RSD leads to Central Pain Syndrome?
 

Hi, everybody:

I would like to know if the RSD I have in my left knee could "turn into" Central Pain Syndrome. The anesthesiologist who put me out for my first Anterior Cruciate Ligament (ACL) reconstruction said it could happen in some people. What do you know about this? What are your experiences of RSD sufferers with Central Pain Syndrome? I know many health conditions could lead to Central Pain Syndrome, but is this the case with RSD? Thanks for your replies and information.

Priscilla

Hi, everybody:

Oh, I just wish I could get if only one reply to this message. I spend my time wondering where I might have gotten my Central Pain Syndrome from and my son spends his time worrying and crying. So, pleaaaase help! Please! I am begging you! I feel so sad and desperate! Thanks.

Priscilla

Hey Priscilla,

Really new to this syndrome so I might be wrong but my understanding is that CRPS might spread from just the sympatetich nervous system to the whole nervous system.

Someone please correct me if im wrong.

Nigel

Hi, Nigel:

Thanks for your reply.

Quote: "My understanding is that CRPS might spread from just the sympathetic nervous system to the whole nervous system".

Are you saying that when CRPS has spread from the sympathetic nervous system to the whole nervous system (called CNS or Central Nervous System), that is when CRPS is then called Central Pain Syndrome?

I wonder what the differences are between CRPS and Central Pain Syndrome when it comes to their symptoms and diagnosis.

Thanks again for you reply and information.

Priscilla

Hi, everybody:

My suspicion is that when the RSD pain goes from SMP (Sympathetically Maintained Pain) to SIP (Sympathetically Independent Pain), that is when a person goes from having RSD to also having Central Pain Syndrome. Am I wrong?

hmm
 

sounds like you are on the right track. My RSD went from Symp. maintained to centralized after a hip replacement....

Hi, Debbiehub:

I am the kind of person who needs to know what is going on with her body. I also need physicians to put names on the various syndromes and diseases I suffer from; it helps me feel they are not in my mind, that is, that I did not make them up.

I am happy you think I am on the right track; I feel more reassured and closer to finding the answers I am looking for.

Quote: "My RSD went from Symp. maintained to centralized after a hip replacement." So you have Central Pain Syndrome on top of RSD, just like me. May I ask what kind of doctor made your diagnosis (pain management physician, anesthesiologist, orthopedic surgeon, neurologist, etc.)?

Thanks again.

Priscilla,
You should really subscribe to the RSDSA.org site & get the monthly newsletter in the mail. If you have not checked them out yet you need to. They provide the most up to date information.
CRPS is the latest name they have given RSD because they have found evidence that it effects more than just the Sympathetic Nervous System.
They are always learning more but it is important for YOU to be on top of it because doctors who do not see patients regularly with this don't know & you can easily be told you have something different or that it is all in your head.
check out RSDSA (dot) ORG

I think some importance too is it may mean different treatment. I know for me since procedures were making me worse my pain doctor/anestesolgist felt the pain is now in my brain and not just in the spine. That is why he put the scs on hold cause he was fearful it would make my pain worse.
For me it was my pain mangement/anestesolgist. To me a pain doctor should be both. I also though was dx from my neurologist.
Hang in there and feel better

Priscilla, I sent you a PM....

Hi, everybody:

DarlaDaniels, I heard about RSDSA, but I did not know there was a monthly newsletter to which I could subscribe. When you talk about getting this newsletter in the mail, are you thinking about the mailbox or e-mail? If it is e-mail you were talking about, then no problem, because I have a yahoo e-mail account, but if it is the mailbox you were thinking about, I am not sure at all RSDSA will be willing to send its monthly newsletter to my P.O. Box, because I am not in the USA at the present time and I do not know when I will return there. It would be too expensive for RSDSA to send its newsletter every month to the foreign country I am in.

Even though I know RSD is now called CRPS Type 1, I continue calling this syndrome RSD because I have been used to doing it for almost the ten years I have been living with it.

Quote: "Doctors who do not see patients regularly with this don't know & you can easily be told you have something different or that it is all in your head." You are so right; I have known countless doctors who tell me my pain is all in my head or, in their own words, that I have "psychosocial problems".

Daniella's quote: "I think some importance too is it may mean different treatment." Are you saying the treatment will change if the pain goes from being sympathetically dependent (SMP) to being sympathetically independent (SIP)? One thing I am afraid of above everything else is not the RSD or even the Central Pain Syndrome I have, it is that my primary care physician takes away my fentanyl patches by weaning me off or by cutting me off.

Quote: "I know for me since procedures were making me worse my pain doctor/anestesiologist felt the pain is now in my brain and not just in the spine. That is why he put the scs on hold cause he was fearful it would make my pain worse." The fact that your pain is now in your spine and brain (the central nervous system) means that you have Central Pain Syndrome besides also having RSD?

Daylilyfan, I will check my e-mail account to see if your PM is there. I an new here, so I am not sure where to find a PM.

Thank you, everybody, for your kind words. I will never be able to thank you all enough, the way you deserve. :grouphug: I feel sooo depressed these days, especially since I learned I have Central Pain Syndrome as well as RSD.

Priscilla

Look in the upper right, where it says "welcome" in bold type, and your name. It also says "You last visited...."and gives the date. Right below that, it will say "Private Messages" That is what "PM" stands for. You should see "Unread 1." or more than one, if someone else has sent you a PM also. If you click on the words Private Messages, you can get to the messages area. Sending a private message is one way to give someone links and other info.

Kitty yes that is what I was told that sometimes SIP and SMP pain are treated different in terms of procedures etc. Not always but like I stated why my pain doctor felt my pain increased with certain procedures and may with the scs.

Even some very well known RSD doctors will state things about the mental. I had a very well known rsd doctor from Cleveland Clinic state this to me. I said what happens if X procedure makes me worse he was like well we send you to see a psychiatrist. Ok now I know it is so key to cope with our condition so I do a see a psych but when my pain gets out of control high I need more physical care.
Hang in there