[Kymmie67]

Since being diagnosed in August last year, CRPS has spread from my right knee where it began, to include the thigh first and then calf and then buttocks. From there it went to my other leg.

What I am wondering now, is if the sensitivity and generally hot to the touch of my face, is the dreaded spread? Would it jump that far, when the only thing that might be affected between my bum and my face is a patch of burning skin here and there. Like on the back of my arm, for instance. It burns for a while, then it'll stop. Or I'll have a patch on my belly that will burn for a while and stop.

It seems completely random and having it in my face scares me more, to be completely honest. It could be possible that my eyes are already affected, but those things that have happened there, might be due to the meds.

So, would it jump that far? Has anyone else had a jump that significant and had it stay? It hurt to take my makeup off today! The sensitivity was one thing, but now the hot, burning? Yikes!

Thanks!

[finz]

Hi Kymmie,

I'm "jumpless" so far, thank God ! So, I'm weak on my knowledge of "long distance jumps" and just guessing here......

Could it be part of the sweating issue ? My RSD area is the back of my neck, but my sweating has always been neck, both arms, chest, and face/head.....big ol' hotflash.

Which brings up another possible dx......I don't know your sex or age, but could you be having pre/menopausal hot flashes ?

Does sweating come with the "hotness" ?

Or does it have allodynia with it ? Is it constant ? Or coming and going ?

What is the eye situation ?

Sorry that you are dealing with this......I sure hope it's not a spread.

[Kymmie67]

Hi Finz...

I am a 45 yr old woman, so I am definitely of the pre-menopausal/menopausal age.

I've had what I think are hot flashes before my dx, but they usually involved sweating over most of my body. This is just my cheeks and forehead being hot and yes, sensitive. It was really bad when I posted the first time, but not so much now. It seems to come and go. Just like the other hotspots. No sweating involved with it.

I just don't know what to think. I guess it could mean anything, really. I've had this thing spread, but mostly all the places have been connected somehow.

As far as my eyes go.....my vision has gotten quite a bit worse. I wear glasses, but my current Rx is not very old...this problem seems to have happened when I was dx/started meds, so I don't know if it's CRPS or meds. Also, my right eye tends to get really squinty, especially at night...they burn a lot more, too. I'm just one big ol' bag of issues!

I've had right shoulder surgery twice, although that wasn't the start of this whole mess. Lately, both shoulders have started to get really sore...achey and all that. My hands hurt, especially in the morning and at night.

I'm just falling apart! My poor husband doesn't know what to do with me anymore. He has, however, figured out that the more I do during the day, the more I hurt at night....so, I think he's had a few conversations with the kids about helping me out more during the day. With six kids, I really shouldn't have to do *anything*!!

Ok....I think I've gotten sidetracked....no concentration skills either.....but that's another post.

Thanks for indulging me!

[mrsD]

I just saw this thread.

I have to ask....do you take blood pressure medications?
ACE inhibitors? Those can cause your symptoms too.
They elevate bradykinin, which is a biogenic amine that causes
vasodilation and flushing skin. (and swelling elsewhere anywhere in the body).

If you do take an ACE inhibitor this is a bad sign and you should discuss stopping it ASAP...with your doctor. I had a massive drug reaction like this... just recently.

This warning goes for anyone taking an ACE inhibitor, whether they have RSD or not.

[Kymmie67]

Nope, no ACE inhibitors.

So, I'm not sure what to think or do. Today is horrible! My whole body burns!

Thank you for any input. I'm a mystery!

[Morgan Herritage]

Certain narcotic medications can put hot spots on your body. If that doesn't apply to you, I apologize. RSD in general gives me hot flashes/hot spots. Face included.
As long as the sensitivity stays away, you should be ok. Prickly skin, the tingly/electric feeling coming on in an area is a sad sign of spread

[Kymmie67]

Well, I am taking methodone every twelve hours and Percocet for breakthrough pain. I'm sure, between the two of them, I'll get my fair share of hotspots!

Today, however, it's not just hotspots all over my body. As you were describing spread, Morgan, I realized that I'm feeling only the hotspots in certain areas....but others, like the tops of my feet....have started to be sensitive and tingly/prickly. Oh dear! Just what I don't need!

Thank you!

[Brambledog]

Kymmie,

Breathe girl, don't let this danged thing panic you I read this thread with such confused thoughts. On the one hand I was so relieved to hear someone else describing things I've felt or I feel now, on the other it kind of scared me to think about all this again - I've been doing the box thing....put it away and try not to look at it

My CRPS started in my left knee after a minor op, and stayed there for about 10 months. Then I started getting symptoms in the toes of my left foot. It gradually spread to my whole foot and ankle, and up my thigh to my buttock. I also have it in the first two toes of my right foot now, and that scares me witless. In the last three months I have been having symptoms in my left arm, not awful, but in that insidious way it seems to work. One day you think it's ok, the next omg its bad and you can't ignore it. Sometimes I think I'm going a bit crazy.

I've also had electric shock pains over my whole body, including my face, and I quite often have flushes on the left side of my face, normally in the morning. The left side of my face often feels as though I have slight sunburn. I am at the moment having problems with body temp, sometimes I feel freezing and shiver, other times I feel burning hot...and it can change within a minute. I get tingles, prickles and little stabby pains all over me at random times. More on those bad days of course.

I've done a lot of reading about this thing, like most of us I think lol, and CRPS can affect so many things.... I'm convinced this type of stuff is the CRPS playing nasty little games. The only way I can deal with this stuff is by trying to pretend its not happening and distract myself and my body. It does settle in the end. I don't think it means your CRPS spreading everywhere.

Really good luck, it is scary sometimes, and it's tricky to try and get on with life when things like this are going on and you feel anything but normal. You're not alone with this, and I hope it calms down for you soon.

Bram.

[Kymmie67]

Bram....you are totally and completely describing me exactly! That is kind of scary!
I am almost positive it all has something to do with this CRPS. At times I am pretty calm and have the "whatever will be, will be" attitude and other times I'm scared out of my skin!(oh how I wish that were true sometimes!&#128513
But, I am in line for a spine stimulator, the trial worked well for me. So, hopefully that helps with other parts of my body and not just the right leg that the trial covered.

I have to be somewhere all dressed up (difficult all by itself), in a room where it would be completely conspicuous to get up and leave, and sitting....not up and down, but in a sit up type chair. How am I going to deal with that? I am burning all over today.

I don't like this one little bit!

Thanks for the words of wisdom....gotta run.