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| 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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05-21-2009, 06:46 AM
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AJ,
My RSD started in both knees due to a work related car accident. I was diagnosed almost 3 years into having RSD. Along with the RSD, there is damage to both knees and I have nerve damage in a part of one leg. The RSD is in both legs fully now. Maybe I understand a bit of what you're going through, though RSD in one person is never the same as in another, no matter where it started. We each have our own experiences. I have never had blocks but did have calcitonin, bisphosphonates (standard treatment where I live) and pain management through meds. I am going to be 37 this year. Last year, almost 13 years into having RSD, the RSD spread to both arms. This year September it will be 14 years. Welcome to the forum!
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All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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05-21-2009, 07:34 AM
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Just wanted to say thanks to everyone for sending out such a warm welcome.
I did not expect to find such a group! I have already learned a lot by reading your posts. I hope to send out a few questions soon. Thanks again!!  AJ
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05-21-2009, 11:12 PM
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Hi Aj, Have you been fortunate enough to find a Doc who has a clue yet. I have been through so many Docs over the past 6 years, I can't even count them. I hope that you have a good family support system. I actually don't, but I have some friends who listen, and of course this site and *edit* is also very good. I take Lyrica, Methadone and cymbalta. They work a little. Nothing is all encompasing though. Have you had the spinal blocks, cauterization, spinal stimulator? I have tried all of them and nothing works. I am miserable with pain.
Keep in touch. All the best and here's hoping all your days are painfree! Last edited by Jomar; 05-22-2009 at 12:43 AM. Reason: per guidelines |
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| "Thanks for this!" says: | loretta (10-30-2009) |
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10-28-2009, 05:06 PM
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Hi. My name is Kim, and I was diagnosed in January of this year. It started after I was injured in my left leg/hip area in October, 2008. I welcome you to our community, but wish we could chat about happier topics!
First, YOU ARE NOT CRAZY! I felt the same way. I live in Maryland, and have access to very good medical care (Johns Hopkins Hospital). I have been to eight doctors, so far, and will be referred to Hopkins in December. (When I get my permancy rating for Disability). I am currently seing a Pain Management doc, an Orthopedic, Neurologist and P.T. with accupuncture. I have been unable to work since the injury last year and Workers Comp. has been giving me a terrible time with my benefits. The problem I have now, along with the agonizing pain, is a reluctance from my Pain Doc to work with me on different meds. (Narcotics make me very ill, and I tend to vomit every day). I take high levels of Neurontin, which badly affects my memory, and Baclofen, which makes me sleep all day. I am running out of room, but I wanted you to feel welcome and not alone. Chat back!
__________________
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| "Thanks for this!" says: | loretta (10-30-2009) |
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10-28-2009, 08:45 PM
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Hi AJ,
I am not sure that you will "beat" what has all brought us together (although I hope you do!), but I am certain that if you hang in here with us that you will at least learn to coexist with RSD (as many of us have) and possibly even get to a point to where you control "it" rather than "it" controlling you! |
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| "Thanks for this!" says: | loretta (10-30-2009) |
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10-28-2009, 09:56 PM
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I, too am just recently diagnosed(Sept 2009 ) after a fall down the steps at work(Jan 2009) where I fractured my left navicular, I had surguery to remove the bone fragment.I showed symptoms of this monster as early as April/May.
My foot/ankle surgeon was the one who caught it shortly after the surgery and to my amazement apologized to me that he didn't catch it sooner. I was sent to a pain management doctor for and EMG and diagnosis. He diagnosed me with CRPS II. He placed me on Cymbalta, Lyrica, Opana, Lorazepam and Lidocaine Patches. Unfortunately for me, he doesn't know the up to date treatments, so he referred me to someone who does. So I feel the roller coaster ride has begun again. I have searched high and low for answers to questions that I had and found answers to questions that hadn't occured to me yet. This forum is a great source of both. I have found talking with someone that is dealing or has dealt with the same issues that I am having is helping with my mental status. I still get down as I feel my career as a chef is over but with luck I will go into remission. Good Luck to you and I would be glad to be a shoulder if you need it, I may need you as well. Sue Quote:
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| "Thanks for this!" says: | loretta (10-30-2009) |
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10-29-2009, 07:25 PM
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Welcome AJ
I like to daydream about having the energy to send scathing letters to all the docs who didn't get it, explaining RSD the doc who did make the dx, etc But...then I have a good day and decide to do something fun with my family or friends instead ! I try not to let it bum me out that most people don't 'get it' Thankfully, i have found one friend who really gets it, unfortunately because she's a CP'er too. |
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| "Thanks for this!" says: | loretta (10-30-2009) |
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10-29-2009, 08:10 PM
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Sorry to hear about your diagnosis but glad to have you here! I know tons of times my family and friends didn't understand and this is the place I went! I found having others who know what it is like is a big help! Good luck to you and I hope this site helps!
Jennelle |
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| "Thanks for this!" says: | loretta (10-30-2009) |
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11-01-2009, 02:53 PM
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AJ, I also wanted to welcome you to this loving and caring group! Even if you are newly diagnosed,we are all overwhelmed at most times with this misunderstood dx! I have had RSD for about 7 years now. Which started from a simple surgery. I had an operation for billaterl hammertoe's. The surgeon cut thru the nerve on my small L toe. Now I am full body RSD. Like everyone else said ask as much as you can and read alot! I was just in the hospital for a major flair up for about 3 weeks. I also cannot believe how many Dr's and nurses did not even know what RSD was! I actually was so sick of trying to tell every one about it I fianally told them to put in there cumputer(What is RSD?)So,yes you are right this is so misunderstood! Well hang in there ad remember we are all here for you!
 Breezy55
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