I am sorry that you are dealing with possible spread!! It is scary and stressful for sure.

For me the spread has been rapid and obvious. My original nerve injury was in my right hip that caused CRPS symptoms in my right thigh to just below the knee [insane electrical shocks, freezing burn, swelling, rash, tremors, severe sensitivity, deep bone pain, knife like pain etc.,] within months it spread to the entire right leg and then very shortly afterwards the left let & both arms [although arms are not as severe]. The first symptoms of spread were the electrical shocks, tremors and freezing burn - then came the deep bone pain and sharp stabbing pain. Within 18 months it has spread to include all limbs, face, bladder, bowels and recently complete autonomic dysfunction. All this, in spite of very aggressive treatment.

My best advice - keep moving. Even when the pain is so bad I can barely walk, as long as I keep moving I can get through it. When I stop or there is no way for me to distract, the pain becomes unbearable. Even though it hurts to walk, it hurts much more to be stationary whether that is sitting, laying or standing and it makes the stiffness, muscle spasms and burn much, much more difficult to tolerate.

I do hope you and your doctors are able to come up with a regimen that helps you!