Once again I have started and stopped writing this blog a few times. Each time I stopped I worried that I was starting to sound whiny and didn't want to complain too much about the neuropathy from the chemo. One day I made a comment to someone about my "tools" that I use and carry with me now. And they really wanted to know more about neuropathy management for a friend who is starting to have problems with it. It brought home that I am not the only one struggling with these symptoms and I may have some advice or ideas that someone else hadn't thought of before.
**Note, I am not a doctor and neuropathy management should be discussed with your doctor, these are just tools that I find helpful to continue to do things more independently.**
Let's start with what is neuropathy; strictly speaking it is defined as damage to the peripheral nerves causing numbness, weakness and pain usually in the hands and feet. To break it down even further, we know that it is actually the brain that interprets these signals received from the peripheral nerves and the brain actually decides if it is pain, heat, cold, pressure etc. Anything that disrupts the signal along it's route to the brain can also alter the brains interpretation. In my case the neurologist thinks the chemo I am on is disrupting things at the basal ganglia at the spine and that I am receiving mixed signals. I am also having some loss of peripheral nerves at the fingertips and tips of my toes, which makes daily inspections for injury important. But everybody's neuropathy journey is a little different and others may have different sensation issues.
I also have flare ups of Hand Foot Skin Reaction (HFSR) another common side effect of chemo which causes inflammation and increased sensitivity in the soles and palms of the feet. This can cause increased sensitivity to heat, cold and pressure.
I need to go over some of my symptoms so the tools and strategies I use make sense, but please don't interpret this as complaining. When pressed by my doctors I actually have very low pain and it doesn't often get above a 3. Usually only when I am tired or have been standing a long time on hard surfaces.
Let's start with my feet, I am no longer able to walk barefoot unless it is on a very soft surface. My toes may be numb but the rest of my feet and ankles seem extra sensitive. Walking on a hard surface without shoes feels like I am walking barefoot on gravel with sharp stabbing pains in my joints and the bottom of my feet. I have extra cushioned shoes with a wide toe box, and find that most of the time that works just fine for me. I have indoor shoes and outdoor shoes and much like Mr. Rogers I change to my extra cushioned slippers or shoes when I come in the house. When in Florida recently I thought I would be fine in the soft sand but had to get water shoes for myself as I had not counted on the rough cement around the pool or the sharp shells in the sand. Always have back up pairs of shoes in the car. It is especially important to have properly fitted shoes if you have numbness and can't feel the shoe rubbing and causing blisters. I accidently wore an older pair of shoes hiking and got a huge blister on my big toe that I didn't even feel until it was several layers deep and bleeding. I highly recommend getting refitting's if you start to have more pain or discomfort from your current shoe. Sometimes just getting a new cushioned insert to replace an old one will work. Sometimes there is a shift or change to the foot that causes a need for a different shaped shoe. Like my developing slight bunions. I am going to give a big shout out of thanks to Running Lab for all of their expert help in keeping me in shoes that make it easier for me to continue to get out on the trails, stand long enough to cook dinner or just walking with friends. I also recommend a good podiatrist to help with foot care as the neuropathy progresses. Especially if you have any vision difficulties with seeing your feet to inspect them regularly.
Next for my hands; like for my feet my fingertips are now fairly numb. I have accidently given myself pressure sores when playing a game on my tablet that required a lot of tapping. I now use a stylus for playing any game, or if I have to do a lot of messaging. I also have difficulty texting accurately and fat finger a lot of the buttons. Typing on a keyboard is a little easier, but I still find myself having to correct quite a few words I thought I typed correctly. The palm of my hands tend to feel more pain and stabbing sensations that really shouldn't hurt. Like grabbing a tea packet and the corners of the packet poking into my hand felt like I poked myself with a needle. Or thin metal silverware feels like it's cutting into my hand if I have to push against some resistance. (Think scooping dog food out of a can or using the edge of the fork to cut your food.) I have tried to tell my brain to quit lying to me, I have said to my brain "look no damage to the skin, these things that I am doing are not actually harming me." But even though logically I know that it's my confused nerves and brain misinterpreting things, it really doesn't change the fact that it hurts to do many things. I will also fumble and lose my grip a lot of the time. Broken dishes, dropped objects and accidently flung objects are just a part of my day and my best bet is to take a deep breath, sigh it out and continue on after whatever broken plate or glass or pickle jar is cleaned up.
The tools that I have found most useful to help with my hands are: A small silicone can lid, works great for gripping things, opening water or soda bottles or any other serrated lid. Can also be used to grip handles of utensils that are too sharp or thin. Pop tab can opener, I am not able to lift the tabs to open the dog food or tuna cans. I use a small metal opener that has a slot for lifting the tab and a hook to help pull the tab. I also have a small multi tool that works great for prying open things. I carry a small folding pair of scissors as I can no longer grip the openings of zip lock bags or open packages of many snack items like granola bars and having scissors on hand eliminates a lot of frustration. Especially if I am tired and hungry. So I have my funny little pack of tools which I carry in my purse and I think that makes me maybe a little like Batman. (I'm Batman!)
Yes I know there are drugs for neuropathy and I am on some of them, however they have their own side effects and I would prefer to take as little of them as possible. I have also recently been made aware of possible supplements that might help. I have not tried them, and I would strongly recommend discussion with your doctor before trying any type of "herbal" or "natural" supplement, they also can have side effects or interact with medications you are already on and it's best to talk with a doctor who knows your health history first.
Since first writing this my doctor has had me start a steroid cream for palms of hands and soles of feet which has helped some of the sensitivity. Again talk to your doctor to see if this would be right for you.
I welcome any other gadget suggestions to add to my batman toolbelt, or if someone has found other strategies for dealing with their wayward nerves please feel free to pass them along. My goal is to keep doing things I like to do like cooking, hiking, and reading for as long as I can. Here is a picture of some of my tools, left to right is the pop top tab lifter, small multitool and silicone can lid.
May you find the tools you need to help you to be the best abled that you can be, love and light my friends!
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