I have CRPS in my left arm. In the last year, I have been having symptoms in my right arm. Now its spreading up my left neck, face, lips, chest and left boob!
I am still telling myself its all in my head, dont think about it. But it is getting worse. Can you share your stores about when your CRPS spread to other places, or into full body CRPS. i am scared I will be full body soon. I get waves of pain that jump around to all the places I described? Please tell me how yours spread, how long it took, and what happens next?

Very interesting question.

I think about this often as mine has not as of yet spread. I'm sure many others wonder about this as well since tracking of CRPS is spotty at best.

I will be watching the replies!

Mine spread from the jaw to the neck and shoulder very fast....as soon as I was cleared by my md....as we all know to well, it is awful. As the years rolled on, teeth erroded and my ankle broke. Then as I had to lay still for an MRI for two hours... It went almost full body....and hasn't stopped....... Keeping up the fight

Hi Dhall,
This monster first was in my left forearm and hand due to surgery after a very bad truck accident. As it got worse my hand began to claw up to the point of my fingers pressing my wrist where you check the pulse. To relieve the pressure and make my hand look somewhat normal I surgically had my wrist fused and a 4" plate placed across from my forearm to my hand to hold it straight. I lost the control of my fingers.
Then the spread started. First to my left side from the shoulder to my foot. I thought this was due to the rod and plate in me.
Then my face became numb and drooped so a CT scan was taken and this is when the shrinking of my cerebellum was fist noticed.
My monster spread to my central nervous system at the brain stem area where the spine meets the brain.
Now CRPS has taken over my entire body through my nervous system running everywhere.
Between the lack of control of my motor skills, being forced to use a wheelchair and the constant nerve and bone pain it's now become a daily battle. Some days are okay and some are not.
Days like today when the triggers are hitting hard I wish I could take something to go totally physically "comfortably numb".
To answer your question, from the accident to full body CRPS took around three years.
Well that's my story anyway. Thanks for listening...

Mine first began to spread after I had a lumbar sympathetic block meant to help the RSD in my left ankle. The spread pain started at the injection site in my lower back, then crept up my spine, the to my neck, then shoulders, around to my torso, then down my arms, and eventually to my hands. later...it spread up my leg to my knee, and after a bump from a visiting nephew it spread to my left hip. just last year I had a baby via c section and I now have the RSD internally in my abdomen where they sliced through all the nerves.

Congradulations on the baby, more power to you for not letting CRPS stop your life!
How long did all this take?

My CRPS started in left foot over 10 years ago with a tiny stress fracture, I was a runner. Took about 5 years to fully spread to both feet, ankles and up the legs. It stabilized for 5 years and I have simply modified my life to deal with pain. End of October, 2015 it has since blown up and spread to my entire upper body - arms, stomach, chest, neck, face, scalp, back. With no reason - no incident, no trauma. Still searching for answers. Any my pain doctor retired and I am having a hard time finding a doctor in ATL that can address the more advanced pain in my lower body acting up and the full upper body burning that is now day and night. No appointments until Jan 2016......

Mine spreads with injury or stress. These new sites tend to wax and wane and they seem almost to dilute the total amount of pain I experience in the original site.

Grape seed extract seems to work quite well for controlling or preventing spread. I take a large dose every three days and increase the frequency after injuries.

Over the years only one spread site has ever disappeared completely but most seem to get better over time. I'm not nearly so fearful of the sporead as I am that symptoms might intensify. Each of us is different though and I'd not encourage anyone to take the spread lightly.

The spread throughout my body all happened within a couple months of the block I had...the spread to my abdomen after the c section was immediately after the c section...though it was hard to tell at first if what I was feeling was "normal" or the RSD...but 8 weeks after I had the baby the doctor said the pain should've completely subsided and it was still just as bad.