Hi,
I sympathise with you as a fellow sufferer.
Often referred to as non- diabetic peripheral neuropathy or otherwise chemo- induced peripheral neuropathy (CIPN) it seems to apply to other tkis apart from nilotinib; I have been told that this is a condition that I have as a result of long term use of imatinib.I have consulted with a neurologist and have had nerve conduction tests on my leg muscles etc etc and basically there is no treatment available;discontinuing the tki would help but that as we know is not possible for most of us.I have little reflex left in my knees for instance and the feet feel as if they are in a cast.Like all forms of neuropathy keeping the feet, toes and nails in good condition is fairly important;one of my big toes is very sensitive on occasions.
Basically the peripheral nerves have been damaged. Motor nerves control muscle movement and sensory nerves the senses - as you describe symptoms are numbness,tingling, burning and stabbing.Cramping and muscle shrinkage is common as well. Eventually if the condition progresses there is lack of co ordination and falling.Where autonomic nerves are affected it can lead to heat intolerance and changes in digestion and bowel movements and leads to blood pressure problems and dizziness.
I have tried a TENS stimulator that I bought on Amazon that gives an electrical pulse massage to the feet and the lower leg muscles plus a foot bath massager-it gives some relief.Some studies have suggested that vitamin E, calcium and magnesium helps plus other supplements and an anti inflammatory diet as well.Some suggest wearing comfortable woolen socks when sleeping but I have found not proven.
If the condition worsens life might not be so comfortable;in the meantime exercise,strengthening,stretching,balance work and lots of walking keep me going. Physio in more severe cases can help to rectify imbalance in walking and link better messaging from the brain through the spinal cord to the damaged nerves.I have invested in several pairs of some very comfortable ASICS trainers that seem to help balance.I have come off a statin as that can exacerbate the condition I suspect.
Regards
John