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21 Side Effects of Dysautonomia We Don't Talk About – in Photos

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Dysautonomia is typically described as an “autonomic nervous system disorder,” and may often be known for symptoms such as dizziness and fainting upon standing. But dysautonomia is an umbrella term for disorders of the autonomic nervous system, each of which has their own unique set of symptoms and diagnostic criteria, so people with dysautonomia may experience a wide range of symptoms and side effects. Side effects can range from physical issues that result from symptoms of the illness, to comorbid conditions, to the effects living with dysautonomia can have on your lifestyle or mental health.

It’s important to recognize and talk about the lesser-known side effects of dysautonomia so those with the condition can be better supported by loved ones, and better understood and treated by doctors. So, we asked our Mighty community to share a photo of a side effect of dysautonomia they experience that’s not often talked about. Perhaps you’ll recognize some of your own experiences in the photos below.

Here’s what our community shared with us:

1. “Severe fatigue – some days I can’t move from bed at all. I constantly have really dark under-eyes because my body is so tired of fighting. It can be scary because sometimes I can’t tell if I’m too fatigued to move or there’s something serious going on.” – Sadie M.

woman lying in bed

2. “Keloid scarring.” – Alison E.

keloid scarring

3. “The process of debating whether or not it’s worth it to get up and go to the bathroom or hold it longer. This is what happens just from going to the bathroom down the hall.” – Tessa H.

blood pressure monitor that reads 143 over 100

4. “The distention. I have so many digestive issues, that I will need to wear maternity clothes for weeks at a time.” – Bai J.

woman's stomach distended

5. “Wearing a mask with carbon filters in public because viral infections make my symptoms worsen and the virus stays for two weeks to one month.” – Abby T.

woman wearing a face mask filter

6. “My service dog is trained to get me a drink (usually Gatorade or Powerade). Having dysautonomia means you have to increase your water and salt intake! When you’re drinking this much water, it’s important to replenish your electrolytes.” – Charlotte H.

service dog holding a bottle of gatorade in its mouth

7. “Lovely [enoxaparin sodium] shots to thin my blood for blood clots. I don’t get a choice!” – KellyAnn P.

bruised area on woman's skin

8. “This is during the two-week trial for my bladder implant; the wiring for my Interstim implant is attached to the nerves in my spine and an external battery pack. After the two weeks and confirming the implant works, the device was permanently implanted. This device was needed because the nerves that control my bladder to stimulate urination had stopped working and I had been self-catheterizing for months. Thankfully this implant allows me to skip the catheters 90 percent of the time! Losing control of the nerves in your bladder, stomach and pelvic floor causes multiple issues, which is exactly what’s happened to me. I’ve lost control of all three. The bladder control loss is called neurogenic bladder, the paralyzation/loss of stomach nerves is called gastroparesis and the loss of control in the pelvic floor is called a dysgenic pelvic floor. People don’t talk about or discuss how dysautonomia can affect your entire central nervous system, not just your heart rate and blood pressure.” – Kathy G.

woman with pads and gauze and tubes after bladder surgery

9. “I have to use a wheelchair most of the time to get around because if I don’t I faint and often injure myself.” – Lidia K.M.

woman sitting in her wheelchair outside

10. “Sweating so much (in an air-conditioned building) that I have to put panty liners in my bra and the underarms of my shirt just so I don’t look like a drowned rat.” – ShayLee W.

sweat pads in woman's bra and clothes

11. “Chopping off all my hair because of the lack of showering due to daily infusions. I only have one day a week when my port isn’t accessed. Washing long hair in the sink, while trying not to get my bandages wet is way too hard. Hats help when rain ruins my dry shampoo.” – Samantha S.

woman taking a selfie wearing tank top and baseball cap

12. “Syncope… sometimes you hurt yourself on the way down (yep, that toe is broken).” – Melanie C.

woman's broken big toe

13. “After being stuck in bed all day dizzy and crying, my 17-month-old son wiping my tears away, reminding me that I’m still a great mom to him, no matter how I feel. We all need that support, no matter how small!” – Amanda S.

toddler wiping away his mom's tears

14. “This is a photo I took a few days ago to show that I really do get blood pooling in my arms. The left arm was what I took after standing for two minutes and the right one was taken while standing – but my right arm was against my chest. Just goes to show that while POTS/dysautonomia is an ‘invisible’ illness – that sometimes the symptoms really are visible.” – Hannah W.

blood pooling in a woman's arm

15. “I will go through phases where I can’t eat anything without being sick so I lose a lot of weight and really quickly. People always compliment me on my weight loss and tell me how good I look, not realizing I’m desperately trying not to starve to death.” – Gwendolyn A.

woman taking a selfie outside

16. “I rely on my adjustable bed. Here my legs are up high to get blood back to my brain. I require frequent rests throughout the day to prevent pain, collapsing, sight issues, and is necessary to being able to digest properly etc. At night to sleep my head is up to help blood plasma levels stay higher during the night.” – Sarah S.

woman elevating her legs in an adjustable bed

17. “It is never as simple as needing IV saline or LR, central line infections and reactions [can] cause a lot of hospital stays. Once you start infusions it is very hard to get off of them.” – Susan D.

woman with IV in her arm

18. “I can’t regulate my body temperature. It’s the middle of summer and I am wearing jeans and a jacket to stay warm. But on the flip side, if I am in the heat too long, it will make me dizzy. There’s no happy medium.” – Melany M.

woman wearing jeans and a jacket in 88 degree weather

19. “Swollen sore digits from poor circulation regardless of the weather.” – Sarah S.

woman's swollen fingers

20. “When everyone else is posting selfies, these are the ones I post. I have waves of nausea and vomiting episodes that can last days to months. All I can do is lay in the bed and cry.” – Melissa B.F.

woman lying in bed crying

21. “Balance issues. I can’t walk in a straight line, balance on one foot, or stay balanced with my eyes closed. I wanted a pic of me sitting on the tree but basically had to crawl back and forth so I didn’t fall.” – Sarah B.

woman sitting on a fallen tree

Originally published: June 29, 2018
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