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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hello,
I felt awful when I read your story. No, you are not a nut. Please don't ever think that. Thought you might want to know my story. In July of 07 I had foot surgery. Instead of getting better, my pain became worse. I cannot do medical malpractice, but my surgery definitely had a very bad outcome. First of all, I had never heard of RSD. I went to UCLA to basically see why I was hurting so much, and he told me that I needed a 3-phase bone scan. It's very specialized and must be done in a hospital. It's a scan done over a few hours. Needless to say, my left foot (surgery foot) literally lit up like a Christmas tree and my right foot was totally invisible on the scan. I was diagnosed with RSD on September 2nd, (UCLA called me at 3:30 with the news) and I've never had a block. I am fortunate to have a doctor who is a RSD specialist. He is a rheumatologist who also treats patients who have RSD. I feel very lucky and very blessed to have him, especially after reading some of the horror stories. He participates in many of the conferences and I feel confident that I'm getting the proper care. I take Lyrica and Cymbalta, but first I was given Neurontin and Cymbalta. The neurontin wasn't managing my pain well enough so my doctor suggested that we try Lyrica. These meds can do a number on our memories, on our weight, on our thinking and our ability to concentrate, but they can prevent further damage to our bodies. I don't think we have a choice, especially because of our pain. He sent me to a neurologist and they found neuropathy in both of my legs. After many, many blood tests trying to find out why, I was part of the 30% of the "we don't know why" group. My feet can really hurt sometimes, and I'm not able to walk for exercise like I used to do, but all my effort and energy goes to doing my best to try and manage this very painful health condition. I very much wish that I could turn back time and not have RSD, but I've had to accept it and treat it. I work 3 hours a day and I'm really trying hard to be able to keep this job. I love it and I've been doing it almost 10 years. I don't have a pain management doctor. I know that many doctors think that because our skin isn't blue or reddish that we don't have RSD. That is not a deciding factor when diagnosing us. I'm not red or blue, and I hope I never become red or blue. By the time those colors are visible, there's some pretty serious RSD going on. And, everyone is so different with how they react to medications, etc. What works for 1 might be horrible for someone else. And, I hear it over and over and it's very true. Early diagnosis is critical to treating it and hoping for a possible remission. I saw my doctor very frequently in the beginning. But, right now I'm able to put 6 weeks in between the visits and that's the longest we've done so far. I also take an occasional Vicodin, or 1/2 Vicodin sometimes too.
I can't remember where you're at, but try and use a search engine on your computer for RSD specialists so that you can get the proper care. I feel so bad that they only gave you a week off. Try not to give up. We're all here with you to try and be your support and friend during difficult times. There are some wonderful and great people on this board. I wish you less painful days and please keep us posted, ok?
Take good care, Deb
Thank you for your responses. I have a mild form of Cerebral Palsy and my pain started after a bout with MRSA. I decided to take a chance and see if my regular Neurologist could see me. My general practitionist thought that I could get better results with the university hospital because that would have more access to testing. Boy, was he wrong!! They were the ones who acted like I was nuts. So, I get in to see my neurologist this morning and she took one look at my leg(it was mottled and my toes were a little blue) and read my records throughly and she is almost positive it's RSD. I have all my testing next week, so in the meantime she put me on Lyrica, some pain meds and Lidocaine patches. I feel so much better knowing that someone is on my side and is trying to find the right solution for me. Thanks again~

Cindi:)
I also was diagnosed with RSD a couple weeks after foot surgery. I had a nerve block but in my case the gal that did it hit the spinal fluid long story short, after eight days in the hopsital, one spinal tap and finally the blood patch to heel her mistake I still have the RSD pain. I really don;t know if the blocks work or not. Kinda of scare to try another one. I was put on Lyrica for pain and burning.I went to a neurologist and a foot specialist all said I have RSD. I take darvon for pain (a stress fracture) on the same foot. If you get a doctor that understands RSD you'll be much better off. I learned alot about RSd by googling it. Its not a pretty disease but caught early your chances are much better at remission. Best wishes. And you are not nuts!!! You are a person in pain.
I'm sorry that you were treated like you were "nuts". I mean we feel bad enough because of the pain and if then you are told that "it's all in your heard", well that just makes everything worse.
Luckily my doctors did believe me. But I also had/have the coloring that comes with the RSD. And even now I still have my right foot and leg with the purple, reddish coloring along with the molting.
I now only see a specialist. She has treated many patients that have had RSD. Her exact title is physiatry doctor. They are experts in diagnosing and treating pain. They treat illnesses that effect the bones, nerves and muscles in our bodies.
I use to see her a lot but now I only see her about every eight weeks. She said that the damage done to me by the RSD and because it was not caught early enough is permanent. I take Lyrica, Cymbalta, and methadone for the pain. And even with taken all that medicine, my pain level is usually at a three. Which to me is wonderful. My doctor even told me in the beginning that her hope for me was to get my pain level to about a two or a three. But that I would never be totally pain free. I can live with it at three. At least now I am able to participate in my life a little bit more.





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