Really.....you guys are the BEST. I think I would lose my mind for good (and not want to find it) were it not for this forum. Gymjunkie, you expressed my feelings verbatim. It is already tedious trying to explain this disease to everyone who treats me. I've only had it for 6 weeks. I had some basic brochures I had printed out from RSD.org that I would hand out to people. I found them describing the disease very vaguely....almost inoccuous sounding. I ran out and haven't printed more.

The last time I went to one of the hospitals for my injection, I had to fight with the nurse to understand WHY I needed a numbing med before my IV. "I AM NOT A WIMP, I said.....this is about how my dysfunctional sympathetic nervous system perceives pain, I said......it's already spread to my right foot.......I do not want it in my arms/hand too. Look at my purple and blue feet. Would you???" I MADE them page the doc twice to approve it. I had already called his office the day before MAKING SURE it was available to me. Apparently, he didn't get the memo. AND (I may not have mentioned this) despite having an allergic reaction EVERY FREAKING TIME they've injected me before, they waited until AFTER my injection to give me the Benadryl. It only made the rash worse and itch like crazy. I even reminded them before my injection to give it to me BEFORE the injection. I don't know what they're putting in my IV and not. I assumed one of the meds was the Benadryl. Then, they only gave me half the dose until the doc was convinced the rash was, indeed, bad enough to warrant the full dose. I didn't know THAT until they had let me suffer and itch for 15 minutes, wondering to myself why the Benadryl wasn't working this time. $^%$ idiots.

I do NOT want to be bitter and angry. I would LIKE to suffer with this wretched disease with grace. I would LIKE to be treated with respect and compassion by the medical profession. I would LIKE to be able to support and help other people suffering from this and be an advocate for us.......ESPECIALLY since I still have my mobility right now.

So, thank you all for your support and advice. I allowed myself to be put on the Lyrica thinking I would attack this from the medicinal perspective as well. I've had such a bad reaction to it, as I do MOST meds they try me on (I always HAVE been super sensitive to them), that I feel stuck with just dealing with the pain.

So....that brings me to my next question (probably a separate post in itself).....is it bad for this disease to "suffer" with the pain if I can cope with it??? Will that make it worse??? or spread???? I don't have such severe symptoms MOST of the time, so I usually just take Advil and deal with it. Should I be trying to numb it all together to calm my SNS down??? I really HATE taking pain meds. They make me sick and constipated. I HATE them. BUT, if taking them around the clock for a few months might settle things down in my body, I'm willing to do it.

Oh, and I will mention the med you mentioned to my doc.......perhaps my psychiatrist on Friday (next week) as HE is nice and caring and takes the time to LISTEN to me (and NOT while searching ebay at the same time.....yes indeed.....my Pain doc looks at ebay up until the moment he's ready to give me the injection. I USED to think it was funny, until I realized I can't ask him legitimate questions about my condition because he won't look at me). #!$& !@@ holes!!!!!

Thanks to all!!!