Originally Posted by jurgen975

I am must say that i am intrigued by this article so wher can i find the stories of people with CIPN and are helped with this drug

Originally Posted by LisaPeach

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.
Mine started in my feet and now it has spread to my hands, both upper arms, both legs and my gums (teeth hurt like crazy at times).


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 feet are the worst of all. I have all the crazy symptoms associated with neuropathy in my feet. Some numbness, electrical zapping, severe burning and stinging all the way to my ankles, stabbing in the middle of each foot at the same time, etc. These come and go all day long depending on how much I'm on my feet. My legs and upper arms get this severe, to the bone, aching like when you have the flu.


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.
My PCP told me to immediately file for disability. She had known me for about 5 years and was devastated when she saw how bad I was and how much pain I was in. I was awarded SSDI in Georgia at the reconsideration stage. I found out I was approved approx. 8 months after I filed in May 2013. I cried because I was only 51 and had worked since I was 14 or 15. I felt defeated but now I'm so glad I listened to her. There is no way I could have worked in these last 3 years and I don't see that I'll be able to in the future.
The SFN and pain make me extremely hot and I also have 2 fans on all day long in my bedroom. Sometimes the air from the fan even hurts my feet. Sometimes I sleep with my feet off the bed.
I go barefoot in the house. I also can't wear shoes and when I do I have the slip on sandals that have the Velcro adjustable strap over the foot. That's all I've been able to wear the last 3 years and even they hurt where they touch my feet.


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...
My SFN has not shown to immune related. But my PCP wanted me to try the prednisone......I found that a week of 20 mg really helped when going on vacation and then 6 months later around the Christmas Holidays. But now I don't seem to get much help from it. Have no idea why.
My oncologist would not accept that the chemo had anything to do with my SFN. I changed oncologist after that and my new one knows it contributed to my SFN along with the diabetes.


He has me on 2700 mg of Gabapentin, B1, 6 & 12. Morophine and Hydrocodone.
I take 1800 mgs of gabapentin a day. If I go any higher I hear muffled voices and music. I just changed from the BuTrans patch to ER Morphine 15 mg 2 times a day but it doesn't seem to be helping much and my pain mgmt. dr just told me he would not raise the dose....very upsetting to me to say the least. I'm also on oxycodone for breakthrough pain. 10-325.


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 ❤️