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Old 09-17-2012, 05:22 PM #1
RSDDiagnosisCST RSDDiagnosisCST is offline
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Question Need advice - RSD Diagnosis: very concerned

Hi there,

This is the first time I have ever been on a forum. I am 34 years old, female and was diagnosed with RSD in May 2007. Interestingly enough, it was caught early by an orthopedic specialist at Georgetown University Hospital. He referred me to a anesthesiologist for further help. It should be noted that I was very physically fit, ex elite gymnast and distance runner in college.

The condition effected my right foot and ankle. After ruling out other things, as well as some diagnostic tests, the diagnosis was clear. My physicians started me on pain medications and it took several attempts to find a combination of medicines that worked. Lyrics was the absolute worse as far as side-effects and made me extremely tired and in a fog. For someone who is very fit, I found this to be almost as bad as the disease. The combination that ended up working for me was Celebrex once a day and 10mg of Percocet when needed. In addition, I was given 12 weeks (1x a week) of a lumbar nerve blocker. My leg and foot was confined to a walking cast which was only to be taken off at night. I wore this for 9 months.

Needless to say, my RSD went into remission. I have had relatively no issues since then. Recently I have recognized some symptoms and have become very concerned. Not to mention, I live in Atlanta now. I do not have any resources as far as physicians are concerned. I don't even have a primary care physician yet. I really need someone who will understand what worked for me the first go around. I have heard horror stories about people who were talked into surgery and other experimental treatment.

At this stage of the illness, I would prefer to not have anything too drastic or invasive. The injections in 2007 were bad enough. I am still very active (or until) recently), training for 10ks and sprint tri's. Of course my health comes first, but I am a huge believer of good diet and exercise. If I am not able to train, I am scared of becoming depressed and feel that my spirit will let the disease take over. Most importantly, I need a specialist who will understand the athlete component. That perhaps I cannot run at the moment, but that swimming could be an alternative...etc.

Hopefully this makes sense and there is someone else out there who has a similar philosophy or experience. I am very saddened by the stories of people who have been plagued with this awful disease. I wouldn't wish it on my worst enemy!

Please feel free to reply and ask questions and/or give me any guidance. Thanks, Courtney
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Rrae (02-07-2013)

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Old 09-17-2012, 09:06 PM #2
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Heart courtney

You may want to post under the SCS&pump, The link is above. Welcome to our site!
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Old 02-03-2013, 12:46 AM #3
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Quote:
Originally Posted by RSDDiagnosisCST View Post
Hi there,

This is the first time I have ever been on a forum. I am 34 years old, female and was diagnosed with RSD in May 2007. Interestingly enough, it was caught early by an orthopedic specialist at Georgetown University Hospital. He referred me to a anesthesiologist for further help. It should be noted that I was very physically fit, ex elite gymnast and distance runner in college.

The condition effected my right foot and ankle. After ruling out other things, as well as some diagnostic tests, the diagnosis was clear. My physicians started me on pain medications and it took several attempts to find a combination of medicines that worked. Lyrics was the absolute worse as far as side-effects and made me extremely tired and in a fog. For someone who is very fit, I found this to be almost as bad as the disease. The combination that ended up working for me was Celebrex once a day and 10mg of Percocet when needed. In addition, I was given 12 weeks (1x a week) of a lumbar nerve blocker. My leg and foot was confined to a walking cast which was only to be taken off at night. I wore this for 9 months.

Needless to say, my RSD went into remission. I have had relatively no issues since then. Recently I have recognized some symptoms and have become very concerned. Not to mention, I live in Atlanta now. I do not have any resources as far as physicians are concerned. I don't even have a primary care physician yet. I really need someone who will understand what worked for me the first go around. I have heard horror stories about people who were talked into surgery and other experimental treatment.

At this stage of the illness, I would prefer to not have anything too drastic or invasive. The injections in 2007 were bad enough. I am still very active (or until) recently), training for 10ks and sprint tri's. Of course my health comes first, but I am a huge believer of good diet and exercise. If I am not able to train, I am scared of becoming depressed and feel that my spirit will let the disease take over. Most importantly, I need a specialist who will understand the athlete component. That perhaps I cannot run at the moment, but that swimming could be an alternative...etc.

Hopefully this makes sense and there is someone else out there who has a similar philosophy or experience. I am very saddened by the stories of people who have been plagued with this awful disease. I wouldn't wish it on my worst enemy!

Please feel free to reply and ask questions and/or give me any guidance. Thanks, Courtney
Hi Courtney, I'm sure you are very concerned about your recent symptoms. May I suggest you go to the RSD Forum here on Neurotalk. That is where you will get the most support and information on RSD.
I have had RSD since 96 and can relate to your concern over the possibility of losing your athletic life. I certainly miss my old athletic lifestyle.
One good thing is that you had a good remission. So with proper care, perhaps that will happen again, if indeed this is a re-occurence.
Have you found a good RSD Doc? Are you in PT? Swimming in warm water was something that really helped me along with PT to regain mobility.
Hope to see you on the RSD forum here at Neurotalk. loretta
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Old 02-07-2013, 02:38 PM #4
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Smile Hi Courtney!

Welcome!

You've sure come to the right place for support and understanding and also lots of good info on RSD. Loretta is right, the RSD forum if full of folks just like you and me and there are so many caring people there.

Here's the link to take you there:

http://neurotalk.psychcentral.com/fo...aysprune=&f=21

I know what you mean about the depression. Chronic pain and depression go hand in hand in alot of cases, especially if one is pre-disposed to depression (like moi )
Neurotalk has a forum for just about everything, that's what I like so much about this place.

Make yourself right at home, friends are on the way!

Caring,
Rae
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