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 07-13-2007, 02:42 AM #1
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I have to put in my two cents. I feel as though this kind of article could be a negative thing for RSD patients.

For those people reading this article, should they come across someone who does truly have RSD, they will now second guess the person and say, "oh, you just need to see a chiropractor."

It's having to go around and convince more people that this problem truly does exist.

When I had my accident, I bruised my elbow bone. It did NOT feel like my knee, and now my hip, feel. It felt like a bruise, a deep bruise. My arm and all were sore. It took a couple of weeks, or more, to heal. But NOT many many months/years. I saw a chiropractor, he said he didn't even want to touch me, not until he saw an MRI or X-ray, neither of those show nerve problems.

I am happy that she had a different diagnosis than RSD. What I was hoping to read after I saw her post was what helped her get it into remission, not be made to feel like it's possible we might have something else wrong and were misdiagnosed.

PLEASE KEEP IN MIND-THIS IS MY OPINION. I am not trying to rustle feathers.
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Old 07-13-2007, 11:13 PM #2
Goodn'Plenty Goodn'Plenty is offline
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Lisa ,what you went through is absolutely horrific
I think what you are doing as a result - ensuring that people get good quality medical care is great/necessary and it shows that the trials and tribulations of life can bring us a new purpose and life goal.
I think the disconnect here comes from the fact that RSD is one of the most under diagnosed and/misdiagnosed conditions in the medical community today.
Many of us have gone from one doctor to another without getting any answers to our litany of symptoms; and sometimes much to our surprise come away from these appointments with blank stares of disbelief from these so called experts; and worst case scenario - that this is all in our heads and that we are an hysterical bunch of women( with all due respect to the afflicted men).
So for this little known disease to finally get some press ,and its content is not about it being horribly under diagnosed ,or horribly underfunded ,or just being plain horrible ,but because it was misdiagnosed not once but twice, which I am sad to say is not the norm with RSD well just doesn't sit well with those afflicted.
I am sure you can understand why it is just a little bit frustrating for those that want their stories to be told who feel that your one in a million misdiagnosis' of RSD might in some way do a disservice to a disease that is so little known-so little known that doctors can't even diagnosis it;so little known that newspaper stories make it sound that misdiagnosis is an everyday occurrence!!!!

with much hope and respect that you can help us change this situation as you have been in the trenches even if they were "faux" trenches

GnP
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Old 07-13-2007, 11:30 PM #3
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Some of us should all get together and go "Public" with this beast on the oprah Winfrey, Dr. Phil show!!!! let the "outside" world and let some idiot Dr.'s know what we really go through day in and out!!!! :0(
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Old 07-13-2007, 11:41 PM #4
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Quote:
Originally Posted by Desi View Post
Some of us should all get together and go "Public" with this beast on the oprah Winfrey, Dr. Phil show!!!! let the "outside" world and let some idiot Dr.'s know what we really go through day in and out!!!! :0(
Definitely NOT Dr. Phil. He did a story on homeschooling and the lady who went on was on a message board I was on. He misled her and the other homeschooling moms on there. If he believes ONE way, your way won't count and you will come across looking HORRIBLE. He packed the audience with young adults who most didn't have kids yet, let alone done with their own schooling. I don't support Dr. Phil at all.

I subscribe to Experience Life Magazine and submitted a request for them to do a story on RSD/CRPS. They seemed genuinely interested. Magazine articles are a good place to start, as many of us read all types.

http://www.lifetimefitness.com/magazine/
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CHRISTINE
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I AM NOT A DRUG SEEKER,
I AM A PAIN RELIEF SEEKER.
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