Hi everyone, I have RSD in my right foot and leg to my knee and also (doctor thinks) I have shingles on top of that..ok, now that I've caught everyone up, two days after I started taking the Valtrex, my LEFT foot and ankle has swollen and hurts if I touch it, no color change yet, the back of my ankle really hurts and has a little scab on it and really hurts like a raw sore burns but its not open, I haven't done anything to it, could the RSD be spreading and can it really go from one foot into the other or does it have to travel a certain way?? I really don't have a clue..thanks for everyone's help on this site...I have learned a lot...Pepper

pepper
unbelieveable that my SIL has just learned that for years that she has had shingles and was miss DX .. as much this weekened that i have read about shingles. its horrible and im so sorry i will pm you some sites i had been looking at.

also RSD does what it wants mine spread from arm to arm then leg to leg which they said was weird so yea it makes up its own mind

i really hope that you can find some relife

carrie

Thank you, when it went from leg to leg, did they look the same when it first started???

I don't consider your spread "weird". LOL It's called mirror and continuity type spread. Mine went left leg to right,then left arm to right. Hey, did we spread the same? LOL There is also independent type spread that jumps from say leg to an arm.

Ok, lesson over. LOL Everybody has spread in a different way. Some will have color,temp changes and of course pain right away. Others won't have any changes just pain. There really is no "normal" or "right" way for it to spread. For me, I had the pain,color and temp change right off. The sensitivity to air came later. When it went into my arms it was just pain but no color or temp changes at all. That came about 2 years later. I guess I had it both ways. LOL I only had sensitivity to air for the first 3 yrs then developed sensitivity to touch 3 years ago. I wish that one had stayed away!

I don't know why your left leg is doing this but I find it kind of odd that 2 days after you take the valtrex this pops up. It doesn't say that it's a side effect but no one knows how drugs affect everyone either! Is it just a coincidence or what? I also read about the med too that you need to take it within the first 72 hours of getting the shingles rash and if taken after that the medication may not be effective at all. Thought I'd let you know about that one. I don't know when you got the shingles rash and all.

Hugs,

Karen

I just sent you a really long message and it disappared, I'm hoping I sent it to you and didn't know I did it...I did have pm figured out and now I forgot how to do it...thank god I'm a blond and can get away with stuff like that ..Please let me know if you got it...thanks,Papper

mine when it spread was horrible each time it would get worse with each spread. pain the whole nine yards. but mine spread to all limbs and face in 6mths so dont go by me. im a freak of nature LOL

I read the sites you sent me the were speaking in my language that I could understand (good ones) Let me know if you get the other email or if its lost in ciberspace somewhere...

you mean emailing me ? then it got lost LOL

Hi Pepper,

I'm SO sorry to hear about everything that you are going through right now! I really hope that you start feeling better real soon and I am keeping you in my thoughts and prayers.

My RSD has spread also. It started in my left leg after an ankle sprain in March 2007 and spread to my right arm in September 2007 after another injury and I now believe that it has spread to my left arm (although I haven't been diagnosed or seen my Doctor about it yet).

As some of the others have already said, there is no correct way for RSD to spread. It will do what it wants, when it wants unfortunately and no two people present the same.

If I could give you any advice, it would be to keep moving your leg as much as possible!! I KNOW that it is really hard and painful but that is probably one of the things that will help you in the long run. Start off by doing gentle exercses and then build them up as and when you feel able to. Do you currently recieve any Physical Therapy?? PT is pretty important in the treatment for RSD so that might be something to look into if you haven't already. I have PT on a weekly basis at my local childrens hospital and do exercises at home on a daily basis. It hasn't took my pain away at all BUT I am more mobile than I used to be (I can now walk short distances unaided where as I was wheelchair bound before).

Also, have you looked into the side effects of the medications you are taking?? I just wondered whether the new med that you have been prescribed could be contributing to some of your problems as the symptoms started 2 days after you started taking it? That might be something to look into and let your doctor know if it isn't helping you that much.

Take care of yourself and please know that I am here for you if you ever need to talk because I DO understand what you are going through and just how scary it can be dealing with spreading or worsening of symptoms etc.

I am keeping you in my thoughts and please keep us updated when you can. Sending many pain-free hugs your way and I hope you get to feeling better real soon!!!

Alison.

Hi my condition to has spread. It started in the left inner ankle/foot/calf and now is in both legs and my eyes/ear. I have heard finding the right treatment whether meds or invasive treatment can help all areas. Its just finding that and it is very hard and scary. I have a friend who has it fully body and had many treatments of catheters,meds,blocks a scs. Then she just got another scs and it has helped with everything. Before she could not walk or eat from the rsd and now she can do all. Just a little inspiration of hope I guess