huh.. interesting set of symptoms. they seem to line up(BUT) one of the things about RSD is that it is only a positive dx when all else is exhausted. Now I haven't seen many cases that do not involve pain but yes it is true not all symptoms show up on red patients and pain isn't always 8,9, or ten some are 1-4 with is uncomfortable . I have not heard ever that cold water or ac usage soothed red symptoms though. that is odd. I hope for your sake you can find a dr to take the time to dx you, but treat yu as it is RSD just in case. this is an odd beast so like they said before me anything is possible. i see a neurologist, spine specialist, orthopedic, shrink, pain management and vascular surgeon. I suggest you see a vascular surgeon, neurologist and orthopedic, all of these areas are noticeably affected, on film and by naked eye. good luck. and I pray that it is a more simple issue and one not very serious.

I had knee surgery that resulted in a cold foot and sensitivity to temperature change as a child, which continues to this day. There was seemingly an abnormal amount of pain in the knee for about 8-10 years. No pain in the foot accept that caused by the cold. Some atrophy to my calf and foot, that still exists. I went through nerve testing at the time and was given the option of meds or spinal surgery, both of which I declined.

Fast forward nearly 20 years, and after a couple hand surgeries, I developed RSD.

I've discussed my history with several docs. The consensus seems to be that perhaps I had a predisposition to the syndrome.

If you require surgery in the future, requesting a block right before hand would be a good idea. Avoid elective surgery at all costs. If you can avoid using ice, that's probably a good idea. If you begin experiencing burning pain in any area of your body, treat it like an emergency...and so long as you remain pain free, count your blessings.

painman...thank you so much for the suggestions on which type of doctors to see. Sometimes I feel like I need a medical degree to navigate all this stuff. I actually had podiatrist tell me I know more than many of his students!

LitLove - so can you help me understand the 'block' you are referring to. I most likely will need another surgery in the future as I still have not fixed my original pain that caused me to have the previous 3 surgeries. I likely have a hematoma in my calf as well as possibly a sural nerve entrapment. Anyway, you said I should ask for block before the surgery. Can you elaborate on what that means?

Also, I guess maybe I do have some pain, but it's hard to say b/c my original pain that isn't related to this is so great. It's more of a discomfort but only when the flare-ups happen. And, 100% of the time take it to the bank, if i put my foot in cool water, the red will be gone in under 2 minutes. Same with A/C.

We were in Antigua and the flight there caused major issues and a flare-up. It was quite hot and very humid and every single day I would have a flare-up. If I could hobble to the ocean and get my foot emerged, it was gone almost instantly. Some days I just stayed in the water for hours b/c it was the only time I felt good.

The idea is to use a Block (in my case stellate ganglion, in your's--a lumbar sympathetic, I believe) as a preemptive strategy, directed at the area that will be operated on.

For example, I had additional surgery after the onset of RSD, and I underwent a SGB immediately beforehand. The block worked so well that I thought the surgery had resolved my pain issue, unfortunately that wasn't the case. It made my post surgical recovery very easy. It's impossible to predict if I had not had the block, that I would have exacerbated my RSD and possibly caused spread, but with RSD, it's always better to proceed cautiously. A block is no guarantee that surgery might not make things worse.

Traditional RSD pain is very severe. If you can recall how intense the pain is stubbing a toe? Fortunately, that only lasts seconds. RSD pain is a similar type of intense burning pain, but it is constant, and over a larger area... Before I started on the right meds, I sometimes fantasized about having my arm amputated (not uncommon)...

Hi J,

I wouldn't say that you DON'T have pain when questioning if it this indeed RSD. You did say you have discomfort with this. That's just pain that is more mild. Could you have a high pain tolerance ?

I've done 'science experiments' on my son. Many years ago, he stepped on a toothpick and got a cut on his foot. He pulled out the toothpick, put a bandaid on it, and told me about it later. I looked at it, couldn't see any splinters, added neosporin, and called it a day. Few days later, it was swollen but the cut was healed. Basically.....4 months later after 4 courses of antibx including 1 for MRSA, multiple daily footsoaks, periods of 4x day squeezing the pus out.......One day I am pressing on it to express the drainage and 3/4 of a toothpick came flying out. I would think that would HURT. He said, "Meh, sometimes it bothered me a little." Same kid also broke his wrist as a child and never complained, until I noticed redness and swelling several days later. My 'science experiments' have been playing with my TENS on him. The settings where I feel a tickle and where I feel effective zaps, he can't feel at all. Settings that I find intolerable, he just starts to feel a tickle. That's a HIGH pain tolerance, if you ask me !

Good luck with finding answers !

Some RSD patients experience almost no pain.

Pregnancy has been reported to put the disease into remission or partial remission.

Well, whatever this is, is definitely not in any sort of remission. It's the worst it's been, but I dont' think b/c of the pregnacny. I think it's b/c of the heat.

Well, I saw a peripheral neurologist on Friday and he doesn't think it's CRPS/RSD. The reason he sited was b/c I don't have the pain component.

I'm wondering if it's a vascular issue. Next appt will be with a vascular surgeon and possible get a arterial dopplar ultrasound to check out the blood flow in the legs.