Hi Mike..

As far as the RSD being in the hip/groin area where a catheter could be inserted, well I have known for a while now that my bladder is affected (though WCB still says it is not possible) and I know my kidney areas ache like labour backpain to the point that I cannot speak while it is happening, and then its gone till next time.. also I have residule pain... like an echo amplified on my hips as well as legs (even pulling pants up hurts for a bit before it tapers off).

I think it is in my whole body.. rolling aches and cramps stabs and peircing jabs.. they cant see what I feel.. (I have a nasty gremlin that climbs my body with a pick axe) My doc listens to the WCB doc that says it cant spread and so my doc has been hunting for other causes for these problems.. wanna pull out my hair but I'd probibly set off that area.

tonight my chest is cold to the touch and if I leave my hand there it will continue to draw the heat out of my hand and fingers till they are too cold to continue or help.. that symptom came just before the chest pain by about a month so June 2006.. my origional injury causing RSD was May 2005.

soft comfortable WARM clothes always, nothing restricting.. a bra left on too long seems to cause pains in chest up into the neak, when removed pain recedes for a bit... like echo pain I get from a keyboard on my lap it can send me over a bend if i cant figure out thats what is thats making everything hurt and move it quick.

an I get what feels like ice in my veins when my chest is cold it runs down the inside of each arm to the elbow (sometimes to wrist) like what it feels lile if an IV is too cold and running fast.. but it burns cold.

man I always seem to be whining I dont mean to... its just so frustrating and doctors dont wanna believe it spreads meanwhile somethins havin a smorgasboard in my organs.. I try give them information but I have not exactly moved along the expected (huh) road.. seems I found a hill.

Take care and stay warm.. and thanks mike,
Sandra

Dear Sandra -

I am so sorry to hear how tough this thing has been for you lately. And while I have experienced some of what you describe, the degree of your symptoms is staggering.

One thought though, your description of sharp stabbing pains reminds me of where I was, just around the time my chest pains started. But this was also before my neurologist put me on Xanax, which is a benzodiazepine like Valium but at least for me without the same "psychotropic" qualities, and this in sufficient quantities (0.5 mg. 4/day) along with healthy amounts of Neurontin and Zanaflex - which like Baclofen is pretty good for central nervous system induced cramping - really brought that kind of pain under some sort of control, at least within reach of drugs like oxycodone. And Neurontin really does help with some comparatively mild temperature regulation issues I've got. I also have found that Marinol - something which is decidedly more available in Canada than in some parts of the U.S. - has helped with the cramping on the worst days, but that synthetic hemp product definitely has psychotropic side effects.

Then of course there are the antioxidants that you mention above and so many people swear by . . . .

[And if your WCB doctor doesn't believe in RSD spread, give him a copy of the article by Maleki et al "Patterns of spread in complex regional pain syndrome, type I (reflex sympathetic dystrophy)" which is also posted on the RSDSA Medical Articles Archive page under the heading of "Treatments."]

My point being that a lot of us have found that if we manage to titrate our own personal cocktails, a pinch here, a tweak there, we can suppress the worst of the body-all-over sensations. If you have something that works that way for you, you might want to talk to your doctor about increasing the level of your medication for a day or so prior to any angiogram, even if that would make you a little too groggy to work or drive: things you won't be doing when you have the angiogram anyway. Then see if you can ask in advance whoever is doing the angiogram to have an anesthesiologist there to give you sedation. In my case, I didn't need it, but for you, and you should pardon the expression, it sounds just like what the doctor ordered. With a confirmed diagnosis of RSD it shouldn't be too much to ask for, managed care or not.

I wish you only the best on this one.

Mike

p.s. I know just what you mean about that little "ping" sensation when you take off a bra strap. I get it from pulling off my socks.

Just Updating

My blood pressure has been up to 144 over 85 at times (that I know of) but lately I have found my diastolic dropping, last checked at 132/52 two days ago. Gums inflamed too... just saw dentist and he said that could also cause heart pains (huh?).

I will look into your other info now thanks so much,
soft hugs,
S

Just Updating