(Originally Posted By Leslie Coggin
to Living with RSD/CRPS at 7/25/2011
03:14:00 AM)
What's in a name? Well... a name is a definition of who and what
we are.
When I say that my name is Leslie and I have CRPS I am telling you very
explicit facts about myself. However a name came be ambiguous. A good
example of this is the name of the chronic pain disease CRPS - Chronic
Regional Pain Syndrome. This is the accurate name of the disease and should
be the one we all go by. Instead, people say RSD, neuropathic pain disease,
causalgia, neuralgia, or combine RSD with CRPS calling the disease RSD/CRPS.
Well.. it is time to clear the air because until we all use the same name we
will continue to fight an uphill battle for recognition and support. I
asked Jim Broatch of the Reflex Sympathetic Dystrophy Association what the
accurate name of the disease is. He stated to me that CRPS is the accurate
name and that RSD applies to type I of the disease. RSD is when the nerve injury cannot be immediately identified. CRPS type II is labeled causalgia and is defined as cases in which a distinct "major" nerve injury has occurred. The preferred terminology is "CRPS formerly known as RSD." Literature from the RSDSA talking about the pain disease; has this terminology on the front. So why don't we use the same name?
When I say that my name is Leslie and I have CRPS I am telling you very
explicit facts about myself. However a name came be ambiguous. A good
example of this is the name of the chronic pain disease CRPS - Chronic
Regional Pain Syndrome. This is the accurate name of the disease and should
be the one we all go by. Instead, people say RSD, neuropathic pain disease,
causalgia, neuralgia, or combine RSD with CRPS calling the disease RSD/CRPS.
Well.. it is time to clear the air because until we all use the same name we
will continue to fight an uphill battle for recognition and support. I
asked Jim Broatch of the Reflex Sympathetic Dystrophy Association what the
accurate name of the disease is. He stated to me that CRPS is the accurate
name and that RSD applies to type I of the disease. RSD is when the nerve injury cannot be immediately identified. CRPS type II is labeled causalgia and is defined as cases in which a distinct "major" nerve injury has occurred. The preferred terminology is "CRPS formerly known as RSD." Literature from the RSDSA talking about the pain disease; has this terminology on the front. So why don't we use the same name?
Personally, I think we use different names for the disease because the docs
who diagnose us use different names. We all need to get on the same page
because the use of different names causes confusion, impedes communication
and can ultimately inhibit awareness, support and fundraising activities.
We have no nope in changing this until every single one of us calls the
beast by its true name….. CRPS. I plan to make an effort... will you?
Just stumbled upon your blog today, hope you are still okay. I refer to my condition as RSD because I was diagnosed the first time back in 1980. That was the only name the doctors used. I was 20 yrs old and very lucky because it went away for 15 years. At 35 yrs old, it came back with a vengeance! The doctors still only used one name, RSD. This year is the 20th year since my second diagnosis. Quite simply, I was here first...there was no need to change the name of a syndrome that was already struggling to get recognition and funding for testing. The egos involved in medicine are enormous, someone wanted to have his way and damn the ensuing confusion. There is no reasonable explanation for changing the name of Reflex Sympathetic Dystrophy.
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