5 Things Your Friend With Dysautonomia Wants You To Know
October is Dysautonomia Awareness month! Maybe you’ve heard of it, most likely you haven’t…but today I am sharing the top 5 things your cold and constantly dizzy friend wants you to know.
Let’s look at what Dysautonomia is. Dysautonomia is somewhat an umbrella term to describe dysregulation of the autonomic nervous system. The autonomic nervous system unconsciously regulates many bodily functions such as heart rate, breathing, digestion, and many other responses your body has that you just don’t have to think about. For this very reason, Dysautonomia reminds me of what I have told people when they mention meeting someone with Autism; “When you meet someone with Autism, you’ve met ONE person with Autism. No two people with Autism are the same.”
I have found this to be true with Dysautonomia as well. I have met so many other people, primarily women, who have postural orthostatic hypotension or POTS (with or without mitral valve prolapse), neurocardiogenic syncope or other “forms” of dysautonomia who have such a myriad of symptoms that while we may share some symptoms, our journeys look very different.
This post is about my personal journey and the symptoms that I struggle with most; including why you might see me in fleece in the Summer and how my lips are not purple because I’m into that shade of lipstick.
1. Yes, this diagnosis came out of nowhere for us too. And news flash…we are struggling to understand it just as much as you are.
For me, when I look back on the years prior to my diagnosis, I can see little signs and symptoms that probably were an indication that something was brewing. I fainted very easily; was always intolerant to the cold; and had GI issues for as far back as I can remember, just to name a few. It wasn’t until after I had my two youngest children (18 months apart) that I really began to see things changing. In addition to the abovementioned problems, I had a headache almost every day. My body hurt all the time. I never slept well, but I suddenly was suffering from insomnia and running on about 3-4 hours of sleep, which for me (and probably most people) isn’t enough. At the time I was working as a nurse, and finally after months of feeling like I had the flu by the time I left work each day, I decided to see a doctor.
Fast forward and I now have a diagnosis of Dysautonomia.
Suddenly I have a “chronic illness.”
I mean I knew I felt terrible and it was a relief to know what was wrong but hearing and reading that you have chronic illness does something to the mind.
I read everything I could on the subject and finally things began to make sense. However, things don’t always make sense to my family. I’m not saying they aren’t supportive, but like a lot of “invisible diseases” it is hard to understand. Some days you feel like screaming, “I know 5 years ago I was able to chase my kid, work, run all the errands, come home and work out, clean, cook every meal, and never miss a beat…but I am NOT the same person I was then!” I don’t know why some days I feel great and then there are stretches of weeks I don’t feel well at all. If YOU think it’s hard to understand then think about how the person living it feels.
2. We are COLD! Yet we don’t handle the heat very well either. When I was diagnosed with Dysautonomia, I was also dual diagnosed with Raynaud’s disease. This can cause some areas of your body, primarily your hands, feet, and toes, to feel numb, cold, and even change colors in response to cold temperatures or stress. My hands, feet, and lips are often some shade or red or purple. You will see me in a fleece jacket all year round, even in 100-degree Alabama weather. I can’t handle the transition from the heat outside to the cool air inside, so I start immediately freezing when I walk inside. Some of us may be in jackets, some might be carrying salt shakers or Gatorade, but all of us are trying to keep our blood pressure up and our blood circulating.
Funny story…when I was working at the hospital it was always cold, so my lips always were some shade of purple. They were like that so much that people thought I wore purple lipstick!
3. We are TIRED! And we are all tired for so many different reasons. Insomnia is so common with Dysautonomia. Combine insomnia with our constant drops in blood pressure and poor perfusion and that equals one exhausting situation! Little things like going to the grocery store, running errands, cleaning the house, etc. can leave us completely wiped out some days. One of the hardest parts for me to get adjusted to is that I never know how I am going to feel after doing these things. Some days I feel totally fine, but then others it’s all I can do to make it to bedtime.
4. My nerves can’t take it! Literally! Dysautonomia is a disorder of the autonomic nervous system which has a direct role in the physical response to stress. Stress can look like a lot of different things for people. Whether it is attending an IEP meeting, meeting a deadline, financial or emotional stress, etc., my ability to handle those pressures and stressors are different than they were even five to ten years ago. I get severe headaches, brain fog, tachycardia, my “purple hue” seems to get worse, and I become physically exhausted. I think the worst part is I never really know how I will respond. Maybe I will be okay… Maybe I will be so tired I can’t hold my head up.
