Hey IHH,

So, maybe I lied about being tired when I wrote to you earlier! I covered some of this in that letter. But here goes nothing.

*If you've had blocks, if the first one wore off in the first few hours, did the next ones wear off sooner, or no difference or did they last longer?

My first ones were also with lidocaine, which (as I already said) is ridiculous. In my opinion, blocks should always be done with bupivicaine (Marcaine), as it lasts MUCH longer. After my first two, when I was with a very nice but not particularly experienced PM doc, my blocks were done with bupivicaine and lasted much longer because of it (bupivicaine lasts about 6-8 hours, lidocaine about 2-3 hours).

*Those of you with RSD in the mouth/ throat: what has helped with that? I have found cold ice water helps, but not sure about using that with the ice/ RSD issue?!

I've never had that problem, and I'm very sorry that you do! I wish I had some advice.

*Does anyone else BESIDES me and Frogga pass out from the pain?

I never did. Again, I'm sorry you've had to experience this.

*At what dose of valium has your muscle spasms lessened/ stopped?

I never took valium, except a few times before blocks (that first doc was also inexperienced in sedating people for blocks, it seems). I took other muscle relaxants. From what I know, both from reading stuff and from my docs, the best ones for RSD are Zanaflex and Baclofen. I took Zanaflex, but my muscle spasms never really stopped. I guess they lessened a bit, but with my RSD-induced dystonia, it wasn't really good enough. The muscle spasms have been with me the whole time, even when the rest of my pain was almost gone.

*What is the highest dose of amitriptyline you've been on that has helped for sleep?

Well, here's a funny story...apparently, a rare side effect of amitryptiline is urinary retention. Amitryptiline gave me my 18th birthday present---the chance to sign my own forms in the emergency room. Basically, I never got to find out if it would work for me. Apparently, peeing is one of those necessities of life. So my doc switched me to nortriptyline (Pamelor), which went great until I had a seizure from it. Great stuff...those are two of many stories that begin, "so this one time, my doc tried to kill me..."

*How many of you have been approved as "handicapped" and gotten a handicap tag for your vehicle? How did you go about it? (trying to figure that out)

You get a form from the DMV, and your doc signs it (at least that's how it works in Wisconsin). I had one, it was really simple to get.

*Who has in home heath aides to help them? How were you approved as "needing" that?

I had a home health aid who visited every other day when I had my TECs, but that's it. She was awesome. I have good stories about her as well.

*Any good positions in bed you've found helpful, if you have full body RSD?

Nope, sorry. I'm lucky, and I get to just leave my leg off the bed if I want.

*Trying to figure this out: which ones of us on here have full body RSD? (trying to get a count)

Count me out on that one...hopefully forever.

End of survey responses. Hoping to hear from you later. Wishing you lots of pain-free time!

-Betsy