Doesn't it just suck sometimes? And I do mean in a really big way? Well no frets okay? Were here for ya! Ya got a whole bunch of shoulders to lean on for support. Were here for ya 24/7. I just sent to you by UPS overnight a huge truckload of awesome and most excellent vibes. When they arrive just unwrap and enjoy. They'll know what to do.

Seriously your going through a rough time right now. Be strong and know that your in our thoughts and prayers. Chin Up!!

Mark

Hi there..

Thank you all for your replys.. wow there is so much good information here and so many heart wrenching experiences, shared research and especialy the comforting strenght.

So I saw the heart doctor today and he is sending me back to Victoria to see another specialist there about getting an angiogram, he didn't seem to think that they would find a major problem origionating within my heart and that it was more likely related to my pre-existing problem (RSD).

I think it was that that I do not always have pain with exertion and can as easily if not more so have pain at rest that is unusual.. and because of my other upper body symptoms happening as well, but as usual I will know more on my next apointment.

I don't think that this means I am out of danger yeat (are we ever?) its just that I can relax a bit and see what happens next.. yep same ol same ol.. man it dosent end does it.. I am always so amazed that we find the strenght to adapt as we do to the chalenges and the changes this disorder puts our bodys through.

I read your posts and I take heart and feel compasion for friends that I have thought of often this last year, we are all survivors and you are my proof that I too can survive this as well, thank you.

Take care and soft hugs an I got my deliverys and they were muchly apreciated and came when I needed them most.

Like a big comunity hug back atcha,
Sandra

Hey Sndy,
I was reading the old brain.hastypastry.net... web site and then found this site. I am confused??? [which is really easy for me most of the time]. Is this the new site that has been started since the other site went down? Any ideas?

Hope you are well. I spent the last two days in agony. I tried every medicine I have several times and could not get the pain to even calm down a bit! We had major cold front and rain come in yesterday and I think that was most of my problems. How do you handle the cold weather up in Canada?? It must be rough for you. I am hoping to move eventually to Arizona or New Mexico to get out of the stormy weather because it leaves me unable to move and in agony.
Take care,
Kathy d.

Hey Sandra,

Thanks for letting us know the outcome; at least it's a step in the right direction and I'll cross my fingers that the angio turns out OK.

I realise you aren't out of the woods yet, but one thing is really good - you sound more relaxed - you know, heart problems are only made worse by stress, so this pragmatic attitide is just what you need, I reckon.

Good luck at the next dr appt,
I wish you all the best

Hi there..

Just how invasive is an angiogram for us with RSD?

An hi Kathy I hope you are feeling better hon, an I do remember how bad it was for you this time last year.. an we could not get you signed up properly at BT.. I am so happy to see you here bud.

Take care an soft hugs,
Sandra

Dear Sandra -

I was fortunate that the area that comes most into play with an angiogram/angioplasty - the inside of the thigh - is not particularly affected by the RSD.

What they do is first give you a bunch of lidocaine or other local anesthetic in the region (anyone with an allergy to sulfa drugs must insist on preservative free lidocaine et al). If you want, they can offer you "mild sedation" which in other contexts has knocked me out, so I declined it. As it was, the procedure wasn't painful at all. Perhaps the most challenging part is at the end. If they put a collagen plug in you - and they will ask about allergies to beef or beef byproducts - they then put about 30 lbs. of continuous pressure (which isn't much) for about 20 minutes, and then ask that you remain absolutely prone for a couple of hours thereafter, at which point you can go home. If they don't use the plug, they wind up applying stronger pressure for what I understand to be up to an hour or more, and then insist that you remain prone for another 8 hours thereafter.

In either case - and having had this done twice - I would really and truly urge you to ask your doctor to have you catheterized before the procedure starts.

And in the unfortunate event that your groin is affected by the RSD then I would STRONGLY urge you to have continuous regional anesthesia in place throughout and for perhaps a few hours following the procedure. For articles on the topic, check out the "RSD/CPRS and Surgery" heading at the RSDSA Medical Articles Archive page at http://www.rsds.org/2/library/articl...ive/index.html

Take care,

Mike

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