5. We are mourning the person that we used to be. It doesn’t matter how long ago you might have been diagnosed, if you are anything like me you remember how you felt before. I remember when I used to could do all.the.things. and not feel like I need a nap. STAT! Sure, I am getting older, and yes, I am a Mom, but this type of exhaustion and fatigue isn’t anything I can describe. I remember being able to work out on the stair climber or do kickboxing without having to get a doctor’s permission. I remember being able to go to work then after running a few errands before going home to cook dinner without even missing a beat. I miss my energetic, outgoing, happy self. I remember her, but I don’t think she knows me at all anymore.
I understand that not everyone’s journey is the same. I also get that there will be many people who read this that may not understand what it’s like to live with Dysautonomia or any other chronic illness for that matter. This informal piece was written for the sole purpose of shedding light on this diagnosis during National Dysautonomia Month and sharing a small glimpse into my life with it.
If you or a loved one suffer from POTS or any other condition under the Dysautonomia umbrella, I would love to hear from you!
**Editor’s note: Any medical information included is based on my personal experience. All questions or concerns regarding health and for information on a diagnosis, please consult a doctor or medical professional.
You are working hard to do what you can to maintain your life and a good part of it is attitude. You are honest, yet not defeated, encouraging, but not trite. Thank you for your honesty.
I am a Registered Nurse, married to one, and the mother of another nurse, so we all work together to adapt to the new adventures each day brings. I was an early patient of Thomas Chelimsky’s, as well as his wife, Gisela. They walked me through the early years, teaching me and giving us great treatment, support and perpectives.
It’s been 27 years since my diagnosis and I’ve managed to pack in all sorts of dramatic episodes, and yet, I am still alive and ever grateful each day. The complications keep arising, and I learn to adapt to each one.
I haven’t heard much about the “popsicle” lifestyle in anyone else, but do read occasional data about thermal dysregulation. The gray fingers and blue lips won’t get us on any fashion covers, and it’s a challenge to keep a healthy temperature. Mine will go down to 91-92 in a 72 degree room, and I don’t shiver or realize that I am halfway to hibernation. Sleeping with a room temp of 70-72, I heat up with a romantic outfit of PJs, socks, a fleece jacket AND a battery-powered heated sweatshirt! I can snuggle under our 4 blankets and keep the icicles from forming, gladly omitting snow boots. My dear husband, next to me, bilissfully sleeps without the covers or blizzard wear!
My dad, now 90, developed symptoms in his 80s so we are all immersed in the challenges, but are still laughing and treasuring life. It’s a journey of constant awareness of body functions , or lack of them, but it supplies opportunities to come alongside to others who suffer and need encojragement. With the constellation of our symptoms, we can understand so many others when they are blindsided by life, or a day when things fall apart.
To all of you who are struggling, I get it, I care, and, actually do understand your dilemmas.
I got a cardiac ablation for an arrhythmia when i was 21 and thought that was it but i continued to feel bad, come to find out i have Dysautonomia, I’m now turning 32 this year God willing and have been through a lot in these past two years, and the flare ups are horrible but i try to keep pushing forward and never really talk about my symptoms, but seeing someone explain it so well does mean a lot, thank you for sharing this.
I feel this 1000%!! I have not been diagnosed but believe this is what I am dealing with. I’ve had 2 doctors tell me my symptoms sound exactly like dysautonomia. I am waiting to see a neurologist and the wait is getting unbearable. The intense fatigue, body aches, tachycardia, dizziness, shortness of breath are too much to handle. And I’m tired of not having answers, or being told that it’s just “chronic fatigue syndrome”. All the doctors say “your tests are fine, your labs are fine…”. But I am NOT fine. Thank you for this post. It is encouraging to me to hear that others have the same issues.
I definitely felt this post 100%! I was just diagnosed about week ago but have had a majority of the symptoms for 5 plus years now and nobody knew what was going on. I currently work in healthcare and most of the providers I have worked with kept making me feel as if I was crazy until I worked with. Cardiologist. I said what could it hurt to see one to figure out why my heart rates for from 40-196 beats per minute with no effort. Still trying to process life but it doesn’t make sense lol
Thank you for this. I just got diagnosed this week and already feel many of the emotions you write about. It feels good to know there are others out there going through the same and I’m not crazy ! God bless