Six months ago, I was diagnosed with small fiber neuropathy and autonomic neuropathy, which is a form of dysautonomia. I had been searching for a diagnosis for my unexplained weakness and fatigue for a few years, but all of my testing was coming back normal. Every doctor I saw diagnosed me with different conditions: depression, fibromyalgia, chronic fatigue syndrome, anxiety, and PTSD. I never felt like these were the cause of my symptoms, and after months of searching, I was referred to an amazing neurologist who put the pieces together and found the true cause.
In the human body, the autonomic nerves control things that we don’t normally need to think about like digestion, blood pressure, and heart rate. Autonomic neuropathy causes all of these nerves to malfunction. Though I have found many things that help, I still experience symptoms such as dizziness, nausea, fatigue, and weakness on a daily basis. I am working hard to improve my symptoms and quality-of-life, but I know that the chances are low of my nerves regenerating.
Because of this, I have learned to manage my symptoms with lifestyle changes as well as medications. To me, these are normal things that I do every day. But to other people, these things might seem a little bit weird. I hope that by sharing these 10 things, I can help bring a better understanding to the chargies living with this condition.
Ten things that I do because I have Dysautonomia:
- Fidget Constantly Autonomic neuropathy causes blood to pool in my arms and legs, so I try to move them a lot. I fidget while sitting down, standing in line, and even in bed. This keeps the blood moving around and prevents my arms and legs from becoming painful and swollen.
- Drink Lots of Water Autonomic neuropathy causes me to have low blood volume, so to combat this, I drink water all the time. I always have a water bottle with me, gallons of water in my car, and electrolyte tablets in my purse.
- Wear Compression Socks Because autonomic neuropathy causes blood pooling in my legs, I wear compression socks anytime I am moving around to help squeeze the blood back to my brain. They keep me from feeling dizzy and lightheaded, and they help my pain a little bit as well. Most compression socks are not the most stylish, and most of my outfits don’t look the greatest with knee-high socks. However, I put up with this since compression socks make such a difference for me.
- Make Lots of Bathroom Trips Autonomic neuropathy causes my G.I. system to malfunction in different ways everyday. I get nauseous frequently, and a lot of times, food doesn’t sit well. I also have problems completely emptying my bladder, so I tend to make lots of bathroom trips in order to avoid being uncomfortable with no bathroom available.
- Squat or Sit on the Floor Sometimes on bad days, I just need to sit down. This is not always convenient, like when I am standing in line at the grocery store, but it’s better to be sitting and embarrassed than unconscious. If I am shopping with friends and they stop to look at something, sometimes I will find a seat on the floor next to them. Usually, though, I just use my wheelchair so that I always have somewhere to sit and stay safe.
- Avoid the Heat As much as I don’t like the cold, the heat is so much worse for my symptoms. Autonomic neuropathy can cause heat intolerance, which makes me nauseous, lightheaded, and extremely tired when I am overheated. Because my sweat glands are affected as well, I can get overheated in places that most people would find a comfortable temperature. I always carry cooling towels in my purse, but sometimes it is just too hot for me to stay.
- Elevate my Legs Because the blood pools in my legs, I like to rest with my legs elevated higher than the rest of my body. This can help to resolve symptoms, and it improves my ability to rest. If I am extremely symptomatic, sometimes I will lay on the floor with my legs up the wall.
- Change Positions Slowly If I move too quickly, my body doesn’t have enough time to move the blood from my legs to my brain. This is especially important when I wake up in the morning or from a nap. I spend a few minutes sitting upright, a few minutes with my legs dangling off the bed, and a few minutes standing up before I start my day. This gives everything time to get into the right place and avoid a morning flare.
- Pick Things Up with My Feet Bending over to pick things up causes a lot of dizziness, so I find creative ways to avoid it. At home, I usually am barefoot and pick things up with my toes, but in public, I try to ask for help or squat down to get things. Soon, my service dog in training will be able to pick things up for me so that I no longer need assistance.
- Use Grocery Delivery Autonomic neuropathy causes my heart rate to be elevated all throughout the day. This makes normal things like washing the dishes, folding clothes, and going to school a workout for my heart. If I can conserve energy by delegating tasks, I will, and getting groceries is one of my least favorite tasks. It always drains my energy, and I am always exhausted for a few days afterwards. Getting the groceries delivered means that I can spend my energy doing things that I find enjoyable instead.
Some of these things may seem a little weird or unnatural, but for those with autonomic neuropathy and other forms of dysautonomia, they are essential. They are all small things, but when combined, they make a huge difference in symptom control and quality of life.
Blythe Neer is a Chargie living well with Celiac Disease, Ehlers Danlos Syndrome, and Small Fiber and Autonomic Neuropathies. She spends most of her time at home blogging, taking photos, training her future service dog, and making unique spoon gifts with polymer clay for her Etsy shop. You can find her at sustainablespoonie.com or on Instagram at instagram.com/sustainablespoonie.