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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

I'm glad you all were able to link the reaction to the copper IUD!

Quite honestly, you've provided quite a few keywords describing RSD and some of the things I've personally experienced with RSD...

If you're self-pay, I would probably try to get another opinion from a different pain mgmt specialist. Is the PM MD regarded as "the best" in your area or one who specializes in RSD/CRPS? I know that this may be next to impossible to do if you're a workers comp patient, but maybe your surgeon could refer you to another PM MD if he disagrees with the diagnosis or lack thereof from the first PM MD.

About the skin and color of the skin - I initially didn't have super shiny skin, but comparing one side of the body to the other, the side with RSD is a different color from the "normal" side of my body. My foot only appears shiny when it's extremely stretched with edema, but otherwise I would say that the skin looks normal. It's only the knee that looks shiny most of the time. Again, side-by-side comparison almost always shows the side with RSD as appearing more pink/red.

I already described the angioedema in my previous post - that began almost immediately after a minimally invasive procedure. Yes, the constant burning pain is something that I experience, as well. I don't recall the burning sensation happening immediately afterward, but it did start within the first few weeks after my procedure. Sometimes the "burning" is worse than others, but it's always there as a reminder. Bathing is not something I look forward to at any given time. :eek:

I also experience more pain and burning when a breeze blows against my skin, like from a ceiling fan. So I find myself almost always in sweatpants (even in 100 degree weather) AND covering the one leg in a blanket to "protect" it from even a slightest breeze.

I do experience hypersensitivity to touch and will only allow someone to touch my leg with the top of their hand during an appointment so they can compare the temperature differences between the two limbs. The side with RSD is noticeably colder, which brings me back to the "burning" sensation that we try to describe. I don't recall where I read this, but this stuck with me as possibly the best description of the burning sensation I experience with my RSD. (here goes) ...

Imagine making an ice bath in something large enough to dunk your hand into. IF you were to dunk your hand into the ice bath and leave it in there for as long as you possibly can take (I think the person might have stated to leave it completely submerged no less than 60-90 seconds), the burning sensation experienced from the exposure to the extreme cold temperature is similar to the burning sensation we feel with RSD. Now I'm not suggesting that anyone with RSD really try this, but if you've ever experienced prolonged exposure to cold with icy and snowy weather, then you might remember feeling as though you had frostbite. You might've looked forward to getting out of the freezing cold, but the extremely painful "burning" sensation felt when your body went from extreme cold to exposure to warmth ... THAT is the best description I've ever heard and it hits home with me! I initially thought that gasoline/fire was a good way to describe the pain to a doctor, but the frostbite sensation is now a more accurate description, in my opinion.

The only description of yours that I guess I don't fully understand is your loss of temperature sensation? Meaning that you aren't able to distinguish differences in temperatures? Do others physically feel a difference in temperatures when one limb is compared to the opposite?

SO (long story short) if you are experiencing all of these things, I would definitely understand if you were to receive a diagnosis of RSD/CRPS. And anything less might make me search out another specialist who recognizes that not all symptoms of RSD may be apparent or detectable on any given day. Some of the symptoms I experienced initially (like extreme sweating in that leg) come and go at very random times. Nevertheless, that is STILL regarded as a symptom and not every RSD patient ever reports that symptom. So I believe it takes a true SPECIALIST to recognize the subtle differences and to make an accurate diagnosis.

I'll be happy to provide additional insight and support to you! I know it's difficult trying to find answers for the pain you're experiencing. All we can do is take it one second/minute/hour/day at a time and hope that the next is better than the last. :)

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