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Living with an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) is full of challenges on its own, but EDS/HSD often presents alongside other diagnoses such as dysautonomia. For Dysautonomia Awareness Month 2018, we asked our Ehlers-Danlos Society social media community, “What does your dysautonomia feel like?”
We received over 100 responses from individuals living with dysautonomia as well as an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD). Our community shared stories of unrelenting fatigue and debilitating brain fog. We heard about weakness, racing hearts, and frustration. An overwhelmingly common experience was the feeling of a body out of control; feeling too hot or too cold constantly—or even both at the same time.
Here’s what our community had to say:
- Monika – At best I’m very tired all the time and it gets hard to move my body as if feels like it’s made of lead. At worst, I will not be able to leave my bed or even sit for a day or two. [POTS is] not only about tachycardia and fainting.
- Lindsey – I feel hot and sweaty one minute and freezing to the core the next. If I’m cold, I can put lots of clothes on and pile blankets high and my skin feels like it’s on fire to someone else but I still think I’m freezing. I often have to take scorching showers to warm myself to the bone. I don’t sweat often or much and so I have extreme difficulty cooling myself. If I get too hot, my skin flushes red and I get nauseated and may or may not vomit. I may have to take nausea medicine which often puts me to sleep. I’m thirsty constantly, bring water everywhere with me, get dehydrated extremely easily when I don’t have enough water.
- Robin – I feel like I’m constantly in the “just woke up” phase; my memory retention is almost nonexistent. I feel like most of my personality and almost all of my creativity is squashed. It’s almost like I just need my brain to wake up all the way but it functions just enough to get me through the day
- Cheryl – Dysautonomia makes me feel as if I’m an alien living on some strange planet where the environment, food, gravity, weather, etc. are all different from what I need in order to function normally.
Adira – It feels like the day after the flu…not quite mid-flu but not all better yet either. Every day without an ER trip is a victory.
- Tallulah – When I would get sudden onset fatigue, it felt like all my batteries were suddenly drained and if I didn’t lie down immediately, I would faint or die. I would lie down and not move an inch because I felt so weak. I couldn’t catch my breath, my muscles ached, and I felt any minute my heart would stop from the tachycardia.
- Lauren – It feels like living in a body that is constantly malfunctioning. My body temperature is constantly jumping around; right now I have one hand that is warm and the other is like ice. I don’t sweat properly, so heat is brutal — even just taking a bath. Half the systems in my body don’t work the way they’re supposed to, and treatment is a nightmare because the doctors are basically trying to hit a moving target. And all I can do is try to keep going as my body goes haywire.
- Kelly – Before being diagnosed with POTS, it felt like my body was on overdrive. Walking a short distance would leave me out of breath, exhausted, clammy, and feeling like my heart was going to pound out of my chest. Sometimes it would happen without any kind of exercise to induce it, and I was afraid I was having a heart attack or some other kind of emergency. It would also leave me feeling like every ounce of energy had been drained out of my body, and I’d be in tears over how tired I felt.
- Kate – Feeling like I’m overheating, but someone touching my skin saying, “you feel like ice!” Not knowing whether to pile on my blankets or turn on more fans. Having cold feet, hands, and nose, but boiling everything else. Clammy skin. Cold sweats. Hot sweats. Night sweats so bad that my shirt is soaked in the morning. Having to constantly explain why I don’t need a coat even though it’s cold. Doctors not being able to find my pulse or blood pressure, but then wondering why my heart rate is so high. My ear suddenly getting red and hot for no reason. Half of my face or arm flushing red and warm. Never having a good explanation for any of it.
- Mary – Dripping with perspiration one minute, pulling a sweater on the next. Exhausted with any exertion, shaking, palpitations, and feeling ridiculous when I am out because I have to carry a fan and a face washer. Standing up quickly and holding on to the wall until the lights stop flashing and the room stops spinning. Being startled by the slightest things and feeling like your heart is in overdrive every time the phone rings when you are resting. It is the most uncomfortable life, living with orthostatic intolerance.
- Gail – I feel like my life is being conducted with cement shoes on my feet.
- Clair – Before I was diagnosed with POTS I used to tell my doctors that when I stand it feels like I’m sinking into the floor. No one understood at all. Now, I realize I’m feeling the effect of blood pooling. I’m not sinking into the floor, my blood is sinking into my feet and hands.
- Ashley – It feels like a switch is being shut off inside me for absolutely no reason. Like my battery has gone from 55% to 1% without warning. Day over.
- Dani – I get presyncope every time I lean downward at all and dizziness when I am back upright; sometimes my vision takes longer to come back. It’s like being drunk, even though I stopped drinking alcohol many months ago, but it’s due to a lack of coordination and brain fog.
Iris – Dysautonomia feels like nothing is easy. Nothing makes sense. You can no longer rely on your body’s autopilot. You are hot one second, freezing the next. You stand up and wake up on the floor 5 minutes later. You cannot eat. You cannot pee. Nothing comes easy.
- Kalan – It feels like losing control of the most basic functions in your body. It teaches you how to be an entirely new different definition of strong even when your body is not. It’s like having your body lie to you about how hot/cold an environment really is. It’s never knowing how long it will take for a flare to pass. It’s standing up and feeling like you’ve won a battle just to remain standing with clear vision for at least a few minutes. It’s becoming your very own superhero because though others may not see it, your mind and heart is fighting a battle for your body on a daily basis. The symptoms are endless, the fight is ongoing, but the reward of knowing how strong you are is incredible.
- Karrie – It’s like one minute your normal and the next you just got off the the most nauseating roller coaster of your life. Your sweaty, heart is pounding, head is spinning, you can’t find your balance, and your vision blurs.
- Ash – My “normal” feels like doing wind sprints at high elevation. I feel like I have plenty of air in my body but no oxygen. I feel like I have no control of my body anymore. Standing up feels like face planting a wall
- Liz – Dysautonomia feels like when you try to plug in a USB cable and it never goes in right the first time.
- Billie – It feels like getting off a really fast fairground ride…but you only stood up! Your heart thumps, you get a layer of cold sweat, your ears ring, you feel sick, the room spins and you forget what you stood up for! (Or, you realise you’re on the floor…)
Disclaimer: Each quote submitted to The Ehlers-Danlos Society for this article is published “as-is,” with only minimal edits for spelling, grammar, length, and typographical mistakes. Each reflects the personal views, experiences and opinions of the individual authors—and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims, symptom attribution, or comments in the story.
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