One reason I do this blog is so others with POTS, NCS, or other forms of dysautonomia won’t feel as alone. I have only met (in person) two people who have POTS, and both of them have different experiences than I do, along with some overlaps. To me, it’s helpful to know others are going through something similar and that I’m not (just) crazy. Today, I am introducing another typical POTS and/or NCS symptom; for more, see here.
I recently asked members of a POTS Facebook group to describe fatigue. People posted a lot of great answers (at bottom). My favorite came from Lea K.: “Fatigue feels like I am in a big vat of caramel. Everything is so heavy.” This resonated with me, and I think, many others.
Fatigue is a major problem for most people with POTS and/or NCS, as well as many other chronic illnesses. My husband helped me think of a helpful way to explain it. He had a cell phone that, when far from home, would constantly keep trying to find service and would run the battery out quickly. For me, my body is always trying (and often failing) to find equilibrium and getting exhausted in the process.
I describe fatigue as feeling like I can only move my eyeballs—the rest of my body is too heavy to move, even though I may not necessarily feel sleepy. I do have fewer horribly rough days than I used to, probably thanks to my treatment, but fatigue definitely limits my activity level every single day. I often am quiet when very tired, and my face sometimes droops a little, almost as though even my facial muscles are worn out. I usually don’t want you to know just how fatigued I am, because I want to be my old upbeat, energetic self, so I may use a good bit of energy trying to convince myself (and you) I’m not that tired, to varying degrees of success.
Thanks to others who contributed descriptions; some may resonate with you or help you understand POTS fatigue better.
Susie: For me, fatigue feels like 100 pound weights pulling me into the ground.
Toni: I feel like a potted plant.
Venus: I’m living in a stage of constant fog.
Emily: For me, fatigue feels like being run over by a truck .
Chelsea: Emily, that’s what I was going to say too! Except I was going to say like being run over by a MACK truck.
Jennifer: For me, fatigue feels like not being high energy me.
Christina: For me, fatigue feels like dental anesthesia, except you’re not allowed to sleep it off.
Touching Lives: For me, fatigue feels like my body has been unplugged from its energy source but still expected to somehow function. I always feel like the toy whose batteries are drained but you keep pushing the button to hear it make the dragging sound that it makes. I hope that makes sense- if not please just chalk it up to my fatigue!
Ellen: I lay there in pain, and I cannot move.
Jac: For me, fatigue feels like the protective heavy vest they put on you for dental procedures. One word? Heavy.
Donna: Like your brain does not have enough energy to even make your limbs move.
Colleen: It’s completely consuming. Resistance is futile.
The next few days, I’ll post a bit more about fatigue since so many can relate– sounds exciting, right?!? I know…. You are yawning already.