For reference, like you, I also have a chronic progressive case of CIDP that has been pretty refractory to many treatment variations. Although slowly progressive, my asymetric CIDP variant has dealt me one very severe, acute exacerbation that started four years ago, and took nearly one year to regain a partial recovery from. I am 47 years old and have been on full SSDI disability since 2006. Thankfully, I was approved on first application. Overall, my deficits are about 65% motor 35% sensory.
I have two facial symptoms all the time: the first is constant double vision from 6th cranial nerve lesions from CIDP. These nerves control eye movements. If you look straight at me, you can see my eyes are “crossed” The second is minor lip numbness.
However, I definitely encounter a marked facial symptom increase during downturns when the disease is more active. The subtle lip numbness amplifies markedly, and climbs up the cheeks, and down the chin. Upon “recovery” it will resolve to current baseline. Additionally, I will get eyelid droop, typically in only one eye, as well as a worsening of double vision deviation.
The lip and facial numbness is a deep numbness akin to dental novacaine-type anesthetic – it is definitely not a “pins and needles” feeling.
I have been told that about 10 – 20% of CIDP patients encounter cranial nerve demyelination.