hi everyone. hope you're doing okay. i've been trying to manage the best that i can but the cold weather coming on is reaking havoc with my rsd. my pain levels are about a nine lately. i recently had to increase my pain meds and anti depressant meds because of this. my rsd had spread to my limbs, stomach, mouth and now my bones. i may need hip replacement surgery for both hips because my bones are thinning so much from my rsd. i am going to see the ortho surgeon next week to find out. i am really scared of more surgery and more rsd spread, but can barely walk and the pain is horrible. hope they can do something other then surgery. just needed to vent a little. hope you all are have low to no pain days and that your holidays are filled with happiness and joy.

Sometimes all I need to do is vent as well.
I got CRPS at the age of 9. I tore a ligament in the elbow and it spread to full body with organ involvement in about 4 years. I've been thru everything medically possible (est. 50 surgeries & another 4 dozen procedures) to help stop or lessen the spread. It all did nothing but make it worse but eh, it's always a gamble.
If u ever wanna talk, at anything I'm here most days to check in.
Every day I'd rather just sleep all day, but that never works. I've found a couple things that help take the gnawing constantly tiring pain. One is my dog duke. Another one is medical marijauna, 😆😆
I'm so sorry your struggling so much, I hope things lighten up ☺. Your never alone tho! RSD/CRPS is rare but I found out I didn't have to go thru it solo all the time if I didn't want to.

JamieMarie23 my name is nannythree14 and I became a member on 1/6/15. I was just reading the posts and yours just popped out at me.

Have you ever heard of Dr. Aaron Filler? He is at the Neurography Institute in Santa Monica, CA. When I saw that you are in California I decided to reply to you. Please look Dr. Filler up. He originally did all his work on the East Coast;Maryland to be exact. When I saw that I was going to contact him, because a drive from Pennsylvania to Maryland was doable for me. At least it was until I researched further and found that he had relocated to Santa Monica at the Neurography Institute. Well I don't have the money to fly out there and have him look at me, but you are right there in California! Google him and read about his procedures. I am trying to find out if any of the doctors he worked with in Maryland were trained to do his procedure.

Dr. Filler uses MR Neurography to find the exact location of the initial RSD incident and then follows it to see where it's headed next; he can actually stop it from spreading further. He uses the MRI machine during the surgery (apparently he pioneered this approach) and from what I understand he has had many successes with his technique. I would give anything to be able to see him for a consult, but it just isn't in the cards. I have to undergo open-heart surgery in about a month.

I hope this information helps you. I have been doing battle with RSD for the last 12 years . When a doctor or nurse asks me what my pain level is, I tell them they can't count that high. I really hope you can get into see Dr. Filler; the sooner the better. Good Luck and God Bless - nannythree14

Hi RSD,
So sorry to read about your spreading. I can relate.
I found out a ways back that my cerebellum is still shrinking and because of that my speech is slurred and have no balance what so ever.
I sure hope the docs can help you...