Mine spread from my left arm to both arms and legs...the docs tried to say over and over that it wasn't a spread and finally they believed me. I hope yours hasn't spread but keep advocating for yourself and don't let them make you think you are crazy. What is happening is real to you and that is what matters!
Jennelle

Hiya Jennelle,
Great to see you back!

It's true what you say about doctors.
If they do choose to treat you, and don't know (anything) about RSD, then, they're very afraid, and almost defensive. So, caution is their approach, and they take SO LONG to get past the conservative treatments, when actually, many of us need much more Aggressive treatments, meds, etc., EARLY ON!
These doctors are in a bad cycle, we need treatment ASAP, and they lolligag around, with us, because they're afraid! Meantime, this can get worse, and become permanent!
This is the cycle I went through, and now 26 years later... I Know I was used, by some unskilled doctors! My first Ortho, (I got this on tape, too), accused me of malingering! I said, sorry Doc, your hot pack's ain't helping me! So, he sent me to a psych, and I started the 7 year search for a dx.

We are at risk of being their "test dumby" if they've not kowledgable of rsd. They're interested and want to see what's all the fuss about..
That does NOT make them a good RSD doctor!
So, be careful of this kind of "mistreatment".
Ask them the Hard Questions!

pete
asb

First off let me say that there is medication that is sometimes taken in tandem with an antidepressant that can cause alot of redness burning stinging pain and heat... and darn it all can I remember the name.. begins with a T? I will post back when I remember it..

However:
I wasn't believed either, thought I was going crazy bugs in my skin, sunburns..
I was looking back over my WCB notes today and I noticed that I first reported the full range of spread symptoms throughout my whole body in early November of 2005 and I had only had my injury the end of May of in that same year..
Thats less than SIX MONTHS!

Why is the CRPS spreading?
What is diffrent for those of you who have no spread?
What invasive treatments have we had?

ICE?
TOO AGRESSIVE PT?
SURGERY?
CASTING/SPLINTING?

~~~~~~~~~~~~~~
I remember the drug I think it is Thalomine? it makes you turn real hot if you put your hands in hot water too, we had to bring a friend out side and hose him down with a garden hose after he acidentaly doubled up on his dosage one day.. he turned red like a beet and got real hot... he said he was burning up inside on fire.. but he later said that normaly he just felt an ocasional burn here and there like a sunburn.
So well I checked my meds when my burning started let me tell ya.

Anyway I am sory you are going through this Wolf, and all of you that are just going through this now.. Be strong and believe in yourselves, I thought I was going nuts and my doctors were willing to help me think that was so..

Don't let them make you doubt yourself.. write down what you are feeling as it is happening.. write a journal and bring it into your doctors apointments.
That is the only way my doctors finaly saw the regularity of it all.. and finaly the signs of spread started showing too.. but my journal was what made all the diffrence in the world when it came to doctors seeing the real picture.

First off let me say that there is medication that is sometimes taken in tandem with an antidepressant that can cause alot of redness burning stinging pain and heat... and darn it all can I remember the name.. begins with a T? I will post back when I remember it..

Then there is what my doctor liked to refer to as referred pain.. I never understood that one.. but aparently the RSD pain can echo somewhere else but aparently it's not the same?.. I am afraid just figured it was something they said to deny and belittle what I was feeling at the time, but there is information on refered pain out there.

When it came to my spread it was quick and I wasn't believed either, thought I was going crazy bugs in my skin, sunburns, cramping..

I was looking back over my WCB notes today and I noticed that I first reported the full range of spread symptoms throughout my whole body in late October of 2005 and I had only had my injury the end of May of in that same year..
Thats less than SIX MONTHS!

QUESTIONS:
Why is the CRPS spreading?
What is diffrent for those of you who have no spread?
What invasive treatments have we had?

ICE?
TOO AGRESSIVE PT?
SURGERY?
CASTING/SPLINTING?

~~~~~~~~~~~~~~
I remember the drug I think it is Thalomine? it makes you turn real hot if you put your hands in hot water too, we had to bring a friend out side and hose him down with a garden hose after he acidentaly doubled up on his dosage one day.. he turned red like a beet and got real hot... he said he was burning up inside on fire.. but he later said that normaly he just felt an ocasional burn here and there like a sunburn.
So well I checked my meds when my burning started let me tell ya.

Anyway I am sory you are going through this Wolf, and all of you that are just going through this now.. Be strong and believe in yourselves, I thought I was going nuts and my doctors were willing to help me think that was so..

Don't let them make you doubt yourself.. write down what you are feeling as it is happening.. write a journal and bring it into your doctors apointments.
That is the only way my doctors finaly saw the regularity of it all.. and finaly the signs of spread started showing too.. but my journal was what made all the diffrence in the world when it came to doctors seeing the real picture.

Thanks for the reply....

I haven't taken any of that...so far only amitriptyline, prednisone for 6 days, and more recently lyrica. And, at times, this gel containing ketoprofen and small ammounts of other meds.

What appears to have set it off in my case was saoking my foot in coldish (55-60F) water. I'd done this repeatedly in the past when my foot was hot and burning and the veins were all engorged, and it always worked. The foot would be kinda stiff afterwards but running it under a warm faucet always took care of that. This time, probably because my RSD was becoming more virulent, my foot went completely stiff and stayed that way. The warm faucet helped a very little but then I overdid it and caused part of my foot to swell up and get very red and inflamed and painful.

Anyway, I started feeling some spread into my lower legs right as I was doing the cold soak. Probably the intense stimulus of cold sensation excited the defective nerves so much that it made it spread.

This is where the relative lack of pain in my RSD probably nailed me. If I were like most RSD victims, I could never have tolerated doing something like that to my foot. Also its probably tricked me into thinking I have a mild case, when the other effects (stiffness, vasodilation/vasoconstriction) have probably been pretty bad for some time by now.

Alnother theory...bad medication...you see, my last jar of the ketoprofen gel had been stored in too much heat and the gel had separated from the meds. The pharmacist had told me it was fine, just stir it all back together, but....
My first instance of spread (to my other foot) was a month ago, and in retrospect I had been using that gel a lot at the time. I also started feeling fleeting odd sensations in the rest of my body at that time. And more recently, the full body symptoms didn't really take off until I used the gel on the new burn/swelling...it had a really weird effect, got very inflamed and swelled up really fast and I got a weird intense electric tingling that made the toe jerk back and forth. Next morning, I had the symptoms all up both legs and also upper body.

Anyway, so its been a real comedy of errors on my part here....