I just posted on the TOS site so I thought I would also post here. I am so confused right now. My doctors are not agreeing on what is going on with my right arm. My vascular surgeon says I have developed RSD from TOS. My neurologist agrees but then when she saw me she was not sure because she could touch my arm. A doctor who just did my EMG said I have sympathetic pain on the right side. My primary doctor is not certain it is RSD because I do not guard it in any way. He thinks it is pain from TOS.

At times it feels like RSD except I can touch my arm and neck and in fact touching feels good. It distracts me from the pain. That was not the case on the left side. I could not even let a shirt touch that side for over a year. So I don't know. My hand does get really hot, but does not change colors like my left side did. The left turned purple and grew dark hairs initially. The right never did - just got hot, sweaty and lots of achey, burning pain. Could this be RSD?

I have always had hypersensitivity with my RSD...and no sort of touching ever feels good on my RSD areas.

BUT...I can say from my own experience that my areas of spread are not exactly the same as my initial RSD site. They flare at the same sorts of things but where as my ankle gets dark purple and red and swollen...my spread areas get color change in the form of a light red/pink (sometimes a dark red with a VERY bad flare) that almost looks like I have a sunburn all over. My initial site...the pain feels a little different but I think that's mostly because it's still focused on my ankle (a fairly small area) and my spread areas in my upper body the pain is more spread out. I also have swelling in my spread areas all the time (though it gets worse with a flare) and at the initial site only when I have a bad flare.

I've also heard that for some people, firm touching or pressure is not an issue with their RSD but it's more the light touches that cause pain. They can even get some relief from compression wear. Not my personal experience...but there are people out there with RSD who say it.

Remember that everyone is affected differently with RSD. You do not need to have ALL the symtoms to HAVE RSD. So it COULD be RSD...or it COULD be something else.

BTW...I do not guard my RSD areas in any way but that's because I know guarding is bad. So while it is understandable when you are looking for an initial diagnosis to guard...once you know the RSD diagnosis you may be less inclined to guard (even if you don't really think about it). Or do you think you are not guarding because you don't have the hypersensitivity? Either way...it's not a sure indication one way or the other.

I can agree with this, because i personally get more pain from a slight touch than a more firm touch, but they both hurt. Its like different grades of sandpaper..

I don't want anyone or anything to touch my ankle, and i guard it all the time! I guess its sort of a habit now since the inital injury! And because its in my outer right ankle the worst im so afraid someone is going to hit it and then i will want to choke them!

My ankle and foot are a "no touch" zone. Its like being electrocuted when touched.... I cringe just thinking about it!

Yes, it is still not pleasant to touch my initial site in any way, light or firm pressure. But the other side is okay with either. I just tried a very light touch and it was no problem. I am starting to suspect it is more TOS related, but the hot, sweaty hand just does not fit the TOS symptoms. It sure hurts just sitting at the computer but if I go sit on the couch or recliner and support my head, I can slow the pain way down. But the burning and heat continue. Weird.

My original injury was right foot and I don't like anything touching it. My left foot which also as many of the same symptoms (swelling, burning, turns colors, and toe nails turned yellow now back to clear) but I can touch. Another symptom I have is running cold water through out my body. I can only assume that all of this is related. Because my pcp doesn't know what else it could be.

The more elevated my pain level, the worse my effected limb responds to sensation--being touched, clothing and sheets, wind, vibrations, etc. There are times that I can manage medium pressure by others such as massage therapists. Very light touch and hard pressure can both cause not only temporary pain, but significant flares. I find that I am able to touch the area without as much pain, but it causes color changes.

My initial site is my left wrist/hand (caused by a botched wrist surgery 5 1/2 years ago). In that wrist/hand, I have all of the symptoms...some worse than others at times...including the deformity. I'm pretty stubborn and have a high pain tolerance, so I began working with it as much as possible because I was left handed before. I would often gently rub the area, trying to get used to the pain and build up a tolerance. I definitely think it hurts less if I touch it than if someone else touches it.

The areas where RSD has spread don't have all the same symptoms. They all have the burning pain to some degree. Abdomen mainly when rubbed, upper arms mainly when rubbed, legs almost like a slow pulsating burn where it's intense then slowly calms then grows intense again, and my face is starting to burn more and more both with and without touch. Discoloration varies as well. My legs are more splotchy and discolored if I have been sitting or standing, but when I prop them up in there recliner, the colors starts to become more normal. I was asked a couple days ago if I got sunburned because they said my face looked like it, but I hadn't even been out.

So I guess to answer your question, it could definitely be RSD beginning to spread. Hope you get some relief.

well it hurts no matter who it is, but I've noticed If I touch the area I can tolerate it better and if I know some one is going to touch it its not as bad as if I don't expect it.. I think its because Im prepared for the pain...