Dear Rosie -

I note that in another post you mention having urinary hesitancy ("unable to go for ages"). From what I've heard from my doctors, and experienced up close and personally, that's part and parcel of oxycodone use, where one of the first things that serious levels of that drug do is relax the muscles of the bladder. Yes, the muscles of the bladder, it's not all gravity dependant.

I don't know if this is an option with the UK NHS, but where I assume it picks up the cost of your 24-hour aides, have you looked into the possibility of a Prialt (Ziconotide) pump?

Not only has it gotten some pretty good press from people with severe/intractable RSD, but there's also some new and admittedly anecdotal research out there suggesting that massive doses of the drug - derived from a really nasty snail venom - has put one desperate case into nearly complete remission. Check out "An Effective Treatment of Severe Complex Regional Pain Syndrome Type 1 in Child Using High Doses of Intrathecal Ziconotide," Stanton-Hicks MD, Kapural L, Journal of Pain and Symptom Management 2006; 6: 509-510 (Letter to the Editor), which appears, alphabetically by author under the "Treatment" heading of the RSDSA Medical Articles Archive page at http://www.rsds.org/2/library/articl...ive/index.html (fyi: Michael Stanton-Hicks is one of the better known RSD docs in the U.S.)

Of all people, you sound like someone who might really benefit from this development.

Mike