NeuroTalk Support Groups - Anyone have "hot" and "cold" rsd?

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- - Anyone have "hot" and "cold" rsd? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/113917-hot-cold-rsd.html)

Quote:

Originally Posted by bassman (Post 646692)

I don't know if there is an official definition for flare. My thinking is that first there is the "norm" or what is normally happening. This is how you feel most of the time. For each of us it is different. When my meds are adjusted correctly, I run along at about a 5 or 6 on a pain scale of 10. I know what typical sensations to expect. That is my “norm.”

When I experience what I call a "flare" (short for flare-up, a term used by fire fighters when battling a building fire - you can picture what it means there) my pain level might jump to 9 or 10. I might get localized sharp pain like a harpoon or a dagger in my leg. Others might get a severe increase in temperature, which would correlate nicely with the firefighter’s terminology.

If you say your temp is all over constantly...you are either getting a LOT of flares or your doctors still have not found the right medication cocktail to help you get that steady 5 or 6 pain level like I have. In other words, you don’t have that nice, steady “norm” I was referring to. I really hope you could achieve that. It doesn't sound like too much fun, but it seems better than wild fluctuations!

I really wish you the best.

Gentle hug :hug:

Mike

Thank you for that , Mike...

I think I am in constant flare, which explain the agressiveness of my RSD..See that burning building thing, I call it hot glass..deep burning.. at the level of 8-9 in all of the time for me... for the last 3 years..as far as a med cocktail..that is not possible for me as my tummy won't allow any cocktail to stay in there...so I cold turkey it...Which I think makes me try to be the forever optimist and simply say..I must make the best of it now as RSD sure likes me..I don't like it much but it is trying to pursade me to be it's friend..I don't want to budge on that....

I am happy for your info. just the same and I hope you have a great day..

Kathy

Does anyone have both "hot" and "cold" RSD?

Yes - there are two types of RSD, hot and cold, and a doctor will feel your extremity on examination and compare your RSD impacted extremity to your normal extremity for differences.

I have seen this used for two purposes. First, I have seen the difference in temperature change used to diagnose RSD. In my case, my impacted right extremeties became extremely cold upon the onset of RSD. The neurologist used this differential as input to her diagnosis.

Secondly, I have seen the difference in temperature change used to diagnose the effectiveness of Stellate Ganglion Blocks. Following each Stellate Ganglion Block for my right arm, the neurologist evaluated the temperature of my right arm as one criteria as to whether the block had "taken". Each time, the temperature increased. She told me that we knew that the RSD in my arm was sympathetically mediated.

When my RSD spread to my right leg, I also had "cold" RSD. However, following my blocks, there was no temperature change. This, among other inputs, led my neurologist to conclude that the RSD in my leg was not sympathetically mediated. Sadly, this eliminated blocks as a treatment option.

It's interesting - temperature can be a useful diagnostic tool and treatment tool for us. Hope my experience is helpful to you. Many well wishes.

Quote:

Originally Posted by geronimo (Post 618225)

I was wondering if anyone out there had both hot and cold rsd. My foot and leg for the past year has mostly been differet shades of blue and purple and ice cold. Last night they were bright red and warmer than my other leg. Now this morning they are a reddish-purple(closer to my normal rsd color) but still warmer than my "good" leg. Ive seen people talk about warm or cold rsd but not both. Figure someone out there has had this happen

Hi geronimo,

Welcome to the forum, I'm sorry that we meet under these circumstances. Initially I had hot rsd, then after the couple of months it turned to be ice cold and I could never be warm enough. I've had Rsd now for 8 years. This past winter my hormones went off balance due to perimenopause possibly menopause. Suddenly I have had extreme hot flashes (like every 15 minutes)and can't seem to be cool enough. My foot/leg now goes bright hot red compared to the old cold & purple. From one extreme to the other LOL. I'm working on the diet side things to try to get things back in balance but it takes a lot of patience. Hormone replacement has been good so far but for me it seems that the RSD throws off my hormones more than I initially understood. I try to be fully conscious of my daily choices and all that that entails. I don't know if that relates to where you are at in your life cycle but that's been my experience to date.

Warm or wishes.

MsL