June 25

POTS Stole My Energy and Everything That Made Me, Me

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This article is from the "Healthy Women" website.

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As told to Jacquelyne Froeber

About 15 years ago, I got really sick. It started with strep throat. Then mono. I was trying my best to power through as a busy mom with two young kids, but then the fever started. For days, I was out of commission, lying in sweat and unable to cool down. When my fever broke, I was so relieved. The worst was behind me and I couldn’t wait to feel better.

But it was like gravity had seeped into my limbs and cast a spell on my muscles. Everything felt heavy and I was so weak and tired. Like I’d run a marathon while having the flu. When I couldn’t muster the strength to put my kids’ clothes in the washing machine, my husband drove me back to the healthcare provider’s office. “I’m not getting better,” I said, letting the tears slide down my face. It took too much energy to wipe them away. But I was angry too. I was only 31 years old. I can lift a laundry basket. Something was wrong.

The provider diagnosed me with
Epstein-Barr virus and said there wasn’t much I could do but hopefully get through it. Best case scenario: I would feel better in a few weeks.

But that’s not what happened. I spent all my time in bed, exhausted from nothing, barely able to get up to go to the bathroom. It was like someone snatched my vitality — my identity — and I was too tired to find it.

I’ve always been a go, go, go type of person, so this new reality was torture. I could hear my kids laughing and running and playing. I could hear my husband setting the table with the plates we’d just bought, and the clink of the glasses as he loaded the dishwasher. Every sound reminded me of the life I was missing. It sparked moments of energy. I’d raise my head and attempt to get up, but my body wouldn’t do it. I began to turn on myself. Maybe I didn’t want it enough. Maybe I wasn’t trying hard enough. Then I’d collapse back in the bed completely drained by my thoughts.

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Weeks turned into years and nothing got better. Some days, my muscles were so exhausted, it was hard to breathe. I was depressed. All the strength I had went into provider appointments hoping to find something — anything — that could help me. But everyone said the same thing: You’re anxious, you’re depressed and you need to lose weight. I was on medication for anxiety and depression. I had lost weight, but my symptoms were the same. Also, it was next to impossible to exercise feeling like this. The cycle continued.

On the days I managed to get out into the world, I couldn’t spend more than a few minutes outside. I’d developed a heat intolerance, which was a huge problem in Alabama. I was fine one minute and then short of breath, dizzy and confused the next. It felt like I was suffocating and my core was a torch. My face turned purple. Even when I got into air conditioning, it took me a long time to bring my body temperature down. The heat intolerance added another layer of torture. My depression got worse. I felt trapped in the house.

The hardest thing was not being there for my kids. They were so young — my daughter was 3 and my son was 7 when I first got sick. Once, I took my daughter with me to a psychiatrist appointment and she looked at the doctor and said, “Please help my mom not be so tired.” That broke my heart into a million pieces. It wasn’t just me who felt powerless. We were all feeling it.

Alyson and her daughter in Alabama, 2011.

One day, my dad called and he was really excited. He told me to get tested for lupus. “Maybe that’s what’s wrong with you!” At one point, a dermatologist friend had thought my dad might have lupus because of a butterfly-shaped rash on his face, and we get similar rashes so maybe I had something like that.

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I went to a rheumatologist a few days later, and I didn’t have lupus, but my inflammatory markers were off the charts.

The provider thought I might have something called post viral postural orthostatic tachycardia syndrome, or POTS. I wanted to scream. For so long I’d been searching for an answer and this whole time, it was just a simple test away. Still, I was happy to get any information that could lead to me getting my life back.
To get a POTS diagnosis, I had a tilt table test where I was literally strapped to a table and tilted upward. My blood pressure dropped and I passed out, which is the signature sign of POTS.

When I came to, I was ecstatic. For too long I lived with this doubt hanging over me. Maybe I wasn’t just lazy and out of shape and dramatic. The truth was that my nervous system was damaged by a viral infection — probably when I was diagnosed with mono — and the disorder was causing the fatigue and overheating.

I was so excited I could barely spit out the word “treatment.” I was ready to start right away. I noticed that the provider didn’t look as happy as I was. He told me treatment options vary from person to person and they have a lot to do with lifestyle. And there’s no cure for POTS. Basically, there wasn’t a pill or a procedure that could return me to the bubbly, energetic Alyson I was before.

I began mourning the old me right there in the office. I’d been holding on to hope that once I was diagnosed I could feel like myself again. In a strange way it was freeing to know that I could never return to my old life. I had no choice but to move forward and make changes that were best for me living with POTS.

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First, that meant relocating. We loved our life and supportive friends in Alabama, but I couldn’t feel like a prisoner in my own home. We packed up and moved to Michigan where the weather is cooler. I felt a difference almost immediately. I can walk our dog and watch my kids play sports outdoors. I went shopping at Target for the first time in a long time and didn’t take a nap after. I felt like I won the lottery.

Alyson and her husband in snowy Michigan, 2023.Alyson and her husband in snowy Michigan, 2023.

The freedom to move without worrying about the heat has been a game changer for my mental and physical health. I’m so much more active and I also take a low-dose beta blocker and a medication for Type 2 diabetes, which I think has helped with my POTS symptoms too. I still have flares though, and I have to remind myself that I have a chronic condition and not to push myself too far.

Through it all my husband has been my rock. When I started to doubt if something was really wrong with me, he shut those thoughts down, and he encouraged me to keep going to find the truth. I’ve learned that it takes most women years to get a POTS diagnosis. My advice is to believe in yourself and remember that none of this is your fault. And ask for the tilt table test. Sometimes turning your world upside down is the best thing you can do.

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Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.

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This article https://www.healthywomen.org/real-women-real-stories/postural-orthostatic-tachycardia-syndrome-pots was reprinted from the "Healthy Women" website.


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