i havent experienced any spreading from one part of the body to another, but it did spread from the tips of my toes to right below my knee. Im extremely worried about it spreading to my other leg though, because somedays i kind of feel little tingles on my good foot and i can kinda just tell that eventually im gunna have to deal with it on both legs. sorta sucks, but ill deal with that hurdle when it comes.

im really sorry to hear about your spreading. i dont konw if would be able to handle having rsd in more than one limb. you are a brave soul.

good luck!

anna

Heya

When my RSD spread I had achy tingles for a couple of days and then it spread literally overnight - when it spread from my right arm to my right leg I woke up inthe middle of the night screaming the ward down (I was in hosp having therapy on my right hand at the time) and my leg had gone black, dead, ice cold and SO SO SO SO SOOOO painful.

This has happened with all my RSD spreads - but other people I know develop symptoms very slwoly.. I just appear to have dramatic RSD or sometihng. I suppose one advantage of full body RSD (and internal) is I've run out of places for it to spread too - because it is SO scary as it spreads!!

Hope things are ok!

My RSD spread pretty quickly. It went from left knee/lower leg/foot up into the thigh and left hip within 2 months. Then by 6 months in it was in my whole right leg/foot and hip as well. 11 months in I had it in both arms and hands. Thankfully I've had no more spread and next month will be 4 years for me. When it was spreading I was kind of freaked out because it was so fast. If I've learned nothing else some people go fast, others slow and the luckiest ones have little or no spread for a long time.

Karen

Last year when my ankle had recovered from its last flare, I was opening my locker and my right hand started hurting. It spread just like that! It went away very quickly though. Sometimes when I do a lot of writing it hurts, but never lasts for long.

Wow Frogga!

My heart goes out to you! I didn't ever know you could get RSD in "internal organs". I wrote you asking about that in another thread today.

My RSD is nnot nearly so severe as yours. You are amazing! You must be a real fighter! Please keep up the good attitude. You are an inspiration! (But, I'm sure you have times that you NEED to just "let it all hang out" & cry or scream, or something! And, that's OKAY too).

Have a great day!

Denise

Frogga (Rosie ), you have really been an inspiration to me, too; as I see you telling others your experience and helping them out. I know you are going through a lot. I know the pain, dear.

Thanks for the reply. Humm... this morning my feet turned so purple they were nearly black. Sounds like what you are saying. Ugh... and my legs are getting ICE cold and SO sensitive.

I'll say RSD can be VERY dramatic in some people. Saturday I was running, and Sunday I could hardly move, the pain/ RSD was in BOTH feet and legs. How strange is RSD???!!!

It IS scary- HOW can it keep spreading??? WHY does it spread? Why in some people and not others? How does RSD really start? Why can't it be an easy road to recovery, remission or any improvement???

Just rambling... I have so many questions that I'd love for someone to be ABLE to answer!! Nobody knows the answers to the questions...

Keep fighting!!!

Oh, thanks. I don't feel so brave and I often wonder how I am going to get through this all- pain/ RSD in both of my legs and arms! But, I know I have got to try and recover by doing anything I possibly can (even if it means I have more pain by doing so. ie- physical therapy)... You keep on fighting the RSD battle!

Hey

Internal organs --> not all drs agree it occurs - however they do agree that I have issues with them that I didn't have before RSD. (Swallowing/ oespohagus/ stomach/ bowel issues - involving spasms and inflammation and lots of aspirating), heart / lungs - very high pulse, low blood saturation, variable bp from vlow to vhigh, kidneys - blood tests show up some sort of thing - they can't work out what it is.

InHisHands - I wish they could work it out too!!!! It doesn't make sense - but I suppose alot of stuff doesn't make sense!

Glad I am an insipiration LOL - though probaly not a brill one

Like everyone - there are days when this thing is very hard to fight - but I have found that trying to stay cheerful and as "normal" as possible (socialising with people my own age and trying to do the same things they do -erm.... go out and get drunk mainly ) really helps as it helps to distract me.

Wow - if im an inspiration then I will have to start behaving!

Keep on fighting - we'll get there...

Love

Rosie xxxxxxxx