i am so sorry i havent been on here in about a week.. i have been busy with just life.. my daughter has passed her state final and now she is cna certified and now she is takeing her driving test, along with swimming and tball i am tired.

i went to see my pm doc today.. i have two one who gives me meds and another who does my blocks.. i went in for a follow up on the ketamine i did on may 1 i only got about 7 days relief and i told them to do more and hopefully i will get more relief.. that office is so insentive i asked them how much will it cost vs the hospital if i do it at there office and the p.a said i dont now anything about the money i just know how much i get paid and that is salary. he also then went on to tell me that i need to do the scs.. i said no. there are two patients in that office with rsd and that is me and someone else..
he said that the other guy just had his scs put in and he is off all his meds but. i then repled "his ketamine didnt work like you told me last visit" he looked at me and so no but his rsd is worst than yours..
his arm is so purple and he has bleeding sores... okay.. the p.a then said that he was in a far worst stage than me. i asked what stage do you think i am in?
he said stage 1..
wow... i was told at three months of having rsd that i was in stage 2 and this was by the doctor who dx me.

so my question is (finally huh) how do you know what stage you are in? thank you for your input.. i hope all of you are doing well and staying painfree take care michelle

There are no stages in RSD any longer. This doesn't follow a linear path from you having this, this and this from month 1-3 and then have this from month 2-6. Every person with rsd has multiple symptoms at any given time and they fluctuate all the time. No doctor or medical person who is up to date will even mention stages because there is no such thing anymore.

One great example is at the beginning it says the skin is hot and much later progresses to cold. Not true! The majority of those with rsd have the skin begin cold and stay cold. A minority start hot. See my survey results here.

Hugs,

Karen

Hi Michelle..

A good example of the stages of RSD can be found here

http://www.rsdinfo.com/stages_of_crps_rsd.htm

I believe that our stages can change at any time and go from two and back to one.. or from 4 back to 3 with whatever treatment we are getting, or if we are getting worse or better.. I was in stage 4 with heart and kidney involvement I think I am going back to stage 3 because of my lidocaine infusions. [reading up on the link I provided above stage 4 treatments are calcium channel blockers, Lidocaine infusions are calcium channel blockers]
Sandra

ps that person at the office WAS being insensitive!

michelle
first off congrats to your daughter !!!!
second like karent said there isnt any real stages . because i can go between hot in my arms legs every where to one arm is cold and the other is warm its weird. but it will/can do what ever it wants when it wants i have found out.
yea i think that the PA was being a you know what jacka** becuase he has no idea what he is talking about and let alone compairing one patient to another is very unperfessional IMO
maybe go back to the orignail doc that DX you because i dont think that in the beging of RSD that SCS should be used till there is nothing left to do..

hang in there
carrie

I agree that RSD changes back and forth within the stages. The immune system is compromised,IMO; thus, at a lower immune system time..a higher stage of RSD, and vice versa.

The whole idea of stages in CRPS has been largely discredited and all of the recent good quality research/treatment guidelines only refer to the concept of stages for historical reference purposes.

As more patients are followed more closely and more research is done it has become apparent that more patients don't follow this staging pattern of progression. I worry when I see current articles and information published out there that still refers to stages in CRPS as if it is still considered to be current medical thinking - that is a dead giveaway that the author isn't keeping up to date with the very latest, international medical opinion.

The RSD in my legs went undiscovered for almost three years (no diagnosis, no treatment, hellish pain and no relief) and my upper leg muscles by that time had atrophied severely, and a lot of other things were going on (nerve damage, bone loss, etc. ...)

thank you for your input and after reading everyones reply i do agree there are no stages.. my foot and leg changes all the time.. they want me to do that scs and every visit that is all that they push. it really makes me mad, i feel so firm in that i do not want the scs unit and they should do everything else for me instead of telling me that my only hope is the scs...

You do not have to resign yourself to the fact that the only thing left for you is the SCS. Who says it is? Until you have searched fully for other options, to your own satisfaction, I wouldn't go for the SCS. Don't let anyone push you into something that you really don't (yet) want. Don't do anything unless it is fully your choice. But I doubt you will convince them otherwise. That's why you have to become really proactive and search out other options, opinions, doctors.

Are there any other doctors you can go see for second, third opinions, ... ?

It is *your* body.

Never forget that. You have to live with whatever consequences. Not anyone else. That is why you have to stand behind every choice *you* make.

And,
all that's said here is great, I'd like to add.

Since all have agreed that rsd is always "changing"....
what possible stage(s) could you be in at any one moment.
Particularly when a doctor see's you, and declares it so?

It is what it is..

pete
asb