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. 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