Originally Posted by fmichael

Dear Jennelle -

Hi there. I never meant to suggest that edema in CRPS patients is "caused" by the amount of fluid in our bodies. Neurogenic edema is indeed a creature unto itself. From what I understand, it is generally agreed that we have what's called a neurogenic vasodialation, that is that sympathetic nerve system ordinarily maintains the tone of the blood vessels and thereby blood pressure (it is said to fill or "innervate" the vessels with nerves) and as there is a local dysfunction in the sympathetic system, there is in turn a loss of vascular tone and with it a build up of fluid in the area. But fluid it is. And while the edema is not caused by the overall level of fluid in the body, it can be relieved, albeit temporarily, by reducing the overall level of fluid. This I know from first hand experience.

That said, these are by no means do-it-yourself medications, and should only be taken under the guidance of an internist who knows what s/he is doing, as there are the potential for significant complications if either the wrong drug is prescribed or you are contra-indicated for the drug. And as far as monitoring is concerned, a basic metabolic blood panel is no big deal. The doctor can give standing orders to a lab and - if this is the right choice for you - you show up every four to six weeks to have a single tube of blood drawn. I had to do the same thing for Trileptal, that is until my level of blood sodium started to fall all of a sudden, and then I was off the drug. Truth be told, we are all probably on medications for which we should be monitored. (But we're not.)

Now, a couple of thoughts for Pete. You will forgive me, I'm not sure it's appropriate to draw a comparison with Vioxx, where we now know that was a new drug that was rushed to market without a careful (as in any?) look at the major studies that had reviewed it's use. In contrast, it is my understanding that many of the diuretics have been around for a long time and the medical community has substantial familiarity with their use.

Secondly, everything I have heard from any reliable source in the eight years since I've had the pleasure of knowing this beast is to the effect that ice is to be avoided at all costs. I would seriously urge you to check out that procedure with your doctor, lest you really hurt yourself, as in possibly facilitating the spread of our shared acquaintance.

Mike