Reflex Sympathetic Dystrophy Support Group

Those were some very nice words you wrote about me, especially my willingness to stay with it despite being in remission. Folks have wondered about my motivation many times - always nicely, but they're still very curious. Same thing with my web site, whose URL is in my sigfile.

This is why I do it all: First, it's intellectually very satisfying! Even though I can't teach right now, I'm still a medicinal chemist who naturally seeks out problems like this, but there's no motivation like having the illness yourself. I had hundreds of RSD bookmarks and paper reprints long before I considered a web site or a support group like this.

Another reason: In many cases, only my knowledge of medicine and chemistry has enabled me to get the care I needed, and I kept thinking how wrong that is. So I try to post scientifically accurate material here in language everyone can understand. Nothing is referenced by me, either in this forum or on my web site, without my having read the paper myself, so I know that its contents are being represented accurately.

Both of these endeavors are my way of giving back a little to the wonderful community who supported me so lovingly when I was so sick I wasn't sure I wanted to wake up the next day, if by some miracle I happened to sleep a little. It's extremely satisfying and gratifying to help separate the truth from everything else - often the truth can be very elusive!

Howard

You are a true blessing on this site. Like I said I investigate everything but not being a doctor or have the knowledge and degree to back it up it makes it hard to convince a doctor of a good thing. Most doctors or I should say specialist think they know everything and are unwilling to open their minds and investigate it themselves. Having you on here helps alot.

Thanks again,

Cindy

Third day in I am feeling rather yucky with nausea and some chest tightness but no breathing problems, and going to keep at it as its tolerable.

As a point of interest, my PM dr told me someone at a pain clinic in Adelaide was put onto it for severe phantom nerve pain a couple of weeks ago! Fingers crossed it will help us CRPSers!

Good luck to anyone that goes ahead and tries it xxxxx

Post edited by: BoradorLover, at: 03/13/2012 03:58 AM

Cindy

I'd sure like to hear how it works for you. Let us know.

Here is a link if others want to read about it.

http://www.drugs.com/mtm/memantine.html

I'm sure not one of those that say off-label prescribing is a bad thing. But I'd feel a lot better about this if there were a single scientific study that investigated its efficacy in RSD. But despite using every research trick I know - and that's a lot - I have been unable to find any mention of memantine in the context of RSD. DOES ANYONE HAVE ANY BELIEVABLE SOURCE SAYING THAT MEMANTIME WORKS ON RSD?

Howard

I do think that the Memantine does have some pain relieving qualities as while on it I had no period pain at all, so it maybe worth trying for some sufferers, everyones different, I have been resistance to just about everything.

Hugs to all xxxxxxx

I'm sorry to hear that both for you and for all who might have been helped by the medication. We are all different, of course, in how we respond. Thanks for letting us know how it went. I hope you're able to get those infusions if that's the next thing you want to try. Please let us know if you do! It's not that I want YOU to be the guinea pig, but I can't get the infusions or I would.

I wish it had helped you more and hope you're doing OK. Stay in touch.

gail