I suffer chemotherapy-induced peripheral neuropathy (CIPN) a fancy way to say that the poison they injected into me to save my life from cancer gave me an extra little present of excruciating pain and weakness in my legs the rest of my life. Okay this is not about negativity (I do have to remind myself of that from time to time). I just want to explain to my new friends who are going through the first stages of peripheral neuropathy that you are not alone in what you are now feeling and also to let them know this too will pass.
Now I have heard stories from others who said their neuropathy came on slowly and started with numbness in their hands and feet. Then over time this numbness increased to the point where the areas were not only numb but painful. Mine on the other hand, hit me like a freight train! I had undergone three separate courses of chemotherapy, two surgeries (one life threatening), and just had one course of chemotherapy left to make sure all of the cancer was indeed removed or dead. "Sure I can do it" I said! I mean i have survived so much up to this point. One measly course of chemotherapy to finally get my life back? "I got this".
The brain is an amazing thing, it can handle pain in many ways. One way with me is that it is much harder to remember the pain I have gone through in the past. However, I can remember laying in bed crying because I had what only could be described as crucifixion stakes being driven through the bottom of my feet. Of course these were not real stakes (although, I do believe that I looked to make sure a few times), but I think this is when my nerve endings were originally being fried up by the chemotherapy. The pain would not just stay in my feet over the next months but radiate up my legs at that time and go from burning hot to freezing cold in an instant.
During my "newbie" stage of peripheral neuropathy, I struggled with ever finding any peace to this change and pain. I may have been lucky in the fact that because of the surgery I had gone through and the cancer, I already had plenty of opioids to keep me in the what I call "brain fog" during this time. I know the the opioid epidemic has many people scared of taking these drugs and in other articles I will talk about great available prescription and and supplemental replacements, but even several years later, I still keep a prescription of OxyContin® in case I have a painful flare-up. The key is just to learn your body and keep track of what and when you are taking things and share this info with your doctor.
So I cannot tell you that the pain is going to go away, but I can say that you will learn how to manage it much better than when you are first experiencing it! Cry, scream, sleep, do anything that makes you feel better during this newbie stage. I found that loose, loose (can I stress loose) wool socks were about the best thing in world during this period, as you will find that nephropathy makes you very sensitive to temperature as well as pressure on your feet. Invest in a good pair of warm slippers too. So strap in and we will take this trip together, you are not alone! Feel free to ask any questions, or take a trip to our online community.
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