I am so happy I found this site. I guess I have CPM but have not been told how I got it. I have such pain throughout my body and am so tried all the time. I am 53 years old and feel like I am sleeping my life away. I have been to dr. after dr. the last nuro dr. told me I should not have the pain and she went on to tell my family doctor that she thinks I need mental help. I just started crying as I know I am not crazy and I do have pain. I guess I would love to know if anyone who has CPM has pain along with it. Also I am headed to another doctor at University of Washington any comments or help in questions I can ask or any information I can get to pass along to this doctor would be most helpful. I am at at loss. it seems like these doctors dont know much about this. thanks to all.. Joni

Hello & welcome,
I'm glad you had the full name of the CPM on your profile, I couldn't find it by googling.

I'll add central pontine myelinoysis to the thread title so more replies, or others seeking information about it will find the post.


Often we get posts saying Drs think there should be no pain, but if you have pain , trust yourself and keep searching for some sort of care provider that will believe you and try to help. It may take a care provider that is more alternative based if a MD or DO cannot be helpful.