Saturday, September 10, 2016

I Have CRPS, NOT "RSD:" Why I Refuse to Use "RSD" & Question Those Who Do

I’ve been often asked why I refuse to use “RSD” when talking about my CRPS or why the term bothers me so much. Yes, I cringe every time someone mentions RSD as if it is still around.  But I have very good reasons for doing so and this is why. 

MYTH: CRPS is also known as “RSD,” “CRPS/RSD” and “RSD/CRPS”
(Partially True, yet equally misleading: CRPS formerly known as RSD)

WARNING!  This issue is VERY controversial.  I’ve actually received “hate mail” for this one due to the strong opinions and feelings on this.

 To understand, you have to know the history of CRPS. 

Reflex Sympathetic Dystrophy (RSD) was among SEVERAL conditions that became Complex Regional Pain Syndrome (CRPS) in the early 1990’s.  Reason being, RSD affects the Reflex Nervous System which is only part of the Peripheral Nervous System while CRPS has been proven to affect both the Central & Peripheral Systems.  RSD only describes a select group of symptoms in the later stages of CRPS.  Other conditions that became CRPS include:  Causalgia, Failed Back Surgery Syndrome (FBSS), Regional Pain Disorder (RPD), Chronic Pain Disorder, etc.  All of which can exhibit different symptoms while overlapping others. 

By the old definitions, someone with Causalgia would not necessarily have the same symptoms or treatment plan of someone who was diagnosed with RSD.  If a doctor is treating only RSD, they are missing many other symptoms and, in turn, treatment options.

So why is the term “RSD” still being used?  This one is driven primarily by special interest groups and doctors who aren’t up to date on their education.  It’s sad, but doctors actually look up conditions that they’re not familiar with on the internet and medical networks.  Since little is known about CRPS, this means that special interest group websites “pop up” first on their search.  RSD has been around for a long time, so all the outdated information is still there.  Even support groups refuse to drop “RSD” and have actually incorporated it into their sites as “RSD/CRPS.”   That simply isn’t true.  That’s like referring to the flu as just a runny nose or “Runny Nose/Flu.”

With new information finally coming out thanks to CRPS awareness efforts, many sites are finally starting to reflect that CRPS was formerly known as RSD.  Again, that’s only a partial truth.  While RSD does describe a set group of symptoms and causes in Type I CRPS, it doesn’t, however describe them all.

You’re probably wondering then, how can a name cause so much trouble? Simple.  If a site is based on information dedicated to RSD and the symptoms included with it, a person who is not symptomatic of RSD (but actually has CRPS) may be driven away and left to suffer on their own. 

I was one of them.  I was diagnosed originally with Causalgia, FBSS and Regional Pain Disorder stemming from a spinal cord & shoulder injury.  I was actually told that I do not have RSD because of those conditions when in fact, they were ALL CRPS.  I just didn’t have the symptoms of RSD including the hot flares, color changing skin, etc. and my pain affected multiple parts of my body, not just the injured areas.  I did later develop those conditions as a result of my CRPS going improperly treated for so long.     

I finally found a doctor who put all the puzzle pieces together and informed me about CRPS. 

Unfortunately, it took longer to find an online support group.  I would share my story, seeking information, and would often be told: “it doesn’t sound like you have RSD,” or “those treatments are wrong for your RSD/CRPS.”

Well….DUH! I never had RSD.  I’m not symptomatic of RSD.  My doctor is NOT treating RSD.  I will NEVER have RSD.  Treatments for RSD, like Ketamine Infusions, actually make my condition worse! It may work for some people, but given my symptoms, my treatment has to be different.

Now some sites still have RSD in their name because they’ve been around before it became CRPS.  For whatever reasons, still have not changed their names to reflect that or are holding on to the name due to financial reasons (ie: cost of changing domain name, cost of rebranding organization including copyrites).  At first, some groups held on to RSD because CRPS was new and older patients would recognize them.  But, it’s been over 20 years and now it’s negatively new patients who desperately need help.    

I often heard from other patients that they’ll use RSD when talking to doctors because CRPS sounds like a psychological condition or mental disorder.  Or worse, their doctors believe CRPS is a psychological condition and that RSD is not. Yes, it is true that some doctors still believe CRPS  is psychological, but my question to those would be:  Why are you still using that doctor when they clearly aren’t up to date on their education? 

I have serious concerns with ANY doctor who uses RSD (or any of the old outdated terms for that matter) when describing or treating my condition. I actually have switched pain doctors over that issue because I wasn’t getting the quality treatment I deserve.  Do I really want someone treating me based on information that’s over 20 years old? Not a chance.   

As a community of CRPS patients, we need to work together and put old, outdated information behind us and help bring the medical community up to date. There are so many people out there who have CRPS and need help, yet they don’t know how because of issues like this.   

Honestly, this is one tough issue.  I’ve seen online arguments over it as people hold on tightly to something their familiar with, even when it becomes obsolete.  We need to help each other and understand that we’re in this together.  Just because one person’s symptoms may not match yours, doesn’t mean that they don’t have CRPS or that they’re suffering any less.  The last thing we need to do is to push away people who need help over an outdated condition.

My challenge to you all is to drop “RSD” and help all CRPS patients, no matter what symptoms they have or why type of CRPS they fall under.  Instead of focusing on one, small part of CRPS, we can learn from it all and finally move forward to better treatment and maybe a cure.