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theoneRogue420 · 11-12-2007, 11:09 AM

Hi Kyzy. I am so sorry to hear of your troubles. I hope the neuro can give you the help you need.

My problem started in my right ankle. It slowly crept into my left ankle, then started on my knees. I am also having some symptoms in my lower arms, too.. but I try to ignore that for now. I've had it 14 years now. Luckily, I don't have "full-body" rsd like you and some others here do.

The only thing that saves me from suicide is drugs... lots of drugs. It sucks, but there is no way around it. I try to take about half the morphine I am entitled to, but some days that just isn't possible. On those days, I am too stupid to speak. I really hate it.

I also have a tens unit, which helps quite a bit. The problem with it is the annoying wires that come with it! It doesn't work for everyone, either. I have Lidoderm patches too, but I save them for the very worst days. My insurance won't pay for very many. They really don't help as much as I make it sound, lol. It's a psychological thing... when I am at my utmost limit, they are just enough to keep me sane and get me through it. Kinda crazy, but whatever works for you is wonderful. We all have to find that "one thing" we can latch on to in the worst moments. Mine happens to be hot baths and Lidoderm patches.

It can take some time for a neuro to do all the tests. They feel the need to take a lot, to rule out everything else. That number varies from dr. to dr. Be patient and hopefully she/he will come up with a game plan that works for you. It CAN happen.

Try to stay as active as you can, and avoid braces and crutches unless you have no choice. I fell often for many years, and had to wear a r.o.m. boot. My ankle and calf atrophied dramatically over seven years of that brace. It has taken seven more to rebuild it a bit. Try not to let that happen.

Best of luck, you have my prayers. Keep us informed as you learn more. We will be here for you.

Rogue