Reply To: Screaming pain

January 14, 2013 at 3:56 am

Unless you are in complete remission I wonder why the neuro doc would say no to further IVIG?? This perplexes me. One year ago you had a full neuro workup for CIDP?? Was a possible second condition ruled out?? Have you thought of a third neuro opinion?  Do you feel you are over doing it activity wise unknowingly exasperating the pain?

I used to use intense visualization to think I was shoveling snow on  my burning limbs. The IVIG is helping me but my CIDP is still progressing (but slowly).

There is the controversy on using opiates but we have a disease that can cause unbearable pain.

It does concern me your pain has gotten worse and it would be awful if you did lose your job because of it. When pain sucks the life out of you something needs to be done.  I have my break thru pain meds and I think you should have extra meds also to help you on the super bad days. My non-professional opinion to have a long chat with your pain doc and see what magic can be worked out for you to stay working and enjoy life. I don’t think anyone should suffer when there is a chance their pain can be better controlled.