CAN ANYONE HELP?? Feedback needed!
I have CIPN (Chemo induced Peripheral Neuropathy) from chemo- Acute Myeloid leukemia. I have been dealing with it more since my 8 months of chemo ended in 2014. But it continues to worsen in my hands.
Thing is: I I don't ting or get numb -only burn with an unbearable burn that keeps my hands and feet on fire 24/7. I equate it as best I can as to like a chemical burn with a sunburn on top. I have developed a pain intensity scale of my own depending on the depth to which I burn:
1= top surface burn. 2=a bit deeper burn that is more intense and 3= the deepest burn that almost feels like I'm burning to my bone. My pain never drops below a 7. It's so bad that I can only wear flip flops. I can not wear any other kinds of shoes or socks. I can not handle blankets on my feet and I spend a lot of time on my bed with 1 fan on my feet and 1 fan to the side of my bed on my hands. My quality of life has dropped so drastically. The CIPN has me disabled- at 43.
I've been on prednisone since onset in 2013 to help with symptoms. My oncologist has overseen my treatment after initial diagnosis of CIPN by a neurologist. Before getting Leukemia I only took 2 pills a day: blood pressure and allergy. I do not like pills so...
He has me on 2700 mg of Gabapentin, B1, 6 & 12. Morophine and Hydrocodone.
My oncologist recently said that in all the years that he's practiced, he's never seen anything like this associated with Leukemia and his colleagues have not either.
Is anyone else dealing with this kind of burning with CIPN? I read so much about tingling and numbness but not just burning.
Thank you all for taking the time to read this.
God Bless ❤️