him and and he works along side of my GP and they are starting to get it right after 2 years. I am in the process of getting SSDI and I am waiting for my date for the judge.

In the meantime while trying to get my diagnosis my RSD has been spreading, so each appt for SSDI I have a new symptom....I almost have my med "cocktail" figured out so that I can function as a wife and mother and a new grandma. This is the only thing that I have been asking for. I know that I can't work my job as an autism mentor, which I have been doing for 24 years, but I try to stay positive and try to find out what it is that will make me learn to live with this crazy disorder.

Good Luck with the EMG and I hope it goes better than mine
God Bless,
Cindi

My CRPS was as result of a shoulder arthroscopy and resultant brachial plexus damage. Numerous issues resulted, one of which was near anesthesia of much of my affected shoulder, arm and hand. I couldn't feel most of both of my EMG's and over several areas, didn't even know when the neurologist put in and took out the needles! Weird.

Anyway, good luck!
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Old 08-07-2010, 08:10 PM #32
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Originally Posted by Neoplasm View Post
Reflex Sympathetic Dsytrophy is what they'll call it if they can't find anything. It's the least satisfying kind of diagnosis as it explains nothing. I'm not saying there's nothing wrong, just that if you have a diagnosis of RSD, it means they didn't find anything.
Where did you hear this? I am sory but you have been missinformed, RSD is what they used to call this condition before a group of medical doctors and scientists got together and renamed it in complex regional pain syndrome in1994, alot of doctors and such still call it RSD.. Technicaly though RSD now only consists of patients who's pain is still sympatheticaly maintained.. meaning origionating from the sympathetic nervous system.
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Old 08-10-2010, 09:06 AM #33
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I have learned that the medical industry is no different from any other business it all about dollars. Even the best of the best yes they do a incredible job but they want to make money.

Gabbycakes
I don't have a problem with my doc making money. The more, the better. For that matter with this economy, I don't have a problem if all of us make more money! The more money docs or any business make, the more people they hire. And the more the government collects in taxes to support social programs. What could ever be wrong with that?!

Medicine, like every other business, survives on good people, who have lives, families, bills, etc., so everyone needs to make money, right? And if you are a "good" doc, then you are likely busy and make money, right? Who doesn't want a good doc?

I have yet to see a post on this list like, "Hey, does anyone have a terrible doc in East Boofu (not a real city), where I just moved, you know, someone who has no patients, no wait, uses dirty needles to save money and drives a '73 Corolla?" No thank you...
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Old 08-10-2010, 01:49 PM #34
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Originally Posted by Sandel View Post
Where did you hear this? I am sory but you have been missinformed, RSD is what they used to call this condition before a group of medical doctors and scientists got together and renamed it in complex regional pain syndrome in1994, alot of doctors and such still call it RSD.. Technicaly though RSD now only consists of patients who's pain is still sympatheticaly maintained.. meaning origionating from the sympathetic nervous system.
CRPS/RSD, whatever, in practice people use the terms interchangeably. Doesn't really change my point anyway.
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Old 05-13-2011, 05:32 PM #35
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Hi,

I am new to NeuroTalk, I registered today. I am hoping that with the help of others who suffer with RSD I will be better able to deal with it. I was diagnosed with RSD five years ago after a compartment syndrome injury while riding a bicycle! After three surgeries and six weeks in the hospital I was dishchared and went for six ambulatory surgical surgeries as well, to save my foot. I was extremely grateful to say the least.

I have tried to learn to live with chronic unrelenting pain, and for the most part I am. However, this has changed my life considerabaly. I can no longer some of the things I used to enjoy. I suffer with depression and have to manage that as well.

My doctor wants me to have another EMG next month to see if this has progressed. The thought of that happening is quite discouraging. The pain with this diagnosis is very difficult to be managed very well. It feels as if my foot is on fire and the nerves are right on the surface. Wearing anything on my foot is painful, even a sock. Sometimes vibrations can even make it worse. My family does not understand and that is upsetting for me. I rarely even complain or talk about it. I do not baby myself, I walk with a cane and walk a great deal. I have some paralysis due to the surgeries and I refuse to let it get worse. I have extreme sensitivity to hot and cold as well. I am insane or is this what happens with RSD.

I am hoping to learn and share with others from this and this seems like the perfect place to do this. I thank you all for sharing your experience and your hope. Maybe one day they will find a cure, but more money is needed for research.
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Old 05-13-2011, 05:59 PM #36
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Originally Posted by tatertim View Post
Hey you guys, I'm new to this crowd. I had my first visit with a pain specialist a few weeks ago. I was sent to him after a botched knee surgery and suffering a DVT from the surgery, which led to Post Thrpmbotic Syndrome. Upon examining me initially, he noticed hair loss , loss of feeling, and major atrophy in the affected foot and leg. He then told me he suspects RSD, and then schedued me for an nerve tes, an EMG I think, for this week.

Okay, so after reading up on RSD and that there is no test to diagnose it, and that the doctor can only diagnose it through physical examination/symptoms experienced, I can't help but wonder what the test this week is for. But primarily, I've been circling around one question in particular: If my doctor suspects RSD, does that more or less mean that I do in fact have it, more or less?

Thanks in advance.
Hi Tatertim,
I am also new to this site. I registered today hoping that through the help of others I will be able to live with this and to get the proper treatment. I have had RSD for five years after a compartment syndrome injurt to my foot. I had three major surgeries and six ambulatory surgical procedures. I had three EMG's done at the time which can only detect nerve damage, thereby confirming my doctors "opinion" that I had RSD. To my knowledge there is no definitive test to diagnoosis RSD. Basically the signs and symptoms are what tell a doctor what it is. It is a very difficult thing to live with because for me, I have unrelenting pain which is difficult to manage. I will have another EMG next month to seee if there is any progression. I would certainly have the EMG because perhaps it will rule out anything else. I wish you luck and hope you will post your experience and results.
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