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Originally Posted by Nanc
Hey Bram, glad the link worked for you. I was happy, for the most part, with the story. I thought that they spent more time on this one than they do on some other stories. Yeah, I wish they would've dove in a little deeper too.
It is funny that you talk about RSD vs. CRPS. I was showing the story to my husband last night and said to him that I was shocked that they used the term RSD so much. I am one of them that uses that term more than CRPS. It is because RSD is what I was diagnosed with over 22 years ago and it is also the term my doctors use too. Old habits I guess...
I noticed Kathy's dr and Dr Prager both used CRPS and Dr Stork used RSD. I do wish Dr Stork would have explained the names as it can be very confusing to those not familiar with the name chan
And to have a whole team helping you?? How can you make that happen?? Finding a good PCP AND a good PM dr is near impossible!
Nanc
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Hi. Good subject. RSD was named in 1985 after Sydocks and Causalgia names.
The supposed reason for changing the name was due to some doctors did not see dystrophies. However, wait several years, and you will see dystrophy.
It is correctly named with dystrophy and the sympathetic nervous system. It is a neuro disease. CRPS turns it into a pain syndrome.
For those of us who went through the name change at that time it was a positive change. This is not.
We are just getting name recognition for RSD as a neuro disease, and now we loose ground.
How do you think people that have MS and parkinsons's would feel if after most of their life, the name gets changed to some pain syndrome ?
RSD is between MS and Muscular dystrophy. Yes, there is pain, and yes it is complex. However, it is more than a complex pain syndrome. So it is taking us back several steps, as well as now people need to say they have RSD/CRPS. Non of us are enjoying this name change and set back.
We as a group should be standing out ground, and writing whoever cares to keep the name the same. changing the name is not progress. We need hyperbaric chamber oxygen treatment. RSD is not a listed condition.
Were need name brand Klonopin to sedate the nervous system. Not covered.
MS and Parkinson's for example have treatments and medications specifically approved for those dis-eases. RSD none.
Pain doctors are trying seizure med's with horrible side effects. The best medications are gone or not available here in the USA.
Changing the name is mass distraction instead of progress.
No hurt feelings. We need to stand together as a group with 1 recognized name.