jenn

I also really knew something was wrong when I had feelings of running ice water down my ankle and foot. But when I touched it, it was hotter then the other. Eventually it did become cold. more then 10 measurable degrees colder. Now it is up to my knee, starting in my other foot and occassionally in my left hand.
Thank god, it is not consistence in the other extermities. (yet)
But CRAZY! I sometimes feel like the only person who believes me is my family here on neurotalk and the doctor. A woman at work once told me I asked stupid questions. Memory is not all that sharp anymore. (I blame the meds)
I have had many lsb shots. (nerve blocks), a stimulator trial (failed). And I am considering ketamine.

Hi Sandy,
I live in Hawaii but I'm probably only the 2nd person (besides my momma) who wears a sweater EVERYDAY lol! It could be 80 degrees out and I am still freezing. People are always making fun of me! It's weird because I can be frozen and my left underpit is sweating! So I would be down for any type of warm water therapy. I used to be a waterbaby, I lived in the ocean my whole life-surfing, diving and fishing and I had an amazing tan but now I'm white as white can be and there's no way I would get in the ocean again. It sucks because my boys are waterbabies too and they absolutely love anything to do with the ocean but I watch them from the sand bundled up under my tent. I yearn so badly to get in there are enjoy time with my kids but I can't and that sucks some big b*lls!

I went in on Monday to see my doc and ask him how/why it progressed to my leg and he's got me going to see a pain management dr who specializes in RSD. So, I think I'm on the right track. He also gave me Gabapentin and Oxycontin but idk if I like the oxy as it kicked my butt and I didn't like the way it made me feel. I seriously couldn't keep my eyes open and I was talking in bubbles. My poor family probably thought I was crazy lol! I'm seeing a tremendous change in my leg only....maybe because its so new but I can walk a little better. Have you ever tried those two? When I take it I feel all these tiny muscle spasms all over my body. It feels weird! I don't know which one is doing that to me. Thank you for your support! I appreciate it soooo much!

Jenn

2 things-- have your hormone levels checked. RSD can reduce your estrogen levels, your levels further decrease when you have your period, so that's why you feel worse at that time.

Have you tried going in the ocean? Try it when you're having a decent day. It really decreases my pain, enough so that I'm considering moving to the Big Island.

Jenn,
You're not crazy.....
I went to my old primary doctor and gave him the run down and asked him if he would manage my primary care again. I looked right at him and asked him if he believed me. The bottom line? You can't help me if you don't believe me or think it's in my head. I am done being abused by those kinds of doctors. I am done being "managed" too. Manage my condition, not me.
I am still in the process of finding the right doctors to help me with the resources I have to work with for medical care.
Good luck and just be glad they want to do nerve blocks. You don't know how hard it is to get to that place alone. At least that is in the solution.
Jerie